Network News - Winter/Spring 2010 - Canadian Breast Cancer ...
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<strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong><br />
<strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong><br />
Vol. 14, N o 1<br />
<strong>Network</strong> <strong>News</strong><br />
eSSeNtIAL NeWS FoR CANAdIANS AFFeCted BY BReASt CANCeR<br />
<strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong><br />
BRCA Genes Special Issue<br />
Lynda McHenry enjoying time with her three daughters<br />
(from left clockwise) Leah, Sara, Lana, Lynda
<strong>Network</strong> <strong>News</strong><br />
Volume 14, Number 1, <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong><br />
ISSN: 1481-0999 Circulation: 6,500<br />
PUBLICATIONS MAIL AGREEMENT NO. 40028655<br />
RETURN UNDELIVERABLE CANADIAN ADDRESSES TO<br />
CANADIAN BREAST CANCER NETWORK<br />
331 COOPER ST, SUITE 300, OTTAWA ON K2P 0G5<br />
E-mail: cbcn@cbcn.ca<br />
<strong>Network</strong> <strong>News</strong> is published by the <strong>Canadian</strong><br />
<strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> (CBCN) to provide<br />
the breast cancer community with up-to-date<br />
and understandable information on issues at<br />
the national level, to promote education and<br />
awareness, and to highlight the concerns of<br />
<strong>Canadian</strong>s affected by breast cancer.<br />
We would like to thank the individuals who<br />
wrote articles and the breast and ovarian cancer<br />
support groups that provided information. We<br />
welcome your ideas, contributions and letters,<br />
subject to editing and available space. The<br />
articles in this issue do not necessarily represent<br />
the views of CBCN but are the opinions of the<br />
authors. CBCN gives permission to copy with<br />
attribution.<br />
<strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong>,<br />
331 Cooper Street, Suite 300,<br />
Ottawa, ON K2P 0G5. Tel.: (613) 230-3044.<br />
1-800-685-8820. Fax: (613) 230-4424.<br />
E-mail: cbcn@cbcn.ca. Website: www.cbcn.ca.<br />
Editor: Jackie Manthorne<br />
Editorial Committee: Mona Forrest,<br />
Jackie Manthorne<br />
Guest Editor: Colleen Lyle<br />
Contributors: Cathy Ammendolea; Jackie<br />
Manthorne; Kelly Metcalfe, RN, PhD; Lorna<br />
Marshall; Dawna M. Gilchrist, MD, FRCPC,<br />
FCCMG, DHMSA; Hereditary <strong>Breast</strong> and Ovarian<br />
<strong>Cancer</strong> Foundation; Jodi Wilkie, B.Sc. Pharm.;<br />
Jane Jancovic; Hereditary <strong>Breast</strong> & Ovarian<br />
<strong>Cancer</strong> Society of Alberta; Susan Armel, MS,<br />
CGC Genetic Counsellor; Rochelle Demsky, MS,<br />
CGC Genetic Counsellor; Fran Turner; Mary Jane<br />
Esplen, PhD, RN; Lynda McHenry; Melissa A.<br />
Vloet, PhD Candidate; Mario Capelli, PhD, C.<br />
Psych.; Steph H.; Jillian Alston, MD Candidate;<br />
Willow <strong>Breast</strong> <strong>Cancer</strong> Support Canada; Colleen<br />
Young<br />
Translation: Martin Dufresne; Francine Lanoix;<br />
Jeanne Duhaime; Reine Daas; Véronique Lacroix<br />
Cover Photo: Lynda McHenry, contributor,<br />
enjoying time with her three daughters. Clockwise<br />
Lynda, Leah, Sara, Lana<br />
Staff: Jackie Manthorne, Executive Director,<br />
jmanthorne@cbcn.ca; Mona Forrest, Director<br />
of Development, mforrest@cbcn.ca; Jenn<br />
McNeil, Project Coordinator, jmcneil@cbcn.<br />
ca; Tiffany Glover, Public Relations and<br />
Government Relations Manager, tglover@cbcn.<br />
ca; Colleen Lyle, Communications Manager,<br />
clyle@cbcn.ca (on leave); Heather Sullivan,<br />
Communications and Information Coordinator,<br />
hsullivan@cbcn.ca; Sparrow McGowan, Web<br />
Coordinator, smcgowan@cbcn.ca; Maureen Kelly,<br />
Receptionist, maureen@cbcnc.ca; Judy Proulx,<br />
Receptionist, jproulx@cbcn.ca; Sandie Lessard,<br />
Bookkeeper, sandie@cbcn.ca<br />
President’s Report<br />
By Cathy Ammendolea<br />
I<br />
am very proud to serve as the president of <strong>Canadian</strong><br />
<strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> (CBCN). I am also proud<br />
to dedicate my first President’s Report to the<br />
memory of “Vi,” a woman who introduced me to the<br />
issue of breast cancer. In 1980, I began working as an<br />
administrator for a small medical office. I was 23 years Cathy Ammendolea,<br />
President of <strong>Canadian</strong> <strong>Breast</strong><br />
old and a young mother of a three-year-old daughter. <strong>Cancer</strong> <strong>Network</strong><br />
During my first day on the job I was welcomed by all<br />
the members of the office. Vi introduced herself, greeted<br />
me with a cheery smile and said, “Hi, my name is Vi, short for Violet. I am the nurse<br />
practitioner. It is a pleasure to meet you.” Then she added, “Oh, by the way, I’m<br />
wearing a wig because I am currently on chemo treatment for breast cancer.”<br />
My heart skipped a beat. Vi had just spoken a language that was unfamiliar to<br />
me. Nobody in my family had ever talked about cancer so openly. <strong>Cancer</strong> was<br />
discussed in a soft whisper and in very brief conversation. I was saddened to<br />
meet such a warm, gentle and bright lady who was in fact dying of breast cancer.<br />
I couldn’t grasp the idea of how her children would go on without her.<br />
Vi’s experience with breast cancer was the beginning of a journey which led me<br />
to where I am today. In 2000, I myself was faced with a breast cancer diagnosis.<br />
However, somehow I felt that I had been through this before. Suddenly it came to<br />
me: The gentle reminder of a woman who was ahead of her time in discussing her<br />
disease with such ease. Not even realizing it at the moment, I adopted her style<br />
and courage. I utilized my personal experience with Vi to educate myself about<br />
cancer. Immediately after my treatments, I became a peer mentor to other women<br />
who were newly diagnosed with breast cancer. I became an advocate, attended<br />
continuing education conferences, and worked as a psychosocial volunteer. So<br />
many doors have opened since my diagnosis: Education, awareness, advocacy,<br />
support groups and much more. Now, CBCN has given me the opportunity to<br />
In this issue:<br />
Executive Director’s Report ................4<br />
Defining BRCA Genes ...................6<br />
My Story ............................8<br />
View CBCN Webinars Online .............10<br />
What is BRCA? .......................11<br />
In Edmonton, How to Obtain Referral to<br />
the Edmonton <strong>Cancer</strong> Genetics Clinic .......12<br />
The Hereditary <strong>Breast</strong> and Ovarian <strong>Cancer</strong><br />
Foundation Third International Symposium<br />
on BRCA in Montreal in October 2009 ......14<br />
Hormone Therapy After Risk Reducing<br />
Oophorectomy – Helpful or Harmful? .......15<br />
Knowledge is Power ...................17<br />
Hereditary <strong>Breast</strong> & Ovarian <strong>Cancer</strong> Society<br />
of Alberta 8th Annual Fall 2009 Conference ...18<br />
Informing Women of the Risks and Benefits<br />
of Genetic Testing for Hereditary <strong>Breast</strong> and<br />
Ovarian <strong>Cancer</strong> .......................19<br />
About Ovarian <strong>Cancer</strong> Canada ............21<br />
A Rose Grows: Fighting <strong>Cancer</strong>, Finding Me ...22<br />
Obituary – Marg Campbell ...............22<br />
BRCA1/2 Testing:<br />
Navigating Through the Various Reactions:<br />
All Parts of the Proces ..................23<br />
Scarred, Single and Sexy ................26<br />
The Psychobiological Risk and Resilience<br />
of Young Families Affected by Maternal<br />
<strong>Breast</strong> <strong>Cancer</strong> ........................28<br />
Top 10 Things Young Previvors (Probably)<br />
Don’t Want to Hear ....................30<br />
Familial <strong>Breast</strong> <strong>Cancer</strong> and No BRCA1/2<br />
Mutation? ...........................31<br />
Willow’s Program for Hereditary <strong>Breast</strong><br />
and Ovarian <strong>Cancer</strong> ...................32<br />
‘E’ is for Empowered - Are You an e-patient? . .33<br />
CBCN: Here for You ....................34<br />
CBCN’s Website Friends Remembered Pages . .34<br />
Members, Friends, Funding Partners and<br />
Corporate Friends .....................35<br />
<strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> Partners ....36<br />
2 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
e part of a remarkable Board of<br />
Directors, with passionate, hardworking<br />
Board members and<br />
staff.<br />
I know that my time with<br />
CBCN will be very exciting.<br />
This year, our work will include<br />
the possibility of organizing a<br />
second National Conference<br />
for Young Women Living with<br />
<strong>Breast</strong> <strong>Cancer</strong>, provided that we<br />
can raise sufficient funds. We<br />
will also continue to respond<br />
to critical issues such as the<br />
new recommendations from<br />
the United States Preventive<br />
Services Task Force (USPSTF),<br />
which advise against the use<br />
of mammography screening<br />
before age 50. The USPSTF<br />
also recommends against the<br />
practice of breast self-examination<br />
(BSE) as a screening tool for women of<br />
any age. CBCN disagrees with these<br />
recommendations from the USPSTF.<br />
We strongly support mammography<br />
screening in Canada, starting from<br />
age 40, and we urge women to<br />
continue practicing BSE as a way of<br />
familiarizing yourself with monthly<br />
changes in your breasts and to seek<br />
medical attention if you discover<br />
something that feels unusual. Women<br />
have been practicing BSE for years.<br />
I myself began performing BSE soon<br />
after my dear friend passed away in<br />
1982. These recommendations have<br />
caused quite a bit of controversy and<br />
will likely continue to be doubted<br />
and disputed by several medical and<br />
survivor-based communities.<br />
This edition of <strong>Network</strong> <strong>News</strong> revolves<br />
around the familial breast cancer<br />
susceptibility or BRCA genes. I learned<br />
Jackie Manthorne and incoming President Cathy Ammendolea present plaque of appreciation to past President Diana Ermel<br />
a great deal about BRCA genes over<br />
the past few years. I support the<br />
Hereditary <strong>Breast</strong> & Ovarian <strong>Cancer</strong><br />
Foundation (HBOC Foundation) in<br />
my home city of Montreal. HBOC<br />
Foundation states that, “In some<br />
populations, as many as 1 in 40 women<br />
has certain alterations in their basic<br />
genetic code, commonly referred to<br />
as BRCA mutations. In the absence of<br />
risk reducing strategies, these women<br />
have as high as a 90 percent life time<br />
risk of developing breast cancer, and a<br />
40 percent life time risk of developing<br />
ovarian cancer. BRCA mutations are<br />
inherited, so this change in the genetic<br />
code may be passed from parents to<br />
children, putting future generations at<br />
risk.”<br />
Years have gone by since Vi<br />
introduced herself to me. A disease<br />
that was often concealed in the past is<br />
now being discussed more openly. I<br />
often wonder how much the lady with<br />
the bright smile and warm manner<br />
would appreciate the hard work of<br />
such a large number of individuals<br />
and organizations, dedicated to the<br />
concerns of all <strong>Canadian</strong>s affected by<br />
breast cancer and for those at risk as<br />
well.<br />
This is to Vi for making a difference in<br />
my life. •<br />
Cathy Ammendolea is a 10-year breast<br />
cancer survivor who has been involved<br />
with several breast cancer organizations<br />
in addition to the <strong>Canadian</strong> <strong>Breast</strong><br />
<strong>Cancer</strong> <strong>Network</strong>. She has been a volunteer<br />
for nine years for a local hospital<br />
in Montreal, working as a patient<br />
navigator and psychosocial volunteer<br />
with the Gynecological Oncology team<br />
at the Segal <strong>Cancer</strong> Centre at the Jewish<br />
General Hospital. She is also a patient<br />
representative on the McGill University<br />
Integrated Health <strong>Network</strong> (RUIS).<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 3
Executive Director’s Report<br />
By Jackie Manthorne<br />
This special issue of <strong>Network</strong> <strong>News</strong><br />
is about the BRCA 1/2 genes.<br />
Some articles have been written<br />
by doctors or researchers, others by<br />
women living with a BRCA diagnosis.<br />
Share the information in this issue with<br />
your friends and colleagues so that<br />
we can raise awareness about familial<br />
breast cancer. Feedback is always<br />
appreciated, and if you would like to<br />
add to the discussion, we will consider<br />
printing letters, personal stories and<br />
additional articles in future issues of<br />
<strong>Network</strong> <strong>News</strong>. Send your comments to<br />
cbcn@cbcn.ca .<br />
CBCN Stakeholder’s Consultation<br />
The <strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong><br />
held its Stakeholder’s Consultation<br />
from October 16-17, 2009, in Ottawa,<br />
Ontario. Participants from across<br />
the country were invited, and<br />
nearly every province and territory<br />
was represented at the meeting.<br />
Attendees included CBCN Board<br />
members, the Public Health Agency<br />
of Canada (PHAC), representatives<br />
from provincial and territorial breast<br />
and women’s cancer networks,<br />
representatives from national and<br />
regional breast and women’s cancer<br />
organizations, and representatives<br />
from other organizations interested in<br />
women’s health, including the Tom<br />
Baker <strong>Cancer</strong> Centre; the Hereditary<br />
<strong>Breast</strong> and Ovarian <strong>Cancer</strong> Society of<br />
Alberta; Disabled Women’s <strong>Network</strong><br />
Canada; the <strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong><br />
Foundation; <strong>Cancer</strong>Care Manitoba;<br />
the Atlantic Centre of Excellence for<br />
Women’s Health; Ovarian <strong>Cancer</strong><br />
Canada; ReThink <strong>Breast</strong> <strong>Cancer</strong> and<br />
<strong>Breast</strong> <strong>Cancer</strong> Action Ottawa.<br />
During the consultation, the <strong>Canadian</strong><br />
<strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> priorities<br />
established during its 2002 Stakeholder<br />
Consultation were reviewed. These<br />
priorities were (in no particular order):<br />
Priority 1: A Clearinghouse<br />
(bilingual website)<br />
Priority 2: Funding<br />
a) Sustainability for CBCN<br />
b) To enhance the capacity<br />
of other breast cancer<br />
organizations<br />
c) Treatment-related<br />
expenses<br />
Priority 3: Young Women with <strong>Breast</strong><br />
<strong>Cancer</strong><br />
Priority 4: Rural Women and Men<br />
with <strong>Breast</strong> <strong>Cancer</strong><br />
Priority 5: Building Unity and<br />
CBCN Image<br />
Priority 6: Improving<br />
Communications and<br />
Information Sharing<br />
Priority 7: Women and Men with<br />
Metastatic <strong>Breast</strong> Disease<br />
Priority 8: Genetic Testing<br />
Priority 9: Prevention & Planning<br />
Priority 10: Policy Development<br />
and Advocacy<br />
Regional challenges and priorities<br />
were considered, CBCN’s vision was<br />
discussed, and work was done on<br />
defining areas for action by CBCN in<br />
the next five years, which will be finetuned<br />
by the CBCN staff and Board.<br />
There was strong affirmation of the<br />
important leadership role that CBCN<br />
plays in serving as the voice of breast<br />
cancer survivors, and the importance<br />
of making that role more visible. This<br />
requires an emphasis on branding,<br />
public relations and sustainability.<br />
There was also recognition that at<br />
the national level, CBCN can best<br />
provide a leadership role in advocating<br />
for equitable policies for all women<br />
with cancer by partnering with other<br />
cancer organizations and linking with<br />
provincial and territorial networks.<br />
Photo: Brian Jackson<br />
Jackie Manthorne,<br />
Executive Director of the<br />
<strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong><br />
After reviewing the 10 priorities,<br />
participants suggested that CBCN<br />
concentrate on the following priorities:<br />
Building Unity and the <strong>Network</strong><br />
Image<br />
• Branding and Communication<br />
– as the voice of survivors<br />
• Organizational Planning and<br />
Sustainability<br />
Policy Development and Advocacy<br />
• Advocacy and Capacity<br />
Building (for advocacy)<br />
• Provincial Territorial<br />
Partnerships<br />
• Partnering with Related<br />
Organizations<br />
Research and diversity are themes<br />
that can be linked throughout other<br />
priorities above and below, such as:<br />
Communication and Information<br />
Sharing<br />
Quality of Life and Survivorship<br />
Issues<br />
Rural and Young Women<br />
By the end of the weekend, the<br />
following consensus statement was<br />
developed:<br />
In five years, the <strong>Canadian</strong> <strong>Breast</strong><br />
<strong>Cancer</strong> <strong>Network</strong> will be a financially<br />
stable organization that is viable,<br />
active and known as the voice of<br />
breast cancer survivors, reaching out<br />
to and representative of people that<br />
are underserved, providing leadership<br />
built on research, collaborating with<br />
others, assuming a leadership role<br />
in survivorship issues, educating<br />
and raising awareness on hereditary<br />
4 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
CBCN Board Members, staff and participants at the Western Regional Meeting in Calgary, November 2009<br />
issues, and has clarified its position<br />
in relation to other cancers with an<br />
ongoing scan of existing initiatives.<br />
The Board of Directors of CBCN is<br />
currently reviewing its <strong>2010</strong> priorities<br />
in light of the direction provided<br />
at the Stakeholder Consultation.<br />
Revised priorities will be printed in an<br />
upcoming <strong>Network</strong> <strong>News</strong>.<br />
<strong>Breast</strong> & Women’s <strong>Cancer</strong>s:<br />
Increasing Capacity through<br />
Sharing Knowledge, Skills and<br />
Best Practices<br />
<strong>Breast</strong> and Women’s <strong>Cancer</strong>s is a oneyear<br />
project of the <strong>Canadian</strong> <strong>Breast</strong><br />
<strong>Cancer</strong> <strong>Network</strong> which encompasses<br />
two skill development Webinars on the<br />
determinants of health and capacity<br />
building and three regional meetings<br />
to discuss the impact of the move<br />
towards breast and women’s cancers.<br />
The objectives of this project are<br />
to create opportunities for breast<br />
and women’s cancers communities<br />
to increase their capacity to share<br />
knowledge of risk factors and<br />
conditions with their members<br />
and clients through networking,<br />
knowledge exchange, and education<br />
and skills development, to utilize<br />
CBCN’s commissioned research<br />
on partnerships and its companion<br />
template partnership agreement to<br />
increase capacity in the breast and<br />
women’s cancers communities and<br />
to create and manage partnerships<br />
and utilize the Model for National<br />
Collaboration to promote and improve<br />
collaboration between breast and<br />
women’s cancers organizations to<br />
increase capacity for networking and<br />
information and knowledge sharing.<br />
The project will end March 31, <strong>2010</strong>.<br />
Atlantic Regional Meeting<br />
The Atlantic Regional Meeting was<br />
held in Halifax in October 2009.<br />
Participants from across the region<br />
were invited, including representatives<br />
from breast and women’s cancer<br />
networks, related organizations, and<br />
survivors. 18 participants attended the<br />
meeting, plus CBCN staff members<br />
and facilitators.<br />
During the consultation, attendees<br />
were updated on previous<br />
collaboration in the region and<br />
reminded of the history of the breast<br />
cancer networks and the move<br />
towards women’s cancers. Attendees<br />
engaged in group work to discuss<br />
the opportunities and challenges of<br />
expanding the networks to include<br />
gynecological cancers, regionally and<br />
provincially, and provincial objectives<br />
and timelines were defined. Attendees<br />
also brainstormed opportunities for<br />
collaboration with other provinces<br />
and networks, other cancers, and new<br />
groups. An education session was also<br />
held to educate participants about<br />
preparing research projects for ethics<br />
review.<br />
Attendees were enthusiastic about<br />
the opportunities for collaboration<br />
throughout the region, and identified<br />
actions and timelines for three main<br />
objectives:<br />
Speaker’s Series<br />
Facilitator Training Manual for<br />
Community Contacts<br />
Resources for Newly Diagnosed<br />
Women (gynecological cancers)<br />
Continued on Page 9 <br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 5
Defining BRCA Genes<br />
By Kelly Metcalfe, RN, PhD<br />
In 1994 and 1995 respectively, the<br />
BRCA1 and BRCA2 genes were<br />
discovered. For women who carry<br />
a mutation in one of these genes, the<br />
risk of developing breast cancer is<br />
estimated to be up to 87% by the age of<br />
70 1 . Women with a BRCA1 or BRCA2<br />
mutation have one of the highest known<br />
risks for the development of breast<br />
cancer. However, with this genetic<br />
information, women are in a position to<br />
be able to reduce their breast cancer risk<br />
by using breast cancer risk prevention<br />
strategies. Therefore, the value of<br />
genetic testing for BRCA1 and BRCA2<br />
mutations is that high-risk women can<br />
be identified, and ultimately fewer<br />
women will be diagnosed with breast<br />
cancer and die of the disease. However,<br />
this is all dependent on whether or<br />
not a woman elects for a breast cancer<br />
prevention option.<br />
The current cancer reduction<br />
options available to women with<br />
a BRCA1 or BRCA2 mutation<br />
are chemoprevention (including<br />
Tamoxifen) 2 3 , or prophylactic surgery<br />
(mastectomy and oophorectomy) 4 5 .<br />
None of these options offer women<br />
a 100% breast cancer risk reduction,<br />
and each preventive option has<br />
risks and benefits, both medical and<br />
psychological. These circumstances<br />
cause the decision-making process to<br />
be difficult for women regarding breast<br />
cancer prevention.<br />
A prophylactic mastectomy involves<br />
the removal of both breasts in the<br />
absence of disease. The goal of<br />
prophylactic mastectomy is to prevent<br />
breast cancer, with its potential for<br />
metastatic spread and potential to<br />
cause death. Studies by Hartmann<br />
et al. suggested that prophylactic<br />
mastectomy offers a reduction in<br />
risk of breast cancer of 80% or more<br />
in women with a family history of<br />
breast cancer 6 , and greater than an<br />
89% risk reduction in women with a<br />
known BRCA1 or BRCA2 mutation 4 .<br />
Meijers-Heijboer et al. also found<br />
that there was a significant risk<br />
reduction of breast cancer associated<br />
with prophylactic mastectomy when<br />
compared to women undergoing breast<br />
screening 5 . Research suggests that<br />
satisfaction with the decision to have<br />
prophylactic mastectomy is high 7 8 , and<br />
that psychosocial functioning is not<br />
compromised 7 9 .<br />
In addition to an increased risk of<br />
breast cancer, women with a BRCA1<br />
or BRCA2 mutation also have an<br />
increased risk of developing ovarian<br />
cancer. The preventive removal<br />
of the ovaries and fallopian tubes<br />
(prophylactic oophorectomy) can<br />
provide significant reductions in risk<br />
of both breast and ovarian cancers<br />
in women with a BRCA1 or BRCA2<br />
mutation. Estimates of the effectiveness<br />
of prophylactic oophorectomy in<br />
preventing ovarian cancer have<br />
varied widely from 60% to 95% 10-12 .<br />
Prophylactic oophorectomy has also<br />
been shown to reduce the risk of breast<br />
cancer in women with a BRCA1 or<br />
BRCA2 mutation. The greatest risk<br />
reduction is observed if a woman has<br />
a prophylactic oophorectomy prior to<br />
the age of 40 (50% breast cancer risk<br />
reduction) 13 . After the age of 50, no<br />
benefit in breast cancer risk reduction<br />
is observed. Overall, prophylactic<br />
oophorectomy is effective at reducing<br />
the risk of both breast and ovarian<br />
cancers in women with a BRCA1 or<br />
BRCA2 mutation. However, there<br />
are important side-effects (eg. hot<br />
flashes, vaginal dryness, decreased<br />
libido) associated with this surgery,<br />
as a woman is placed into immediate<br />
menopause.<br />
Tamoxifen is a medication that is<br />
taken to reduce the risk of developing<br />
breast cancer. It is a selective estrogen<br />
receptor modulator (SERM) that<br />
competes with estrogen for binding<br />
to the estrogen receptor. In humans,<br />
Dr. Kelly Metcalfe<br />
Tamoxifen acts as an estrogen<br />
antagonist in breast tissue, inhibiting<br />
the growth of estrogen-dependent<br />
breast tumors 14 . Among high-risk<br />
women, a 49% risk reduction of<br />
invasive breast cancer risk has<br />
been associated with Tamoxifen 15 .<br />
Tamoxifen usage has been shown<br />
to reduce the risk of invasive breast<br />
cancer by 62% in healthy BRCA2<br />
carriers 2 . In addition, Tamoxifen<br />
has been shown to be effective at<br />
preventing contralateral breast cancer<br />
(breast cancer in the opposite breast)<br />
in both BRCA1 and BRCA2 mutation<br />
carriers with breast cancer 3 16 . In the<br />
National Surgical Adjuvant <strong>Breast</strong> and<br />
Bowel Project (NSABP) P-1 Study 15 ,<br />
which examined breast cancer risk<br />
reduction associated with Tamoxifen<br />
use in high-risk women, there were<br />
medical side-effects associated with<br />
Tamoxifen including endometrial<br />
cancer, vascular events, and cataracts.<br />
Making decisions about breast cancer<br />
prevention are difficult for women.<br />
Each option that is available to them<br />
has benefits and risks (both medical<br />
and psychological). No choice will<br />
satisfy every one of an individual’s<br />
personal objectives and no alternative<br />
is without its risk of undesirable<br />
outcomes. To try to help women with<br />
these difficult decisions, we have<br />
recently developed a decision aid for<br />
breast cancer prevention in women<br />
with a BRCA1 or BRCA2 mutation.<br />
The decision aid was developed to<br />
provide decision support to women<br />
with a BRCA1 or BRCA2 mutation<br />
regarding breast cancer prevention. We<br />
are currently testing the decision aid<br />
to determine if it is helpful for women<br />
who have recently learned that they<br />
6 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
carry a BRCA mutation. If you would<br />
like to participate in the study, please<br />
contact Julie Weston at Julie.weston@<br />
utoronto.ca for more information.<br />
Fortunately, there are breast cancer risk<br />
reduction options available to women<br />
with a BRCA1 or BRCA2 mutation.<br />
Women who are identified as having<br />
a BRCA1 or BRCA2 mutation are in a<br />
unique position in that they can reduce<br />
or eliminate their risk of developing<br />
breast cancer in the future. Although<br />
the decision about which preventive<br />
option to choose may be difficult for<br />
women, there are tools available to<br />
help. Ultimately, every woman with a<br />
BRCA1 or BRCA2 mutation can reduce<br />
their risk of developing breast cancer<br />
and feel satisfied with her decision. •<br />
References<br />
1. Ford D, Easton, D.F., Bishop, D.T., Narod,<br />
S.A., Goldgar, D.A. Risks of cancer<br />
in BRCA1 mutation carriers. Lancet<br />
1994;343(8899): 692-695.<br />
2. King MC, Wieand S, Hale K, Lee M, Walsh<br />
T, Owens K, et al. Tamoxifen and breast<br />
cancer incidence among women with<br />
inherited mutations in BRCA1 and BRCA2:<br />
National Surgical Adjuvant <strong>Breast</strong> and<br />
Bowel Project (NSABP-P1) <strong>Breast</strong> <strong>Cancer</strong><br />
Prevention Trial. Jama 2001;286(18):2251-<br />
6.<br />
3. Narod SA, Brunet JS, Ghadirian P, Robson<br />
M, Heimdal K, Neuhausen SL, et al.<br />
Tamoxifen and risk of contralateral breast<br />
cancer in BRCA1 and BRCA2 mutation<br />
carriers: a case-control study. Hereditary<br />
<strong>Breast</strong> <strong>Cancer</strong> Clinical Study Group.<br />
Lancet 2000;356(9245):1876-81.<br />
4. Hartmann LC, Sellers TA, Schaid DJ,<br />
Frank TS, Soderberg CL, Sitta DL, et<br />
al. Efficacy of bilateral prophylactic<br />
mastectomy in BRCA1 and BRCA2 gene<br />
mutation carriers. J Natl <strong>Cancer</strong> Inst<br />
2001;93(21):1633-7.<br />
5. Meijers-Heijboer M, VanGeel B, VanPutten<br />
W, Henzen-Logmans S, Seynaeve C,<br />
Menke-Pluymers M, et al. <strong>Breast</strong> cancer<br />
after prophylactic bilateral mastectomy<br />
in women with a BRCA1 or BRCA2<br />
mutation. The New England Journal of<br />
Medicine 2001;345(3):158-164.<br />
6. Hartmann LC, Schaid DJ, Woods JE,<br />
Crotty TP, Myers JL, Arnold PG, et<br />
al. Efficacy of Bilateral Prophylactic<br />
Mastectomy in Women with a<br />
Family History of <strong>Breast</strong> <strong>Cancer</strong>. The<br />
New England Journal of Medicine<br />
1999;340(2):77-85.<br />
7. Metcalfe KA, Esplen MJ, Goel V, Narod S.<br />
Psychosocial functioning in women who<br />
have undergone bilateral prophylactic<br />
mastectomy. Psychooncology<br />
2004;13:14-25.<br />
8. Frost MH, Schaid DJ, Sellers TA, Slezak JM,<br />
Arnold PG, Woods JE, et al. Long-term<br />
satisfaction and psychological and social<br />
function following bilateral prophylactic<br />
mastectomy. Jama 2000;284(3):319-24.<br />
9. Hatcher MB, Fallowfield L, A’Hern<br />
R. The psychosocial impact of<br />
bilateral prophylactic mastectomy:<br />
prospective study using questionnaires<br />
and semistructured interviews. Bmj<br />
2001;322(7278):76.<br />
10. Rebbeck TR, Lynch HT, Neuhausen SL,<br />
Narod SA, Van’t Veer L, Garber JE, et al.<br />
Prophylactic oophorectomy in carriers of<br />
BRCA1 or BRCA2 mutations. N Engl J Med<br />
2002;346(21):1616-22.<br />
11. Olivier RI, van Beurden M, Lubsen MA,<br />
Rookus MA, Mooij TM, van de Vijver MJ,<br />
et al. Clinical outcome of prophylactic<br />
oophorectomy in BRCA1/BRCA2<br />
mutation carriers and events during<br />
follow-up. Br J <strong>Cancer</strong> 2004;90(8):1492-7.<br />
12. Rutter JL, Wacholder S, Chetrit A, Lubin F,<br />
Menczer J, Ebbers S, et al. Gynecologic<br />
surgeries and risk of ovarian cancer<br />
in women with BRCA1 and BRCA2<br />
Ashkenazi founder mutations: an Israeli<br />
population-based case-control study.<br />
J Natl <strong>Cancer</strong> Inst 2003;95(14):1072-8.<br />
13. Eisen A, Lubinski J, Klijn J, Moller P,<br />
Lynch HT, Offit K, et al. <strong>Breast</strong> cancer<br />
risk following bilateral oophorectomy in<br />
BRCA1 and BRCA2 mutation carriers: an<br />
international case-control study.<br />
J Clin Oncol 2005;23(30):7491-6.<br />
14. Pritchard KI. <strong>Breast</strong> cancer prevention<br />
with selective estrogen receptor<br />
modulators: a perspective. Ann N Y<br />
Acad Sci 2001;949:89-98.<br />
15. Fisher B, Costantino JP, Wickerham DL,<br />
Redmond CK, Kavanah M, Cronin WM,<br />
et al. Tamoxifen for prevention of breast<br />
cancer: report of the National Surgical<br />
Adjuvant <strong>Breast</strong> and Bowel Project P-1<br />
study. Journal of the National <strong>Cancer</strong><br />
Insitute 1998;90(18):1371-1388.<br />
16. Metcalfe K, Lynch HT, Ghadirian P,<br />
Tung N, Olivotto I, Warner E, et al.<br />
Contralateral breast cancer in BRCA1<br />
and BRCA2 mutation carriers. J Clin<br />
Oncol 2004;22(12):2328-35.<br />
Dr. Kelly Metcalfe is an Associate<br />
Professor at the Faculty of Nursing,<br />
University of Toronto. As an Adjunct<br />
Scientist she is part of the team of<br />
investigators at the Familial <strong>Breast</strong><br />
<strong>Cancer</strong> Research Unit of WCRI including<br />
Director, Steven Narod, and Scientist<br />
Joanne Kotsopoulos. Dr. Metcalfe holds<br />
a New Investigator Award from the<br />
<strong>Canadian</strong> Institutes of Health Research<br />
and has received the Excellence in <strong>Cancer</strong><br />
Prevention and Early Detection Award<br />
from the Oncology Nursing Society.<br />
Dr. Metcalfe serves on the research<br />
advisory committee for the <strong>Canadian</strong><br />
Association of Psychosocial Oncology. Dr.<br />
Metcalfe’s current research focuses on the<br />
prevention and treatment of hereditary<br />
breast cancer. She has published extensively<br />
on the psychosocial implications of cancer<br />
preventive options including prophylactic<br />
mastectomy and oophorectomy. She is<br />
currently the principal investigator on a<br />
study aiming to develop a decision aid for<br />
breast cancer prevention in BRCA1 and<br />
BRCA2 mutation carriers. Dr. Metcalfe is<br />
also the principal investigator on a study<br />
of Familial <strong>Cancer</strong> in Jewish Women,<br />
currently ongoing at the Women’s College<br />
Research Institute.<br />
Board of Directors<br />
Cathy Ammendolea, President, Quebec<br />
Alwyn Anderson, Alberta<br />
Nina Burford, Labrador,<br />
Member-at-Large<br />
Linda Dias, Greater Toronto Area (GTA)<br />
Diana Ermel, Past President,<br />
Saskatchewan<br />
Dianne Hartling, Treasurer,<br />
Ottawa-Gatineau<br />
Suzanne LeBlanc, New Brunswick<br />
Lorna Marshall, British Columbia<br />
Meeka Mearns, Nunavut<br />
Dianne Moore, Ontario<br />
Janis Murray, Secretary,<br />
British Columbia<br />
Pam Patten, Northwest Territories<br />
Mercedes Sellars, Newfoundland<br />
Pam Smith, Prince Edward Island<br />
Diane Spencer, Vice-President,<br />
Nova Scotia<br />
Sharon Young, Manitoba<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 7
My Story<br />
By Lorna Marshall<br />
I<br />
wish there were a mandatory course<br />
that all physicians took to deal with<br />
cancer screening and to learn how to<br />
tell someone they have cancer. From the<br />
time I turned 40, every couple of years<br />
I would ask my GP whether or not I<br />
needed to have a mammogram. Every<br />
year it was the same response: “You<br />
don’t need a mammogram until you<br />
turn 50, especially because you have no<br />
history of breast cancer in your family.”<br />
Then, I found a lump in my breast just<br />
after turning 48 and I knew immediately<br />
that it was cancer because of its size.<br />
Did she help me with booking the<br />
mammogram after I went to her about<br />
the lump? No, I had to use a pay phone<br />
in the middle of a retail mall and make<br />
the phone call myself. Only after bursting<br />
into tears when told that it would be<br />
four weeks before I could get in did the<br />
technician feel pity for me and booked<br />
me within that week. The mammogram<br />
was followed by an ultrasound and then<br />
my doctor’s office called to ask me to<br />
come in for the results.<br />
“I’ve been told to tell you that you<br />
have cancer” are the words my doctor<br />
used. “Told” to tell me. How about,<br />
“I’m very sorry but it looks like cancer<br />
and we will need to do a biopsy to be<br />
sure.” Then when I asked if it meant I<br />
would need to have a mastectomy she<br />
responded with, “Well it depends on<br />
how attached you are to your breast.”<br />
I met with a surgeon within a week,<br />
had a same-day biopsy and when I<br />
went back to the surgeon to receive<br />
the results, he made a phone call and<br />
had me see a plastic surgeon about<br />
reconstruction. He wanted to schedule<br />
surgery in ten days and I needed to<br />
make a decision. At this point, I was<br />
walking around in a complete fog.<br />
After discussing this with my family<br />
and friends I decided that I didn’t need<br />
to rush this decision – after all the<br />
cancer didn’t grow overnight – did it?<br />
I requested to be referred to a specialist<br />
in Kelowna, one whose field was<br />
breast cancer. This delayed everything<br />
by several weeks but I was much more<br />
confident with this new surgeon and<br />
the added bonus was that I would<br />
be having my surgery in Kelowna<br />
Hospital, where the B.C. Southern<br />
Interior <strong>Cancer</strong> Center is located. After<br />
the lumpectomy, the pathology report<br />
came back with both good and bad<br />
results. My cancer was diagnosed as<br />
triple-negative, invasive and Grade<br />
III but it had not spread to the lymph<br />
nodes.<br />
Lorna and Jay Marshall<br />
In November 2008, I started my chemo<br />
cocktail. At the end of February,<br />
two days before my fifth chemo<br />
treatment, my mother who lived in<br />
Ontario had a stroke. She was 88, the<br />
primary caregiver for my father who<br />
has dementia and I am an only child.<br />
There was no question that I would<br />
have to fly to Ontario. We moved my<br />
chemo up one day and I arranged for<br />
a live-in caregiver for my father and<br />
flew there right after my session. I still<br />
don’t know how “Dr. M.” did it, but<br />
one week after arriving in Ottawa I had<br />
an appointment with an oncologist to<br />
schedule my last chemo session. What<br />
a different experience! In Nelson, we<br />
had a maximum of six people receiving<br />
treatment at one time and there was a<br />
lot of talk and laughter. Yet, here I was<br />
alone in Ottawa, and in a room with<br />
36 strangers.<br />
I flew from Ottawa to Kelowna to<br />
commence my 20 radiation treatments.<br />
This meant that I had to live in<br />
Kelowna (350 kilometres from Nelson),<br />
for the six weeks of my treatments.<br />
Fortunately for me, I had a very<br />
good health benefit plan through the<br />
company I worked with, so the costs<br />
associated with living there were<br />
covered. Without my health benefit<br />
plan, it would have been a large<br />
financial burden on my family.<br />
In August 2008, I was told that my<br />
breast cancer had returned – it was<br />
in my sternum. The message was<br />
delivered differently this time, mainly<br />
because it came from another doctor.<br />
She called me at home to tell me, but<br />
only after she had called my radiation<br />
oncologist in Kelowna to find out<br />
where we would go from here. She<br />
was able to tell me radiation was<br />
unlikely because that spot had been<br />
previously radiated. She also told me<br />
which blood tests she would arrange<br />
and she called Dr. M. to get me in as<br />
soon as possible for chemo.<br />
I had a Portacath inserted on<br />
September 3 rd and my first chemo was<br />
on September 4 th .<br />
I did quite a bit of research and found<br />
that because I had triple negative<br />
breast cancer there was a high<br />
likelihood that I had the BRAC1 or 2<br />
gene mutation. As this could affect<br />
my treatment, at the end of September<br />
2008 I submitted the necessary forms<br />
to the British Columbia <strong>Cancer</strong> Agency<br />
(BCCA) Hereditary <strong>Cancer</strong> Program<br />
to request genetic testing. I was told<br />
it could take up to 18 months for the<br />
results. I decided to pay for the genetic<br />
test myself (3100.00 USD) as I wanted<br />
to be aggressive with this cancer. I had<br />
the results within three weeks and<br />
they revealed that I had a mutation<br />
but it was an “unclassified” mutation.<br />
Meaning, the genetics experts do not<br />
know what it really means or how it<br />
could affect me.<br />
I didn’t want to stop the process<br />
through the BCCA so I met with a<br />
genetic counsellor from the Hereditary<br />
Program at the end of March 2009 and<br />
she approved the genetic test but said<br />
it would likely take twelve months for<br />
me to get the results. I’m still waiting.<br />
In January 2009, we discovered that<br />
after six rounds of chemo the cancer<br />
had progressed. As a result of my<br />
research, I knew that “Dr. G.” was<br />
conducting a clinical trial in Vancouver<br />
on patients who had triple negative<br />
cancer in addition to a BRCA1 gene<br />
mutation. I met with her at the end of<br />
8 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
January 2009 and after several scans<br />
(CT, PET and MRI), Dr. G said she<br />
would accept me into the trial. If I had<br />
not received my genetic test, I would<br />
not have been eligible for the trial.<br />
My CT scan this past September<br />
indicated that my cancer was potentially<br />
progressing. I convinced Dr. G. to keep<br />
me on the trial for another month while<br />
I had a PET scan to confirm the growth,<br />
as CT scans are not always that easy<br />
to read. Unfortunately, the cancer was<br />
growing and so I was taken out of the<br />
clinical trial. I started my third chemo<br />
cocktail on October 28 th and we are<br />
hopeful that this will stop the growth.<br />
<strong>Cancer</strong> has changed who I am.<br />
Previous to the diagnosis I was a<br />
career-driven individual who didn’t<br />
make enough time for my family,<br />
friends, or even myself. I didn’t have<br />
any time to give back to the community<br />
and now I’m proud to say I’m on the<br />
Board of Directors for the <strong>Canadian</strong><br />
<strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> (CBCN).<br />
I have told many people that cancer<br />
has changed my life for the better.<br />
They find that hard to believe until<br />
I explain what has happened. I now<br />
appreciate every single day, I’ll spend<br />
hours over coffee or at lunch with<br />
friends, just about all phone calls end<br />
with an “I love you,” I spend hours<br />
floating in the middle of the lake in my<br />
kayak and I’m just too busy to return<br />
to work. I couldn’t get through what I<br />
have without the unfailing support of<br />
my husband; he has been my pillar of<br />
strength. Although I know it’s a cliché,<br />
I can honestly say that this former<br />
Type A personality no longer “sweats<br />
the small stuff”. •<br />
I was born, raised and graduated from high<br />
school in Carleton Place, Ontario – a small<br />
town outside of Ottawa. After working<br />
several years in Ottawa, I decided to take<br />
a Restaurant and Hotel Management<br />
diploma program at Algonquin College.<br />
That led me to positions in Calgary and<br />
Ottawa working with the Four Seasons,<br />
Delta and Travelodge chains.<br />
A chance phone call from a friend of a friend<br />
led me to apply for a teaching position in<br />
the Resort and Hotel Management program<br />
at Selkirk College in Nelson, B.C. We have<br />
been in Nelson for close to twenty years and<br />
we love this community.<br />
I have volunteered with Relay for Life, am<br />
a breast cancer support person, and am<br />
on the Board of CBCN. My involvement<br />
with CBCN has led me to participate<br />
in a workshop in L.A. sponsored by the<br />
National <strong>Breast</strong> <strong>Cancer</strong> Coalition on breast<br />
cancer advocacy. I have just recently<br />
been hired as a novice peer reviewer<br />
with Systems and Research Applications<br />
International (SRA). SRA manages money<br />
set aside for breast cancer research from the<br />
Department of Defense in the U.S.A.<br />
Continued from Page 5<br />
Executive Director’s Report<br />
Participants recognized and<br />
appreciated the leadership role<br />
that CBCN provided in bringing<br />
together organizations throughout<br />
the region for the meeting, and they<br />
expressed hope that the collaborative<br />
work could continue through future<br />
meetings.<br />
Western/Northern Regional<br />
Meeting<br />
The Western/Northern Regional<br />
Meeting was held in early November<br />
2009 in Calgary. Participants from<br />
across the region were invited, and<br />
representatives from Saskatchewan,<br />
Alberta, British Columbia, Yukon,<br />
Northwest Territories and Nunavut<br />
attended. Participants included<br />
CBCN Board members, survivors,<br />
representatives from provincial and<br />
territorial breast and women’s cancer<br />
networks, representatives from<br />
regional breast and women’s cancer<br />
organizations, and representatives<br />
from other organizations interested in<br />
women’s health.<br />
One of the most exciting outcomes<br />
of this meeting was the formation<br />
of a Northern <strong>Network</strong>, consisting<br />
of Nunavut, Northwest Territories<br />
and Yukon, with the <strong>Canadian</strong><br />
<strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> as an<br />
additional member providing<br />
assistance and mentorship. There<br />
was also interest in creating a new<br />
breast cancer network in Alberta.<br />
The Central Regional Meeting was<br />
held in early March <strong>2010</strong>, with<br />
representatives from Manitoba,<br />
Ontario and Quebec attending.<br />
Copies of the reports of the<br />
Stakeholder Consultation and the<br />
<strong>Breast</strong> & Women’s <strong>Cancer</strong>s regional<br />
meetings are available in English<br />
and French. Contact Jenn McNeil,<br />
Project Coordinator, at jmcneil@<br />
cbcn.ca or 1-800-685-8820 ext. 224.<br />
Order the Intimacy and Sexuality<br />
Workshop Manual and CD<br />
PowerPoint Presentation<br />
CBCN has completed its one-day<br />
Intimacy and Sexuality Workshop<br />
for young survivors, in collaboration<br />
with Dr. Sally Kydd, co-author of<br />
Intimacy after <strong>Cancer</strong>: A Woman’s<br />
Guide. A printed facilitator’s<br />
manual and a CD containing the<br />
PowerPoint are now available in<br />
English and French to organizations<br />
across Canada. Due to the nature<br />
of the material, workshops must be<br />
facilitated by qualified professionals.<br />
We are prioritizing organizations<br />
which intend to actively use<br />
the workshop with their clients.<br />
Workshops must be offered free<br />
of charge. Please send expressions<br />
of interest to Contact Jenn McNeil,<br />
Project Coordinator, at jmcneil@cbcn.<br />
ca or 1-800-685-8820 ext. 224. •<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 9
View CBCN Webinars Online<br />
CBCN has hosted Webinars in the past couple<br />
of months that are currently available online.<br />
Healthy Lifestyle Choices for <strong>Breast</strong> <strong>Cancer</strong><br />
Survivors, Part 1: Nutrition and <strong>Breast</strong> <strong>Cancer</strong><br />
Exciting new research is emerging on the role of diet,<br />
exercise and healthy body weights in women with breast<br />
cancer. This informative 1-hour session provided the latest<br />
evidence on the role of lifestyle choices in improving your<br />
quality of life and reducing the risk of cancer recurrence.<br />
One half hour was allotted for questions at the end of<br />
the Webinar. The Webinar was presented by Cheri Van<br />
Patten, Registered Dietitian and Researcher at BC <strong>Cancer</strong><br />
Agency.<br />
Participants learned about:<br />
• The latest evidence on soy<br />
• About the link between vitamin D and breast cancer<br />
• The importance of a healthy body weight<br />
• How much alcohol is safe to drink<br />
• How a low fat diet effects cancer recurrence<br />
• The benefits of exercise after diagnosis<br />
• Where to find credible sources of information and<br />
resources<br />
Healthy Lifestyle Choices for <strong>Breast</strong> <strong>Cancer</strong><br />
Survivors - Part 2:<br />
One-hour question and answer period<br />
Due to the overwhelming response to the Nutrition and<br />
<strong>Breast</strong> <strong>Cancer</strong> Webinar, the <strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong><br />
<strong>Network</strong> hosted a follow up question & answer Webinar,<br />
presented by Cheri Van Patten.<br />
<strong>Breast</strong> <strong>Cancer</strong> Surgery and Lymphedema:<br />
Are You at Risk?<br />
<strong>Breast</strong> cancer surgery can leave you vulnerable for<br />
developing lymphedema up to 30 years after treatment.<br />
The Webinar was presented by Judy Bedell, <strong>Breast</strong> <strong>Cancer</strong><br />
Action Ottawa’s Lymphedema Educator Leader.<br />
Contents include:<br />
• The facts about lymphedema<br />
• How to self-monitor<br />
• Important lifestyle recommendations<br />
• When / where to go for help<br />
• Exercises to delay the onset of/ or to manage<br />
lymphedema<br />
• Where to get a set of Lymphedema Alert Bracelets<br />
Program Evaluation: Where do we start?<br />
The purpose of this webinar was to increase<br />
effectiveness in planning for and participating in<br />
evaluation. Program Evaluation is an organized method<br />
of collecting and analyzing information about program<br />
activities, characteristics and outcomes to measure<br />
program effectiveness and provide input into program<br />
improvement. This Webinar was facilitated by<br />
Patsy Beattie-Huggan, president of The Quaich in<br />
Charlottetown, PEI.<br />
Contents include:<br />
• How to decide whether to evaluate or not<br />
• Different evaluation approaches and methods<br />
• How to design an evaluation<br />
• How to analyze the information<br />
• How to report the evaluation findings<br />
Proposal Writing<br />
Alanna LaPerle was the facilitator for this session; she<br />
is a consultant with over 20 years experience in nonprofit<br />
and public sector marketing, communications<br />
and program planning. She provides a range of services<br />
that include grant writing, marketing research, social<br />
marketing, program planning and evaluation, and<br />
development of marketing-communication resources.<br />
Contents include:<br />
• How to adopt a marketing approach to grant<br />
writing<br />
• A step by step guide to putting a proposal together<br />
Please Note: To properly view these Webinars you will<br />
need to have Windows Media Player or Real Player on<br />
your computer as well as speakers hooked up for audio.<br />
To view these webinars, please go to:<br />
www.cbcn.ca/en/index.php?section=3&category=2219&<br />
regionid<br />
Alternatively, please go to “webinars” in the resources<br />
section of the CBCN website: www.cbcn.ca<br />
For more info on any of these Webinars, contact Jenn<br />
McNeil, Project Coordinator, jmcneil@cbcn.ca. •<br />
10 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
What is BRCA?<br />
By Dawna M. Gilchrist, MD, FRCPC, FCCMG, DHMSA<br />
What are BRCA1 and BRCA2?<br />
BRCA1 and BRCA2 are human genes<br />
that belong to a class of genes known as<br />
tumor suppressors.<br />
In normal cells, BRCA1 and BRCA2<br />
help ensure the stability of the cell’s<br />
genetic material (DNA) and help<br />
prevent uncontrolled cell growth.<br />
Mutation of these genes has been<br />
linked to the development of<br />
hereditary breast and ovarian cancer.<br />
The names BRCA1 and BRCA2 stand<br />
for breast cancer susceptibility gene 1<br />
and breast cancer susceptibility gene 2,<br />
respectively.<br />
In the general population,<br />
approximately 1 in 8 women (12%)<br />
will develop breast cancer and 1.5-2%<br />
will develop ovarian cancer in her<br />
lifetime. Only 5-10% of breast and<br />
ovarian cancer is hereditary, that is,<br />
due to mutations in specific cancer<br />
susceptibility genes.<br />
How do people know if they should<br />
consider genetic counselling for<br />
BRCA1 and BRCA2 mutations?<br />
The likelihood of a harmful mutation<br />
in BRCA1 or BRCA2 is increased with<br />
certain familial patterns of cancer.<br />
These patterns include the following:<br />
For women of Ashkenazi Jewish descent:<br />
• Any first-degree relative<br />
diagnosed with breast or ovarian<br />
cancer and<br />
• Two second-degree relatives on the<br />
same side of the family diagnosed<br />
with breast or ovarian cancer<br />
These family history patterns apply<br />
to about 2% of adult women in the<br />
general population. Women who have<br />
none of these family history patterns<br />
have a low probability of having a<br />
harmful BRCA1 or BRCA2 mutation.<br />
In a family with a history of breast<br />
and/or ovarian cancer, it may be most<br />
informative to first test a family member<br />
who has breast or ovarian cancer. If<br />
that person is found to have a harmful<br />
BRCA1 or BRCA2 mutation, then other<br />
family members can be tested to see if<br />
they also have the mutation.<br />
Regardless, women who have a<br />
relative with a harmful BRCA1 or<br />
BRCA2 mutation and women who<br />
appear to be at increased risk of breast<br />
and/or ovarian cancer because of their<br />
family history should consider genetic<br />
counselling to learn more about their<br />
potential risks and about BRCA1 and<br />
BRCA2 genetic tests.<br />
BRCA1<br />
Women with BRCA1 mutations have,<br />
by age 70, an average cumulative<br />
breast cancer risk of approximately<br />
57% (47%-66%). Approximately half<br />
develop breast cancer by the age of<br />
50. By age 70, there is an average<br />
cumulative ovarian cancer risk of<br />
approximately 40% (35%-46%), and<br />
this risk starts to significantly increase<br />
in the 30’s.<br />
Risk for Manifesting <strong>Breast</strong> <strong>Cancer</strong><br />
per Decade:<br />
Age %<br />
20-30 3.6<br />
30-40 14.0<br />
40-50 31.0<br />
50-60 15.0<br />
60-70 7.0<br />
Men with BRCA1 mutations are only<br />
at a slightly increased lifetime risk for<br />
prostate cancer and breast cancer.<br />
BRCA2<br />
Dr. Dawna M. Gilchrist<br />
Women with BRCA2 mutations have,<br />
by age 70, an average cumulative<br />
breast cancer risk of approximately<br />
49% (40%-57%). Approximately one<br />
in three women will develop breast<br />
cancer by age 50. By age 70, there is an<br />
average cumulative ovarian cancer risk<br />
of approximately 18% (13%-23%), and<br />
this risk starts to significantly increase<br />
in the 40’s.<br />
Risk for Manifesting <strong>Breast</strong> <strong>Cancer</strong><br />
per Decade:<br />
Age %<br />
20-30 0.6<br />
30-40 12.0<br />
40-50 36.0<br />
50-60 20.0<br />
60-70 36.0<br />
Men with BRCA2 mutations are at<br />
a three times increased lifetime risk<br />
for prostate cancer (compared to<br />
12% in the general population). The<br />
lifetime risk for male breast cancer is<br />
approximately 6%.<br />
Risk of a Second Primary<br />
<strong>Breast</strong> <strong>Cancer</strong><br />
The risk for another primary breast<br />
cancer is up to five times higher with<br />
a BRCA1/2 mutation (as compared to<br />
sporadic breast cancer), with a lifetime<br />
risk of 40-50% by age 70. The risk for a<br />
second primary breast cancer may be<br />
reduced by previous treatment with<br />
Tamoxifen and/or previous treatment<br />
with chemotherapy that produces<br />
menopause.<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 11
Other Risks<br />
Rare families with BRCA1/2 mutations<br />
may report an increased incidence of<br />
pancreatic cancer and melanoma.<br />
Inheritance<br />
BRCA1 or BRCA2 mutations are<br />
inherited in an autosomal dominant<br />
pattern. That is, an individual who<br />
carries one of these mutations has a<br />
50% risk of passing it on to any child,<br />
whether the child is male or female.<br />
Monitoring in Individuals with a<br />
BRCA1 or BRCA2 mutation<br />
Note: May be modified for previous<br />
surgery/treatment and current health<br />
status<br />
1. Monthly self-breast exam<br />
(including males), from age 18<br />
2. Twice yearly physician breast<br />
exam (including males), from age<br />
25<br />
3. Yearly mammogram, from age<br />
25-30. This can also be done on<br />
males with breast enlargement<br />
(gynecomastia). Based on the<br />
mammogram, the radiologist<br />
may recommend ultrasound<br />
and/or MRI to some individuals<br />
4. Twice yearly pelvic exam<br />
with CA-125 measurement<br />
and transvaginal ultrasound<br />
for females, from age 35.<br />
Unfortunately, this screening has<br />
many false positives and false<br />
negatives<br />
5. Yearly digital rectal exam and<br />
PSA measurement for males,<br />
from age 50<br />
6. Other screening as indicated by<br />
family history<br />
Prevention –<br />
Surgery and Chemoprevention<br />
The program is designed to offer cancer risk assessment,<br />
genetic counselling and, when appropriate, arrange genetic<br />
testing in patients at high risk for hereditary cancer (cancer<br />
associated with mutations in known cancer susceptibility genes).<br />
Contact:<br />
By Phone: (780) 407-7333<br />
By Fax: (780) 407-6845<br />
By Mail: Medical Genetics Clinic<br />
University of Alberta<br />
8-53 Medical Sciences Building<br />
Edmonton, Alberta T6G 2H7<br />
Consideration of preventive<br />
(prophylactic) bilateral total<br />
mastectomy, with or without<br />
reconstruction, may be considered<br />
by women with BRCA1 or BRCA2<br />
mutations. This reduces the risk<br />
of breast cancer by up to 90%.<br />
Prophylactic oophorectomy (removal<br />
of the ovaries) should be considered<br />
by women with BRCA1 or BRCA2<br />
mutations, ideally between the<br />
ages of 35-40, or upon completion<br />
of child-bearing. The risk for<br />
breast cancer is reduced by up to<br />
50% by oophorectomy in the 30’s.<br />
Oophorectomy, at any age, reduces<br />
the risk for ovarian cancer by up to<br />
95%. The remaining risk is for primary<br />
peritoneal carcinomatosis (cancer of<br />
the lining of the pelvic cavity).<br />
As most BRCA1 tumours are hormone<br />
receptor negative, it is unlikely that<br />
the prophylactic use of Tamoxifen or<br />
Raloxifene would be of benefit. Most<br />
BRCA2 tumours are estrogen receptor<br />
positive. Therefore, the prophylactic<br />
use of Tamoxifen or Raloxifene may<br />
be of benefit to carriers of BRCA2<br />
mutations, particularly if they are post-<br />
menopausal. This should be discussed<br />
with the family doctor, gynecologist or<br />
oncologist. •<br />
References<br />
National Comprehensive <strong>Cancer</strong> <strong>Network</strong><br />
(www.nccn.org).<br />
Meta-Analysis of BRCA1 and BRCA2<br />
Penetrance. J Clin Onc 25(11):<br />
1329-1333, 2007.<br />
Dr. Dawna M. Gilchrist, M.D., FRCPC,<br />
FCCMG, DHMSA; has been on staff with<br />
the Faculty of Medicine and Dentistry at<br />
the University of Alberta (UofA) since<br />
1990. Currently, she is a Clinician-<br />
Teacher for UofA’s Department of Medical<br />
Genetics and is an Adjunct Professor for<br />
both the Department of Medicine and<br />
the Department of Pediatrics. She also<br />
serves as the Director for the university’s<br />
History of Medicine Program. Dr.<br />
Gilchrist first attended the University of<br />
Alberta, graduating in 1972 in Biology,<br />
and then continued there to obtain her<br />
BSc. Specialization in Genetics (1979) and<br />
M.D. (1983). Additionally, she received<br />
her diploma in the history of medicine from<br />
the Society of Apothecaries in London, UK<br />
(2002). Dr. Gilchrist’s areas of expertise<br />
include genetic disorders of adult onset;<br />
particularly, genetic cancer, inherited<br />
disorders of connective tissue and inherited<br />
neurodegenerative disorders. She is a<br />
fellow of the <strong>Canadian</strong> College of Medical<br />
Geneticists.<br />
In Edmonton, How to Obtain Referral to the<br />
Edmonton <strong>Cancer</strong> Genetics Clinic<br />
Clinic Protocol<br />
1. Referral (letter preferred) by specialist or primary<br />
care physician to the <strong>Cancer</strong> Genetics Clinic.<br />
2. Preliminary workup by us – pedigree construction<br />
and obtaining/reviewing medical records.<br />
3. Appointment made with patient/family.<br />
4. First appointment. Contents to include: assessment of<br />
hereditary cancer risk in patient/family; discussion of<br />
potential molecular testing including risks/benefits/<br />
limitations; recommendations for clinical management.<br />
Letter sent to patient(s), referring physician, and other<br />
physician(s) as designated by patient.<br />
12 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
5. Where possible, and if patient/family interested,<br />
genetic testing proceeds. Except in VERY exceptional<br />
circumstances, this testing is possible only if there is a<br />
living cancer survivor in the family, and this individual<br />
is willing to participate.<br />
6. Results relayed back to patient/family in second<br />
appointment. Further discussion of genetic cancer<br />
risk in patient/family; recommendations for<br />
clinical management. Letter sent to patient(s),<br />
referring physician, and other physician(s) as<br />
designated by patient.<br />
7. If a pathogenic mutation is identified, other family<br />
members may request counselling/testing.<br />
Referral Criteria – Hereditary <strong>Breast</strong> or <strong>Breast</strong>-<br />
Ovarian <strong>Cancer</strong><br />
1. Relatives of an individual with a confirmed<br />
pathogenic BRCA1 or BRCA2 mutation.<br />
<strong>Breast</strong> <strong>Cancer</strong><br />
1. Personal history of breast cancer diagnosed before<br />
age 40.<br />
2. Personal history of breast cancer diagnosed before<br />
age 50, AND a first or second degree relative with<br />
breast cancer diagnosed before age 50.<br />
3. Personal history of breast cancer, AND two related<br />
family members with breast cancer diagnosed at<br />
any age, spanning two generations.<br />
4. Personal history of more than one primary breast<br />
cancer, one diagnosed before age 50.<br />
5. Personal history of “triple negative” tumour<br />
(ER-ve, PR-ve, Her2-ve), diagnosed before age 50<br />
Ovarian <strong>Cancer</strong><br />
1. Personal history of invasive serous ovarian cancer<br />
diagnosed at any age.<br />
2. Personal history of ovarian cancer* diagnosed before<br />
age 50.<br />
3. Personal history of ovarian cancer* diagnosed at<br />
any age, AND a first or second degree relative<br />
diagnosed with ovarian cancer* at any age.<br />
*ovarian cancer refers to invasive non-mucinous epithelial<br />
ovarian cancer, and includes primary peritoneal cancers<br />
and primary fallopian tube cancers.<br />
<strong>Breast</strong> and Ovarian <strong>Cancer</strong><br />
1. Personal history of both breast and ovarian cancer*<br />
diagnosed at any age.<br />
2. Personal history of breast cancer diagnosed before<br />
age 50 AND a first or second degree relative with<br />
ovarian cancer* at any age.<br />
3. Personal history of male breast cancer diagnosed<br />
before age 65<br />
Ashkenazi Jewish Ancestry<br />
1. Personal history of breast or ovarian cancer*<br />
diagnosed any age (genetic testing is limited to the<br />
Ashkenazi mutation panel followed by a full screen<br />
ONLY for individuals who meet another criteria).<br />
2. Unaffected individuals with a first degree relative<br />
with breast cancer diagnosed before age 50, ovarian<br />
cancer* diagnosed at any age, male breast cancer<br />
diagnosed at any age, or multiple related relatives<br />
with breast and/or ovarian cancer*diagnosed at<br />
any age (genetic testing is limited to the Ashkenazi<br />
mutation panel ONLY).<br />
Other<br />
1. Families who have a significant clustering (above<br />
general population prevalence) of breast and/or<br />
ovarian cancer, but who do NOT meet above<br />
criteria (for assessment only).<br />
Referral Criteria – Hereditary Colorectal <strong>Cancer</strong><br />
1. Relatives of an individual with a confirmed<br />
pathogenic FAP or Lynch (HNPCC) mutation<br />
Familial Adenomatous<br />
Polyposis (FAP)<br />
1. Firm, clinical diagnosis of FAP in patient or firstdegree<br />
relative<br />
Ashkenazi Jewish Ancestry<br />
1. Any individual of Ashkenazi Jewish descent with a<br />
personal or family history of colorectal cancer<br />
in a first degree relative may be tested for the APC<br />
mutation I1307K.<br />
Lynch Syndrome (formerly known as Hereditary Non-<br />
Polyposis Colorectal <strong>Cancer</strong> (HNPCC)**<br />
1. Three family members with colorectal or<br />
colorectal PLUS related cancer (stomach, pancreas,<br />
gallbladder, endometrium, ovary, kidney, ureter,<br />
bladder, small bowel) ie. Modified Amsterdam<br />
Criteria. One cancer must be diagnosed under<br />
the age of 50; one affected individual must be a<br />
first degree relative of the other two; at least two<br />
successive generations must be affected.<br />
2. Tumour IHC results suggestive of a germline<br />
mutation in the patient or deceased first degree<br />
relative.<br />
** Individuals meeting Bethesda criteria for possible Lynch<br />
Syndrome should first have MSI (microsatellite instability)<br />
and/or IHC (immunohistochemistry) testing on their<br />
tumour(s). These tests of performed by pathology.<br />
Referral Criteria – Other Specific Hereditary<br />
<strong>Cancer</strong> Syndromes<br />
1. Individuals/families with suspected or known<br />
hereditary cancer syndromes (such as Multiple<br />
Endocrine Neoplasia, von Hippel-Lindau<br />
syndrome, Li-Fraumeni, other)<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 13
Referral Criteria – Other<br />
<strong>Cancer</strong> is common in the general population. Certain<br />
family characteristics may raise concern for hereditary<br />
cancer:<br />
1. Two or more cases of an uncommon cancer in first<br />
and/or second degree relatives<br />
2. <strong>Cancer</strong> that is diagnosed much younger than<br />
usual, where there is another cancer<br />
of the same type, at any age, in a first and/or<br />
second degree relative<br />
3. Clustering of cancer in a family, significantly<br />
above expected for the size of family<br />
Exceptions:<br />
a. Lung – almost always due to personal or secondhand<br />
smoking, or environmental exposure<br />
b. Cervical – almost always due to a viral infection •<br />
If you are uncertain about whether a patient/family may be at risk<br />
for hereditary cancer, please contact 780-407-7333 and speak to the<br />
genetic counsellor or Dr. D Gilchrist.<br />
The Hereditary <strong>Breast</strong> and Ovarian<br />
<strong>Cancer</strong> Foundation Third International<br />
Symposium on BRCA in Montreal in<br />
October 2009<br />
This past fall, over 400 participants<br />
from all corners of the globe<br />
gathered in Montreal for the<br />
Hereditary <strong>Breast</strong> and Ovarian <strong>Cancer</strong><br />
Foundation (HBOC) 3rd International<br />
Symposium on BRCA themed 15 Years<br />
of Progress. Attendees participated<br />
in three days of lectures and<br />
workshops given by over 40 faculty<br />
from around the world. Over one<br />
hundred carriers and their families<br />
had a full day of sessions devoted<br />
to their needs given by international<br />
experts. Topics included: ways to<br />
modify risk; managing menopause;<br />
communicating genetic risk to family<br />
members; the psychological impact<br />
of living with BRCA; an update on<br />
breast reconstruction; and practicing mindfulness. Clinicians,<br />
researchers and genetic counsellors were updated on the<br />
role of PARP inhibitors in treating genetically linked breast<br />
and ovarian cancers; new breast cancer genes CHEK2 and<br />
PALB2; new prevention and screening strategies; and how to<br />
classify patients with newly discovered BRCA1 and BRCA2<br />
gene mutations. Over 90 new research studies were also<br />
presented. Planning is underway for the next meeting in<br />
October 2011. To review full information on the conference,<br />
please go to www.odon.ca/brca .<br />
In some <strong>Canadian</strong> populations, as many as 1 in 40 women<br />
have certain alterations in their basic genetic code,<br />
commonly referred to as BRCA mutations. In the absence<br />
of risk-reducing strategies, these women have as high as a<br />
90 percent lifetime risk of developing breast cancer, and a<br />
40 percent lifetime risk of developing ovarian cancer. BRCA<br />
mutations are inherited, so this change in the genetic code<br />
may be passed from parents to children, putting future<br />
generations at risk.<br />
The Hereditary <strong>Breast</strong> and Ovarian <strong>Cancer</strong> Foundation<br />
(www.hboc.ca) is a community-oriented volunteer driven<br />
<strong>Canadian</strong> charity with a tripartite mission: Awareness,<br />
Action, and Research.<br />
Awareness: HBOC encourages families and their<br />
healthcare providers to become aware of their medical and<br />
disease histories and provides the resources to assess for<br />
hereditary breast and ovarian cancer risk.<br />
Action: HBOC provides women and their families, who are<br />
found to be at risk for hereditary breast and ovarian cancer,<br />
the information and the professional support they need to<br />
cope with and act on their state.<br />
Research: HBOC supports research that evaluates the<br />
outcomes of women with proven genetic risk of breast<br />
and ovarian cancer, as well as evaluation of different riskreducing<br />
modalities. HBOC equally encourages basic<br />
science research related to the genetics of breast and ovarian<br />
cancer.<br />
The Hereditary <strong>Breast</strong> and Ovarian <strong>Cancer</strong> Foundation<br />
seeks to fulfill its mission by working in cooperation with<br />
university or hospital-based programs in cancer genetics. •<br />
For more information, please call 1-514-482-8174, e-mail<br />
info@hboc.ca or visit their website at www.hboc.ca .<br />
Mailing address:<br />
Hereditary <strong>Breast</strong> and Ovarian <strong>Cancer</strong> Foundation<br />
PO Box 434, Snowdon<br />
Montreal, Quebec, H3X 3T7<br />
14 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
Hormone Therapy After Risk<br />
Reducing Oophorectomy –<br />
Helpful or Harmful?<br />
By Jodi Wilkie, B.Sc. Pharm.<br />
Menopausal symptoms<br />
and long-term<br />
health effects after<br />
oopherectomy<br />
In women with BRCA mutations,<br />
lifetime risk of breast and<br />
ovarian cancer is decreased with<br />
the removal of both ovaries and<br />
fallopian tubes. This surgery, known<br />
as risk-reducing Bilateral Salpingo-<br />
Oophorectomy (rrBSO), can lower<br />
lifetime breast cancer risk by about<br />
50%. Ovarian cancer risk may be<br />
reduced by as much as 80-95%. For<br />
maximum benefit, experts recommend<br />
that ovaries are removed after a<br />
woman has completed childbearing<br />
or by age 35. The benefit of rrBSO<br />
diminishes as age increases.<br />
Throughout a woman’s reproductive<br />
years, the ovaries make varying<br />
amounts of estrogen, progesterone<br />
and testosterone. Within days of<br />
rrBSO, levels of these hormones<br />
drop rapidly, throwing a woman<br />
into full-blown menopause. This<br />
sudden change in hormone levels can<br />
bring on a wide array of bothersome<br />
symptoms, including hot flashes, night<br />
sweats, sleep disturbances, mood<br />
symptoms, vaginal dryness and sexual<br />
dysfunction. Menopausal symptoms<br />
may be more frequent and/or severe<br />
initially compared to those experienced<br />
with a natural menopause.<br />
Loss of body estrogen before age 40 or<br />
45 may also impact long-term health.<br />
Estrogen helps to keep the heart and<br />
blood vessels healthy and maintains<br />
bone density. Early menopause is<br />
linked to an increased risk of heart<br />
disease and osteoporosis.<br />
Hormone Therapy basics<br />
Hormone Therapy (HT) replaces some<br />
of the hormones that the ovaries made<br />
before surgery. HT with estrogen<br />
(with or without progesterone) is the<br />
most effective remedy for moderate<br />
to severe menopausal symptoms. An<br />
analysis of 21 studies concluded that<br />
HT reduces hot flash frequency by<br />
77% and severity by 87% compared to<br />
placebo. 1 Nothing else works this well.<br />
HT can also help other menopausal<br />
symptoms. It improves sleep, which<br />
means less fatigue and irritability and<br />
fewer mood swings. Estrogen is a very<br />
effective treatment for symptoms of<br />
vaginal dryness. Women using HT<br />
may even feel an improved sense of<br />
well-being.<br />
The uterus may or may not be<br />
removed when the ovaries are<br />
removed. Removal of the uterus is<br />
called a hysterectomy. If a woman’s<br />
uterus is in place, she needs estrogen<br />
AND progesterone. If a woman’s<br />
uterus is removed, it is safe for her to<br />
use estrogen without progesterone.<br />
Use of estrogen alone by a woman<br />
who has a uterus may increase risk<br />
of cancer developing in the uterus.<br />
Progesterone lowers this risk.<br />
Hormone Therapy after rrBSO<br />
A woman must balance the potential<br />
survival benefit of rrBSO with the<br />
quality of life and long-term health<br />
effects of early menopause. The safety<br />
of HT after rrBSO is controversial.<br />
Estrogen may affect the risk of<br />
breast cancer in women with BRCA<br />
mutations. The worry is that HT may<br />
increase breast cancer risk or reverse<br />
the benefit gained with rrBSO.<br />
Jodi Wilkie<br />
Estrogen exposure is a recognized risk<br />
factor for breast cancer. <strong>Breast</strong> cancer<br />
risk increases slightly after four to<br />
five years of postmenopausal HT with<br />
estrogen and progesterone. There is<br />
less of an increase in breast cancer risk<br />
with use of estrogen alone. If a woman<br />
plans to use HT for symptomatic and<br />
health benefits after oophorectomy,<br />
removal of the uterus as well allows<br />
for use of estrogen alone.<br />
What the studies tell us<br />
The good news is that no studies<br />
have demonstrated an increased risk<br />
of breast cancer with HT after rrBSO.<br />
Unfortunately, few studies have been<br />
done, so data is limited.<br />
The Prevention and Observation of<br />
Surgical Endpoints (PROSE) study<br />
followed 462 BRCA 1 or 2 mutation<br />
carriers for 3.6 years. 2 155 of these<br />
women had rrBSO and following<br />
surgery 60% used HT. Seven percent of<br />
women who did not have rrBSO also<br />
used HT. The researchers found that<br />
breast cancer reduction was similar in<br />
women with BSO who did OR did not<br />
use HT. The conclusion reached in this<br />
study was that short-term HT does not<br />
negate the benefit of rrBSO on breast<br />
cancer risk reduction. In other words,<br />
short-term HT used to manage the<br />
immediate menopausal symptoms that<br />
occur after surgery may not increase<br />
the risk of breast cancer.<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 15
A more recent case-control study<br />
looked at 472 postmenopausal BRCA1<br />
mutation carriers. 3 Women who<br />
developed breast cancer (cases) were<br />
compared with women who didn’t<br />
(controls) and researchers tried to<br />
determine whether prior HT use had<br />
influenced cancer risk. They found<br />
that use of HT was not a risk factor<br />
for developing breast cancer. In fact,<br />
women who used estrogen alone had<br />
a lower risk of breast cancer compared<br />
to women who did not use estrogen<br />
at all. It is not known whether results<br />
from this study also apply to BRCA2<br />
mutation carriers. BRCA1 cancers are<br />
commonly negative for estrogen and<br />
progesterone receptors, so they may be<br />
affected less by hormones.<br />
A model was designed to calculate<br />
life expectancy gains after rrBSO<br />
in BRCA 1 or 2 mutation carriers<br />
between 30 and 40 years of age. 4<br />
Data used to calculate risk of breast<br />
cancer associated with HT was from a<br />
general population of postmenopausal<br />
women, not BRCA mutation carriers<br />
or women who had undergone rrBSO.<br />
The analysis found that HT did not<br />
change life expectancy gains of rrBSO<br />
if women stopped taking the hormones<br />
by age 50. In this model, the gain in life<br />
expectancy with rrBSO ranged from<br />
3.34 to 4.65 years, depending on age<br />
at oophorectomy. The change in life<br />
expectancy with HT ranged from +0.17<br />
years to -0.34 years when HT was<br />
stopped at age 50.<br />
Bioidentical Hormone Therapy<br />
There are many HT products available<br />
in Canada. Hormone therapy must<br />
be individualized based on the effect<br />
it has on symptoms and any adverse<br />
effects that occur. Different products<br />
can have different effects and what<br />
works well for one woman doesn’t<br />
necessarily work as well for another.<br />
Many women have heard about<br />
“Bioidentical Hormone Therapy”<br />
(BHT). It may be promoted as a<br />
safer, more natural type of HT.<br />
The term “bioidentical” refers to a<br />
hormone that has the same chemical<br />
structure as one produced by the<br />
body. Examples include estradiol,<br />
estrone, estriol, progesterone and<br />
testosterone. Bioidentical hormones<br />
are commercially available in several<br />
well-tested Health Canada approved<br />
prescription products. BHT may also<br />
refer to custom compounded HT<br />
preparations that are mixed up at a<br />
compounding pharmacy. All BHT<br />
products, whether commercially<br />
manufactured or custom compounded,<br />
may help symptoms of surgical<br />
menopause. There is still no strong<br />
evidence that one type or brand of<br />
estrogen is safer than the others when<br />
it comes to breast cancer risk.<br />
Vaginal estrogen and testosterone<br />
Women with symptoms of vaginal<br />
dryness may use a vaginal estrogen<br />
product. Absorption into the body<br />
is minimal at recommended doses.<br />
Vaginal estrogen may be used along<br />
with systemic HT if necessary.<br />
Women may be interested in using<br />
testosterone for low sexual desire.<br />
Whether testosterone should be<br />
replaced after rrBSO is controversial.<br />
Many things affect sexual function<br />
in women, including relationship<br />
factors, stress, fatigue and overall<br />
health. Estrogen therapy may improve<br />
sexual desire and response by<br />
improving blood flow to the vagina<br />
and increasing lubrication. There<br />
are no commercially manufactured<br />
testosterone products available in<br />
Canada for women due to lack of longterm<br />
safety and efficacy data. Effect of<br />
testosterone on breast cancer risk is not<br />
known.<br />
An individual decision<br />
Many aspects of the effects of HT on<br />
breast cancer risk in BRCA mutation<br />
carriers are unknown. Caution is still<br />
advised. If HT is “bioidentical,” this<br />
does not guarantee that it is a safer HT<br />
without risks. Women should decide<br />
about short-term HT based on quality<br />
of life issues and consider stopping<br />
HT around the time when natural<br />
menopause would have occurred.<br />
Most importantly, the decision<br />
whether or not to use HT following<br />
rrBSO is an individual one. •<br />
References<br />
1. MacLennan et al. Cochrane Database<br />
Syst Rev. 2004;18(4)<br />
2. Rebbeck et al. J Clin Oncol. Nov<br />
2005;23(31):7804-10<br />
3. Eisen et al. J Natl <strong>Cancer</strong> Inst. Oct<br />
2008;100(19):1361-7<br />
4. Armstrong et al. J Clin Oncol. Mar<br />
2004;22(6):1045-54<br />
Jodi Wilkie, B.Sc.Pharm., is a pharmacist<br />
and North American Menopause Society<br />
credentialed Menopause Practitioner.<br />
She obtained her Bachelor of Science<br />
in Pharmacy with distinction from the<br />
University of Alberta and worked for<br />
many years as a community pharmacist<br />
with Safeway Pharmacy. This is where<br />
she developed an interest in women’s<br />
health and pursued this as a specialty. Jodi<br />
currently works in outpatient Women’s<br />
Health clinics, including Menopause and<br />
Obstetric Medicine clinics, at the Grey<br />
Nuns and Royal Alexandra hospitals in<br />
Edmonton.<br />
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16 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
Knowledge is Power<br />
Interview with Jane Jankovic<br />
By Ovarian <strong>Cancer</strong> Canada<br />
Jane Jankovic “couldn’t roll up<br />
her sleeve fast enough” to get<br />
a blood test that would tell her<br />
if she was genetically predisposed<br />
to ovarian cancer – the disease that<br />
claimed the lives of her mother and<br />
grandmother.<br />
Yet once she learned – on 9/11 – that<br />
she carries a genetic mutation of the<br />
BRCA1 gene, it took the television<br />
producer two years to decide on a<br />
prophylactic oophorectomy – surgical<br />
removal of the ovaries and fallopian<br />
tubes in a bid to prevent ovarian<br />
cancer.<br />
Despite the fact that her lifetime risk of<br />
developing the disease was as high as<br />
40% and she was also at high risk for<br />
developing breast cancer, it took time<br />
for her to decide on a course of action.<br />
“I was playing the odds,” says Jane.<br />
Part of the delay involved coming to<br />
terms with not having children. She<br />
also didn’t want to be thrown into<br />
menopause at age 41.<br />
When she did opt for surgery, what<br />
she considered a tactical preventive<br />
move may have actually saved her life.<br />
After several analyses of her tissue,<br />
pathologists found Stage II serous<br />
ovarian cancer.<br />
“I didn’t feel anger. I didn’t feel scared.<br />
I felt relief,” recalls Jane. “I had lived<br />
with the threat of cancer for so many<br />
years that being able to focus on the<br />
enemy seemed simpler than living in<br />
fear of an ambush. Now that I knew I<br />
had it, I could focus.<br />
“In ovarian cancer, the cancer’s biggest<br />
advantage is that you don’t know it’s<br />
there until it’s too late. I was Stage<br />
II. And I knew it was there. The<br />
advantage was mine.”<br />
Within a week, Jane began<br />
chemotherapy followed by radiation<br />
therapy that was part of a clinical trial.<br />
That was in 2004 and Jane has been<br />
well ever since. She continues to be<br />
monitored for recurrence and screened<br />
for breast cancer.<br />
Jane Jankovic<br />
Women who are diagnosed with<br />
early-stage ovarian cancer and treated<br />
have survival rates as high as 80% to<br />
90%. Unfortunately, due to a lack of<br />
a screening test for the disease, most<br />
women are diagnosed in the late<br />
stages when survival rates can be as<br />
low as 20%.<br />
Jane is grateful for genetic counselling<br />
and testing – something that was not<br />
available when her grandmother and<br />
mother were alive. The BRCA1 and<br />
BRCA2 genes were identified in the<br />
mid-1990s after both of these women<br />
had died. When genetic counselling<br />
and testing were available in the new<br />
millennium, Jane took advantage of<br />
these advances.<br />
“I didn’t have to think about doing the<br />
test at all,” she says. “I was not one<br />
of those people who was squeamish<br />
about knowing. I wanted to know so I<br />
could then make an informed decision<br />
about what I could potentially do to<br />
improve my chances of not getting<br />
ovarian cancer. For me, it was all winwin<br />
to know.”<br />
While she appreciates the fact that<br />
testing may not be for everybody,<br />
Jane is a person who “wants all of<br />
the information all of the time. I<br />
think it’s one thing to be afraid of<br />
having a genetic predisposition if<br />
there’s nothing you can do with<br />
that knowledge. But being tested for<br />
BRCA1 or 2 does give you an option to<br />
be preventative as much as possible.”<br />
Jane recently celebrated her 50 th<br />
birthday and over the years she has<br />
learned hard lessons about life and<br />
death, especially that “there are no<br />
guarantees.”<br />
Not only has she lost her mother and<br />
grandmother to ovarian cancer, but<br />
her father died of a heart attack weeks<br />
after receiving a clean bill of health<br />
from his cardiologist. “And my sister<br />
went to emergency with chest pains<br />
and was diagnosed with flu. She died<br />
from heart failure the next day.”<br />
Despite these experiences, Jane<br />
remains grateful for the advances that<br />
have allowed her to make decisions<br />
that keep her healthy and active. She<br />
encourages those who are eligible for<br />
genetic counselling to take advantage<br />
of it so they can decide whether or not<br />
to be tested.<br />
“This experience taught me that I can’t<br />
control everything that happens to<br />
me but I can control my response,”<br />
says Jane. “I think cancer patients<br />
can sometimes describe themselves<br />
as powerless and vulnerable. I would<br />
flip that around and say, it’s taught<br />
me that I have a lot more power than I<br />
thought I had.” •<br />
Jane Jankovic has been a producer<br />
with TVO for 15 years. A survivor of<br />
hereditary ovarian cancer, she volunteers<br />
with Ovarian <strong>Cancer</strong> Canada as a public<br />
speaker and media spokesperson.<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 17
Hereditary <strong>Breast</strong> & Ovarian<br />
<strong>Cancer</strong> Society of Alberta<br />
8th Annual Fall 2009 Conference<br />
The Hereditary <strong>Breast</strong> & Ovarian <strong>Cancer</strong> Society<br />
of Alberta (HBOC Society of Alberta) hosted its<br />
eighth annual conference on November 7, 2009.<br />
While the majority of breast<br />
and ovarian cancers occur by<br />
chance, about 5-10% of the<br />
cases are hereditary. Many hereditary<br />
breast and ovarian cancers are<br />
associated with mutations on two<br />
genes, known as BRCA1 or BRCA2. If<br />
an individual has a mutation in either<br />
gene, each of his or her children<br />
has a 50% chance of inheriting the<br />
mutation. Genetic tests are available<br />
for mutations in these genes. The<br />
HBOC Society of Alberta believes that<br />
individuals and families impacted by<br />
hereditary breast and ovarian cancers<br />
should have timely access to quality<br />
health information and services.<br />
HBOC Society of Alberta’s goal is to<br />
advance the education of the public<br />
concerning hereditary breast and<br />
ovarian cancers and provide support to<br />
those individuals and families affected<br />
by offering information, advice and<br />
peer support.<br />
Here are the highlights of the<br />
conference presentations by experts,<br />
breast cancer survivors and others.<br />
Introduction:<br />
Lianne Hanson – Survivor and<br />
HBOC Society of Alberta Member<br />
Personal Reflection<br />
• A moving video was shared about<br />
Lianne’s long emotional struggle<br />
through breast cancer, genetic<br />
testing and subsequent surgeries as<br />
a young mother<br />
• Lianne has shared her journey<br />
with the public through a series of<br />
articles in the Edmonton Journal<br />
Keynote Speaker:<br />
Dr. Mary Jane Esplen, PhD, RN<br />
Living with High Risk for <strong>Cancer</strong> –<br />
Key Issues and How to Deal with Them<br />
• Themes included risks and issues<br />
associated with hereditary breast<br />
and ovarian families, and the pros<br />
and cons of genetic testing<br />
• Dr. Esplen is a Clinician Scientist<br />
and Professor at the University<br />
of Toronto, specializing in<br />
Psychosocial Oncology<br />
Panel Discussion:<br />
HBOC Society Members<br />
Trends in Reconstructive <strong>Breast</strong> Surgery<br />
• Four women with different<br />
kinds of reconstructive surgeries<br />
participated<br />
• Questions were addressed about<br />
recovery time, pain, satisfaction<br />
with results, and effect of surgery<br />
on spouses and other family<br />
members<br />
High Risk Clinics in Alberta:<br />
Dr. Barbara Krause, MD, FRCPC &<br />
Kim Baikie, RN, Nurse Navigator<br />
Updates on the Edmonton and Calgary<br />
High Risk Clinics<br />
• Dr. Krause provided updates on<br />
the Edmonton High Risk Clinic,<br />
which is also run by Dr. Kelly<br />
Dabbs, MD. This clinic operates on<br />
a referral basis, supporting patients<br />
with information on options as well<br />
as MRI access at the Cross <strong>Cancer</strong><br />
Institute<br />
• Baikie updates on the Calgary<br />
High Risk Clinic, where she and<br />
oncologist Dr. Sasha Lupichuk<br />
and psychologist Dr. Tara Power<br />
work as a team to find the best<br />
personalized options for each high<br />
risk individual. This clinic also<br />
operates on a referral basis<br />
The conference also featured<br />
concurrent sessions on a variety of<br />
topics.<br />
Session: Jodi Wilkie, B.Sc. Pharm<br />
Hormone Use after Prophylactic<br />
Oopherectomy<br />
• Topics consisted of the benefits<br />
and risks of Hormone Replacement<br />
Therapy (HRT) after prophylactic<br />
oophorectomy, how long HRT<br />
should be used and alternative<br />
therapies<br />
• Wilkie is a pharmacist and<br />
menopause practitioner<br />
Session: Lois Bailey, Pilates Instructor<br />
Post Surgical Pilates<br />
• Principles of Pilates were explained,<br />
including the history and beliefs of<br />
the discipline and how mental and<br />
physical health are interrelated<br />
• Bailey is an internationally-trained<br />
instructor with a focus on post<br />
surgical Pilates<br />
Continued on Page 21 <br />
18 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
Informing Women of the Risks and Benefits<br />
of Genetic Testing for Hereditary <strong>Breast</strong> and<br />
Ovarian <strong>Cancer</strong><br />
Interview with Susan Armel, MS, CGC Genetic Counsellor;<br />
Rochelle Demsky, MS, CGC Genetic Counsellor; Fran Turner<br />
Submitted by Ovarian <strong>Cancer</strong> Canada<br />
Genetic counsellors Susan Armel<br />
and Rochelle Demsky worry<br />
most about the patients they<br />
don’t get to see.<br />
They spend<br />
their days at<br />
the Familial<br />
<strong>Breast</strong> and<br />
Ovarian<br />
<strong>Cancer</strong> Clinic<br />
of Toronto’s<br />
Princess<br />
Margaret<br />
Hospital<br />
focused on a<br />
steady stream<br />
of patients who<br />
come to them<br />
for information<br />
and guidance<br />
about genetic<br />
testing related<br />
to inherited<br />
forms of<br />
breast and<br />
ovarian cancer.<br />
But they are<br />
concerned about the many patients at<br />
increased risk for inherited disease who<br />
are missing the opportunity to learn<br />
about genetic testing.<br />
Some patients shy away from genetic<br />
counselling because they believe that<br />
it means they must agree to genetic<br />
testing.“ That’s a big misconception,”<br />
says Armel. “People need to know<br />
that there is value in having the<br />
information and then using it to make<br />
an informed decision about testing.”<br />
Approximately 10% of ovarian<br />
cancers and 5% of breast cancers<br />
are hereditary, meaning that a<br />
predisposition to developing breast,<br />
Fran Turner, National Program Director, Ovarian<br />
<strong>Cancer</strong> Canada<br />
ovarian and other related cancers is<br />
being passed through the generations<br />
of the family. Most hereditary breast<br />
and ovarian cancers are due to<br />
mutations or<br />
changes in<br />
the BRCA1 or<br />
BRCA2 genes.<br />
These gene<br />
mutations can<br />
also increase<br />
prostate cancer<br />
among men.<br />
Both females<br />
and males have<br />
the BRCA1 and<br />
BRCA2 genes<br />
and a mutation<br />
can be inherited<br />
from a person’s<br />
mother or father.<br />
Some people<br />
who are eligible<br />
for genetic<br />
counselling<br />
miss the<br />
opportunity to<br />
consider testing because they are<br />
not being referred. “You have to be<br />
your own advocate and speak with<br />
your physician,” adds Demsky.<br />
“Anyone who is eligible for genetic<br />
testing should be referred for genetic<br />
counselling.”<br />
Most eligibility criteria for counselling<br />
and testing – whether for people already<br />
diagnosed with ovarian or breast<br />
cancer or for those without a personal<br />
diagnosis – involves having a family<br />
history of one or both of the diseases.<br />
Although the specific criteria may differ<br />
across the provinces and territories,<br />
genetic counselling and testing for<br />
gene mutations that increase the risk of<br />
inherited ovarian and breast cancer are<br />
available throughout the country.<br />
For example, Demsky states that women<br />
with invasive serous ovarian cancer<br />
or a diagnosis of breast cancer under<br />
age 35 are eligible for governmentfunded<br />
testing in Ontario and should<br />
be referred for genetic counselling. “In<br />
these cases, they don’t need to have a<br />
family history of the disease aside from<br />
their own personal diagnosis.”<br />
Fran Turner, National Director of<br />
Programs for Ovarian <strong>Cancer</strong> Canada,<br />
provides information and support<br />
to women diagnosed with ovarian<br />
cancer. She encourages those who have<br />
a family history of ovarian, breast or<br />
related cancers to find out if they are<br />
eligible for genetic counselling and<br />
testing. “If you have a family history,<br />
you should bring this to the attention<br />
of your doctor. Genetic counselling<br />
is an important next step to help you<br />
understand the risks and benefits<br />
of genetic testing. Testing involves<br />
dealing with complex information,<br />
emotions and family relationships, so<br />
having the guidance and expertise of a<br />
genetic counsellor is critical.”<br />
According to Demsky, “The important<br />
thing is for the patient to really<br />
understand what genetic testing is all<br />
about – that it’s not just a blood test<br />
but it has implications for the person<br />
and their family in terms of their own<br />
risks of getting cancer and the options<br />
available to them.”<br />
• Women who test positive for the<br />
BRCA1 mutation have a 50-85%<br />
lifetime chance of getting breast<br />
cancer and a 20-40% lifetime risk of<br />
ovarian cancer<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 19
• Women who test positive for<br />
the BRCA2 mutation also have a<br />
50-85% lifetime chance of getting<br />
breast cancer and a 10-20% lifetime<br />
risk of ovarian cancer<br />
• Those with the BRCA1 or BRCA2<br />
mutation have a 50% chance of<br />
passing the mutation on to each of<br />
their children<br />
• Both men and women<br />
can have a BRCA1 or<br />
BRCA2 mutation, and<br />
these mutations can be<br />
inherited from one’s<br />
mother or father<br />
• BRCA1 and BRCA2<br />
mutations also<br />
increase prostate<br />
cancer risks among<br />
men, and in particular<br />
mutations in the<br />
BRCA2 gene also<br />
increase the risks for<br />
pancreatic cancer,<br />
melanoma, and male<br />
breast cancer<br />
• BRCA mutations occur<br />
in individuals of all<br />
ethnic backgrounds,<br />
but are more common<br />
in certain populations. About 1 in<br />
50 Ashkenazi Jews has a BRCA1<br />
or BRCA2 mutation that increases<br />
the risks for breast, ovarian and<br />
related cancers. French <strong>Canadian</strong>s<br />
of certain ancestry may be at<br />
increased risk. There are common<br />
BRCA mutations in the Icelandic<br />
and Dutch populations<br />
• Although they are at increased risk,<br />
not all people with BRCA1 or BRCA2<br />
mutations will develop cancer<br />
According to the genetic counsellors,<br />
people are often unaware that women<br />
with inherited ovarian cancer are at<br />
increased risk for breast cancer while<br />
those with inherited breast cancer are<br />
at higher risk for ovarian cancer.<br />
While the statistics can be daunting,<br />
Armel believes that genetic counsellors<br />
can be of great assistance as “tour guides<br />
that lead people down a path and help<br />
them decide what is right for them.”<br />
There is an education component, which<br />
involves helping the patient understand<br />
genetic testing and reaching a decision<br />
about whether or not to be tested.<br />
Genetic counselling can also encompass<br />
trying to sort out inconclusive test<br />
results, or helping a person come to<br />
terms with a positive result and then<br />
developing a plan of action.<br />
What can a woman do if she tests<br />
positive for a BRCA mutation and is at<br />
increased risk of developing cancer?<br />
Susan Armel (Left) and Rochelle Demsky (Right)<br />
For ovarian cancer: Regular<br />
monitoring (pelvic or transvaginal<br />
ultrasound and a CA125 blood test);<br />
oral contraceptives (birth control pill);<br />
prophylactic oophorectomy (surgical<br />
removal of ovaries and fallopian<br />
tubes); and hysterectomy (removal of<br />
the uterus).<br />
For breast cancer: Screening (breast<br />
self-exams, clinical breast exams,<br />
mammograms and MRIs); medications<br />
such as Tamoxifen; prophylactic<br />
oophorectomy (surgical removal<br />
of ovaries and fallopian tubes); or<br />
prophylactic mastectomy (surgical<br />
removal of the breasts).<br />
Genetic counselling and testing are<br />
concentrated in major <strong>Canadian</strong> centres.<br />
Some provinces and territories access<br />
these services through other provinces.<br />
Patients from smaller communities<br />
and rural or remote regions may avoid<br />
significant travel by accessing genetic<br />
counsellors via Telehealth Ontario. If a<br />
person decides to proceed with testing<br />
after counselling, a blood sample can be<br />
taken by local health professionals and<br />
sent in for analysis.<br />
Some of the newer trends in genetic<br />
counselling involve group sessions for<br />
the teaching component, followed by<br />
individual sessions with each patient.<br />
Depending on the patient’s wishes,<br />
some centres will provide test results<br />
by phone, followed by<br />
an in-person meeting<br />
with their counsellor to<br />
explore options.<br />
Armel and Demsky<br />
can envision the day<br />
when genetic testing<br />
is routinely used to<br />
help determine a<br />
course of treatment for<br />
those diagnosed with<br />
hereditary breast or<br />
ovarian cancer.<br />
In the meantime,<br />
while acknowledging<br />
the challenges of the<br />
job, they say genetic<br />
counselling offers<br />
many rewards. Says<br />
Armel: “Although testing isn’t right for<br />
everybody, we feel that we are helping<br />
prevent cancer and I think our patients<br />
see it that way too.”<br />
For more information, please visit:<br />
Hereditary <strong>Breast</strong> and Ovarian<br />
<strong>Cancer</strong> Foundation<br />
www.hboc.ca<br />
Hereditary <strong>Breast</strong> and Ovarian<br />
<strong>Cancer</strong> Society<br />
www.hbocsociety.org<br />
FORCE: Facing Our Risk of <strong>Cancer</strong><br />
Empowered<br />
www.facingourrisk.org<br />
Willow <strong>Breast</strong> <strong>Cancer</strong> Support<br />
Canada<br />
Visit www.willow.org or call<br />
1-888-778-3100<br />
To find a genetic counsellor, contact<br />
your family physician as a first point<br />
of reference; also refer to the <strong>Canadian</strong><br />
Association of Genetic Counsellors at<br />
www.cagc-accg.ca . •<br />
20 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
Susan Armel is the senior genetic<br />
counsellor at the Familial <strong>Breast</strong> and<br />
Ovarian <strong>Cancer</strong> Clinic at Princess<br />
Margaret Hospital. Since 1999, she<br />
has specialized in providing genetic<br />
counselling services to families with<br />
strong histories of breast and ovarian<br />
cancer. Armel is also a Lecturer in the<br />
MSc. Genetic Counselling Program at the<br />
University of Toronto and is involved in<br />
research in the area of hereditary breast<br />
and ovarian cancer.<br />
Rochelle Demsky is a genetic counsellor at<br />
the Familial <strong>Breast</strong> and Ovarian <strong>Cancer</strong><br />
Clinic at Princess Margaret Hospital.<br />
She has been working in cancer genetics<br />
since 1999, both in New York City and in<br />
Toronto. Demsky is a clinical instructor<br />
in the MSc Genetic Counselling Program<br />
at the University of Toronto and is<br />
also involved in research in the area of<br />
hereditary breast and ovarian cancer.<br />
Fran Turner, National Program<br />
Director for Ovarian <strong>Cancer</strong> Canada, is<br />
responsible for the ongoing development<br />
and implementation of programs to meet<br />
the needs and expectations of a broad<br />
range of stakeholder groups nationwide.<br />
She demonstrates a deep understanding<br />
of community needs and enjoys creating<br />
innovative ways to continue to spread<br />
awareness about ovarian cancer.<br />
About Ovarian <strong>Cancer</strong> Canada<br />
Ovarian <strong>Cancer</strong> Canada is the country’s only national charity dedicated to<br />
overcoming ovarian cancer. Ovarian <strong>Cancer</strong> Canada focuses its efforts on<br />
funding research in early detection, improved treatments and, ultimately,<br />
a cure for the disease. The organization invests in education, awareness and<br />
support programs for women living with the ovarian cancer and their families.<br />
Ovarian cancer is Canada’s most fatal gynecologic cancer. It will strike<br />
approximately 1 in 70 women in their lifetimes. There is no reliable early<br />
detection test, nor are the disease’s symptoms easy to recognize. As a result, most<br />
women are diagnosed in the later stages when five-year survival rates can be as<br />
low as 20%. When diagnosed and treated early, up to 90% of women diagnosed<br />
with ovarian cancer survive.<br />
It is important to be familiar with the symptoms of the disease. If you have one or<br />
more of these symptoms that persist for 3 weeks or longer, see your health care<br />
practitioner. The most common symptoms are as follows:<br />
• Swelling or bloating of the abdomen<br />
• Pelvic discomfort or heaviness<br />
• Back or abdominal pain<br />
• Fatigue<br />
Upcoming Events<br />
• Gas, nausea, indigestion<br />
• Change in bowel habits<br />
• Emptying your bladder frequently<br />
• Menstrual irregularities<br />
• Weight loss or weight gain<br />
Continued from Page 18<br />
Hereditary <strong>Breast</strong> & Ovarian <strong>Cancer</strong><br />
Society of Alberta 8th Annual Fall 2009<br />
Conference<br />
Session:<br />
Dr. Michelle Philips MS,<br />
Rac., DTCM<br />
Complementary Medicines<br />
• Dr. Philips provided<br />
information on Traditional<br />
Chinese Medicine (TCM)<br />
related to oncology and quality<br />
of life management<br />
• Dr. Phillips has worked for<br />
many years as a genetic<br />
counsellor with people at risk<br />
for and affected by hereditary<br />
cancer. Her focus continues to<br />
be cancer-related, including<br />
the use of TCM to complement<br />
traditional western treatments<br />
Conclusion: Wendy Edey,<br />
Hope Foundation of Alberta<br />
Message of Hope<br />
• A down-to-earth message of<br />
hope in the light of hereditary<br />
breast and ovarian cancers<br />
closed the conference<br />
• Edey is Director of Counselling<br />
at Hope Foundation of Alberta<br />
Planning is underway for the 9 th<br />
Annual Conference to be held on<br />
November 7 th , <strong>2010</strong> in Edmonton. •<br />
For more information, please call<br />
1-866-786-HBOC(4262), e-mail<br />
hbocsociety@telus.net or visit<br />
http://www.hbocsociety.org/.<br />
• Ovarian <strong>Cancer</strong> Canada is proud to be partnering with the Bay’s designer destination, The Room for the Celebrate Women<br />
event on March 23, <strong>2010</strong>. The event will feature a champagne reception, luncheon and fashion show hosted by Fashion<br />
Television’s Jeanne Beker. All proceeds raised from the event will go towards funding Ovarian <strong>Cancer</strong> Canada’s support,<br />
awareness and research programs. For more information or to purchase tickets please visit the Ovarian <strong>Cancer</strong> Canada<br />
website at www.ovariancanada.org .<br />
• To learn about upcoming regional and national events visit the <strong>News</strong> and Events section of our website.<br />
• On Sunday, September 12, <strong>2010</strong>, join <strong>Canadian</strong>s in cities and towns across the country for the Winners Walk of Hope in<br />
support of Ovarian <strong>Cancer</strong> Canada. For details, visit www.winnerswalkofhope.ca . •<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 21
A Rose Grows: Fighting<br />
<strong>Cancer</strong>, Finding Me<br />
The inspirational story of Olga Stefaniuk, a<br />
cancer survivor of 23 years<br />
First diagnosed<br />
with breast<br />
cancer<br />
in 1986 at the<br />
age of 42, Olga,<br />
from Saskatoon,<br />
Saskatchewan,<br />
decided to use her<br />
life for a greater<br />
purpose. She<br />
attended retreats<br />
and workshops,<br />
learning all she could<br />
about the disease<br />
and how to cope.<br />
She then brought<br />
that information back<br />
to Saskatchewan,<br />
initiating retreats,<br />
workshops and<br />
support groups for<br />
others facing cancer. 23 years and two recurrences later, Olga<br />
continues to spread a message of hope to patients, caregivers<br />
and the medical community.<br />
A Rose Grows:<br />
Fighting <strong>Cancer</strong>,<br />
Finding Me is Olga’s<br />
first book. It details<br />
the true story of her<br />
more than 23-year<br />
battle with cancer<br />
and the message she<br />
spreads about facing<br />
life’s challenges: with<br />
hope, anything is<br />
possible. This 215- Ogla Stefaniuk<br />
page autobiography<br />
heralds Olga’s resilience and positivity and at the same<br />
time reminding us all what power we hold within.<br />
For $16.95, A Rose Grows: Fighting <strong>Cancer</strong>, Finding Me is<br />
available in Saskatoon at:<br />
• McNally Robinson Booksellers (Saskatoon<br />
branch)<br />
• HOPE <strong>Cancer</strong> Help Centre Inc.<br />
• Pink Tree, The Fitting Shop<br />
• The Saskatoon <strong>Cancer</strong> Centre<br />
• Niki’s Jewelry Design (www.<br />
nikisjewelrydesign.com)<br />
Also available directly from the author by calling<br />
(306) 374-1146.<br />
Obituary<br />
Marg Campbell<br />
The <strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> mourns the<br />
loss of Marg Campbell, who died surrounded<br />
by family and friends on January 8, <strong>2010</strong>. Marg<br />
was a kind, gentle woman who lived with breast<br />
cancer for 14 years. Marg is survived by her husband<br />
Arch, her children Peter, Sara and Paul, her two<br />
grandchildren and many other relatives and friends.<br />
After a long career at the Library of Parliament, Marg<br />
was able to devote herself to her love of learning and<br />
literature, travel, family and friends.<br />
Marg became a volunteer at CBCN’s national office after she was diagnosed<br />
with metastatic breast cancer. She helped with reception several afternoons<br />
a week, talking on the phone with other women who had breast cancer, and<br />
once she became too ill to come to the office, she helped update our website<br />
from home. She was an intelligent, kind and gentle woman, and we will miss<br />
her presence in our lives.<br />
22 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
BRCA1/2 Testing:<br />
Navigating Through the Various<br />
Reactions: All Parts of the Process<br />
By Mary Jane Esplen, PhD, RN<br />
The cloning of cancer genes<br />
and the offering of genetic<br />
testing offers a clearer sense of<br />
understanding why cancer developed<br />
for some, while for others it helps to<br />
gain certainty around an increased<br />
risk that can move a person forward<br />
in considering the various risk<br />
management options. Genetic testing<br />
can provide a sense of hope that<br />
a person may be able to prevent a<br />
specific cancer from occurring, or at<br />
the very least allow for early detection.<br />
At the same time, regardless of how<br />
open or how clear the individual is<br />
around the reasons for wanting to be<br />
tested, the time of receiving the news<br />
of the test result is a turning point of<br />
sorts, as genetic knowledge is, in a<br />
sense, life-altering information. In fact,<br />
it is not uncommon for individuals<br />
to describe life before and/or after a<br />
genetic test result.<br />
…not uncommon to<br />
underestimate extent of<br />
emotional reactions...<br />
Prior to undergoing genetic testing,<br />
individuals often have a sense that<br />
they will likely have reactions and<br />
may even anticipate exactly how they<br />
will feel in response to a test result.<br />
Some individuals feel that they are<br />
likely to test positive, indicating that<br />
they carry a mutation, while others<br />
may expect that they likely do not<br />
carry a mutation. Typically, such<br />
expectations are based on the family<br />
history experience (e.g. multiple<br />
cancer diagnoses in a family or losses,<br />
or shared characteristics of a family<br />
member who had the disease (e.g.<br />
“I look like my mother so I think I<br />
probably carry the mutation”).<br />
Even when a person anticipates<br />
a particular response, it is not<br />
uncommon to underestimate the<br />
extent of emotional reactions that may<br />
arise, and while an individual could<br />
feel prepared for the test result, he/<br />
she has no real way of knowing the<br />
level of reactions – the roller coaster<br />
emotions that can result after receiving<br />
news of the test result or the difficult<br />
choices regarding whether or not to<br />
simply go for screening or to undergo<br />
prophylactic surgery.<br />
It is important for individuals to<br />
realize that these reactions are a<br />
normal part of the process. The<br />
testing experience itself causes several<br />
stressors, including evoked memories<br />
of the cancer experiences of loved<br />
ones; care-giving experiences for some,<br />
and the painful memory of losses of<br />
family members for others. It is also<br />
normal to experience feelings of fear<br />
and vulnerability, such as a loss of<br />
confidence around one’s current and<br />
future health. Some women describe<br />
feeling like “damaged goods” or<br />
articulate how they always felt they<br />
would develop cancer and that it was<br />
just a question of when.<br />
Some individuals have endured<br />
multiple losses and describe the test<br />
result itself as a kind of loss. For<br />
example, one woman who received<br />
the news that she carries a BRCA1<br />
gene mutation stated that, “I have lost<br />
many in my family to cancer and now<br />
with this news…I feel like I have had<br />
another hit and lost something again.”<br />
Understandably, a sense or memory<br />
of a felt loss causes feelings of grief,<br />
sadness or even anger, and the<br />
power of such emotional reactions<br />
Dr. Mary Jane Esplen<br />
can be surprisingly strong, despite<br />
that the losses may very well have<br />
been experienced several years ago.<br />
For those who have lost a mother or<br />
father at a young age, for example,<br />
the feelings can be very powerful.<br />
Sometimes the person experiences<br />
a strong identification with the lost<br />
parent, such as a very deep sense of<br />
feeling similar, so much so that life<br />
may seem to even be repeating itself:<br />
(e.g. “...my mother got ill with cancer<br />
at 39...and I don’t think I will be 40<br />
either...she died of cancer...maybe the<br />
same will occur to me”). This powerful<br />
force often creates a strong sense of<br />
fear, so much so that a person can feel<br />
pressure to achieve personal goals<br />
prior to a time when one believes the<br />
disease may emerge. Alternatively, it<br />
can result in having concerns about<br />
developing cancer which play out in<br />
patterns, such as having a strong urge<br />
to eat healthy, exercise or to use other<br />
strategies to minimize the cancer risk.<br />
If this is done in an unbalanced way,<br />
it can begin to impact on a person’s<br />
quality of life.<br />
balance important …<br />
Whether it is feelings of fear or a<br />
sense of anger or loss, it is helpful to<br />
recognize these feelings and allow<br />
them to occur rather than put them<br />
away or pretend that they do not exist,<br />
as they are valid and it is helpful to<br />
experience and process them rather<br />
than have them impacting in more<br />
unconscious ways.<br />
The possession of genetic knowledge has<br />
implications for other family members.<br />
Health professionals often encourage<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 23
people to give this information to<br />
other family members who may be at<br />
risk for cancer and who may benefit<br />
from genetic testing. Having genetic<br />
information can pose challenges for<br />
many people who may not be close to<br />
relatives or those who have relatives<br />
living a great geographical distance<br />
away. How does one begin to inform<br />
these individuals? Should it be a<br />
telephone call or a letter? How does one<br />
breach the topic of cancer? Individuals<br />
may fear that they will cause the<br />
relative to become emotional or have<br />
challenges in even describing and giving<br />
out complex genetic terms or their<br />
associated implications.<br />
Other challenges include the<br />
implications for the relevance of the<br />
genetic information for a person’s<br />
children. Most parents will want to<br />
inform their children that they are<br />
eligible for genetic testing at some<br />
stage; however, important questions<br />
need to be considered: How do I tell<br />
my daughter or son? At what age<br />
should I inform them? How will they<br />
react? How much should I tell them?<br />
Should I wait until they are at the age<br />
of screening? Understandable concerns<br />
include the potential reactions of a<br />
child and whether or not he or she<br />
will be able to handle the news. Other<br />
common concerns include the feeling<br />
that one is holding on to information<br />
until feeling prepared to disclose it,<br />
which can result in a person feeling<br />
less open or even feeling a sense that<br />
he or she has secret knowledge.<br />
Options information<br />
follow test results<br />
Following the news of the test<br />
result, individuals are typically<br />
given information on a number of<br />
options to consider in managing his<br />
or her risk, including the need for<br />
multiple screening tests to monitor<br />
health (mammograms, ultrasounds,<br />
MRIs), and the option of prophylactic<br />
surgeries (prophylactic mastectomies<br />
or prophylactic oopherectomy). These<br />
are very personal decisions, and even<br />
within families it is not uncommon for<br />
siblings to choose different options.<br />
For some women, the recommendation<br />
of being followed through high risk<br />
screening programs is sufficient<br />
and they can manage the associated<br />
anxiety that occurs when going for<br />
checkups. Other women feel that<br />
prophylactic surgery is the best choice<br />
for them in managing their cancer risk.<br />
The decision-making around these<br />
preventive and monitoring options<br />
can be challenging and leave a woman<br />
feeling unclear and uncertain as to<br />
which choice is best for her.<br />
While all women clearly want to<br />
lower their cancer risk, there is a<br />
fundamental difference between<br />
making a choice to have surgery<br />
when in good health and having<br />
surgery once disease is detected. When<br />
making these challenging decisions,<br />
it is important for women to have<br />
opportunities to explore their personal<br />
pros and cons, value systems and to<br />
gain a clearer understanding about<br />
which options seem best suited for<br />
them. There can be significant value<br />
in working through these decisions<br />
with a healthcare professional such<br />
as a mental health professional, a<br />
nurse, or with her genetic counsellor.<br />
Women adjust more optimally to their<br />
decisions when they feel as though<br />
they were fully informed, had taken<br />
the time to consider their options, had<br />
opportunities to explore their views,<br />
understood the implications and<br />
potential results and side effects, and<br />
felt ready to make them.<br />
Regardless of how well-informed<br />
a woman feels, it is important to<br />
recognize that along with the challenges<br />
around medical decisions, there will<br />
be emotional and physical implications<br />
that require time and an adjustment<br />
period. Again, these reactions are<br />
important to recognize as a normal part<br />
of the process. Surgeries which alter<br />
functioning and physical appearance or<br />
sensation will result in changes to body<br />
image and feelings about oneself, and<br />
can affect self-esteem and require some<br />
time to adjust to.<br />
Common emotional reactions include<br />
feelings of anxiety prior to having<br />
surgery, feelings of sadness, loss and<br />
a need to mourn the loss of the prior<br />
physical self. It takes time for the<br />
woman to become familiar with her<br />
new sense of self. Women who feel<br />
that they are overwhelmed with these<br />
emotional reactions or believe that<br />
the adjustment period may be taking<br />
too long should consider seeking<br />
professional help from a counsellor,<br />
meeting with other women in similar<br />
situations through peer support or<br />
support groups, or look for relaxation<br />
and meditation techniques to manage<br />
stress levels and emotional reactions.<br />
The changes that occur as a result of<br />
surgeries can also have implications<br />
for intimate relationships. Sometimes<br />
it is difficult for partners to understand<br />
how to assist a woman in her<br />
adjustment, or couples may find it<br />
challenging to openly discuss their<br />
perspectives and fears surrounding<br />
the changes or their own personal<br />
reactions. For example, women can<br />
feel like they have lost their sense of<br />
femininity or that they have lost the<br />
ability to perform a certain role (e.g.<br />
reproductive roles). They may feel<br />
“different” or even older. Some find<br />
themselves with a lower libido if they<br />
have entered into menopause. Most<br />
women work successfully through<br />
these feelings alone or with their own<br />
supports, but health professionals or<br />
counsellors can be helpful in assisting<br />
women or couples to navigate these<br />
emotional challenges. Following their<br />
adjustment periods, most women<br />
feel satisfied that they made the right<br />
decision and benefit through the<br />
comfort provided by having a lower<br />
risk for cancer as a result of the choice<br />
they made.<br />
Other challenges around surgery<br />
involve discussions with children<br />
to inform them that their mother is<br />
24 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
having surgery but is not currently ill.<br />
It is important to let children know<br />
that she will be okay when she returns<br />
from the hospital. The post-surgical<br />
recovery period requires discussions<br />
and changes in roles and routines at<br />
home and in some cases women will<br />
not be able to carry or hold young<br />
children or perform many physical<br />
tasks. These changes require some<br />
explanation to the child in an ageappropriate<br />
manner while minimizing<br />
the potential for the child to become<br />
fearful. The use of toys, dolls, and<br />
open discussions and preparation<br />
before surgery can assist the child<br />
to adjust to the changes that occur<br />
following surgery and to provide some<br />
understanding around the situation<br />
while minimizing alarm.<br />
These are just a few of the most<br />
common reactions and issues that are a<br />
part of the genetic testing process and<br />
its implications. Adjustment is just a<br />
normal part of the process. Reactions<br />
can vary but most individuals do<br />
adjust over time and they are able<br />
to work through these challenges on<br />
their own or with friends and family<br />
support. Approximately 10-20% of<br />
individuals require more emotional<br />
support and assistance in working<br />
through adjustment issues and<br />
coping with the associated stressors,<br />
like having surgery, or the reactions<br />
that can occur around a genetic test<br />
result. Individuals may benefit from<br />
talking openly with their healthcare<br />
professionals or with their own<br />
families and peer supports as they<br />
learn to cope with their test results and<br />
during the periods when they must<br />
weigh personal options.<br />
Strategies that can help individuals<br />
to gain clarity and cope with and<br />
work through these challenges are<br />
also useful and can be found through<br />
Internet searchers or through genetic<br />
testing centres and cancer clinics.<br />
Observing the challenges that occur as<br />
a result of genetic testing as stressful<br />
and requiring an adjustment period<br />
allows the individual to regard these<br />
reactions as a normal part of the<br />
process. Hopefully, such a context will<br />
help individuals to ask for help more<br />
often, seek out strategies and minimize<br />
the opportunity for more distress that<br />
can affect one’s quality of life.<br />
Services and supportive tools that<br />
can be helpful:<br />
• Websites<br />
• Chat lines; links to meet others in<br />
similar situations<br />
• Support groups, especially<br />
those that address relevant<br />
areas of concern, either peer or<br />
professionally-led<br />
• Decisional aids or tools to assist<br />
with medical decision-making (ask<br />
your genetic counsellor or support<br />
team at your local cancer centre or<br />
hospital)<br />
• One-on-one counselling with a<br />
nurse, mental health professional,<br />
genetic counsellor, or family doctor<br />
• Meditation techniques<br />
• Stress management strategies (yoga,<br />
exercise, guided imagery)<br />
• Reading materials (Internet based,<br />
CD ROMs, books, self-help books,<br />
pamphlets)<br />
You should consider seeking<br />
professional assistance when<br />
you have:<br />
• Difficulty sleeping<br />
• Strong emotional reactions<br />
(e.g. grief, sadness, anxiety,<br />
crying episodes that last more<br />
than a couple of weeks, feeling<br />
overwhelmed)<br />
• Anger outbursts<br />
• Difficulty concentrating<br />
• Difficulty carrying out roles at<br />
home or work<br />
• Extreme feelings of “being alone”<br />
• Withdrawal from hobbies, work,<br />
friendships<br />
• Lack of clarity around a decision,<br />
ambivalence in considering options,<br />
unable to make a decision<br />
• Uncertainty about how to discuss<br />
genetic information with offspring<br />
or other family members<br />
• Challenges when communicating to<br />
family members<br />
• Difficulties accepting changes in<br />
body image or dealing with the<br />
impact of surgery •<br />
Dr. Mary Jane Esplen is a Clinician-<br />
Scientist at the University Health<br />
<strong>Network</strong>, a Professor at the Department<br />
of Psychiatry, Faculty of Medicine,<br />
University of Toronto, and is the<br />
Inaugural Director of the de Souza<br />
Institute. She is also a <strong>Canadian</strong> Institute<br />
of Health Research scientist studying the<br />
psychosocial impact of genetic testing<br />
as well as having cancer. Dr. Esplen<br />
received a Ph.D. in psychosomatic<br />
medicine from the Institute of Medical<br />
Sciences, University of Toronto, and<br />
completed a post-doctorate fellowship in<br />
cancer genetics at the Samuel Lunenfeld<br />
Research Institute in Toronto. She is<br />
a therapist and researcher working in<br />
psychosocial oncology and teaches at the<br />
University of Toronto. She has a strong<br />
interest in developing measurement tools<br />
and interventions for cancer genetic<br />
populations and individuals with cancer.<br />
Dr. Esplen is the recent past president of<br />
the <strong>Canadian</strong> Association of Psychosocial<br />
Oncology.<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 25
Scarred, Single<br />
and Sexy<br />
By Lynda McHenry<br />
It has been almost five years since<br />
my bilateral mastectomy. I was<br />
diagnosed with DCIS (Ductal<br />
carcinoma in situ) right before my<br />
39th birthday. My older sister,<br />
Maureen, was diagnosed at age 41<br />
with an aggressive, invasive breast<br />
cancer. If it wasn’t for her, I would<br />
never have known to look for it.<br />
I would be well on my way to an<br />
early grave. My Aunt Pauline had<br />
passed away at age 47 of bilateral<br />
ovarian cancer, leaving her adopted<br />
daughters when they were just 10 and<br />
13. My dad, Fred, was diagnosed with<br />
prostate cancer at age 64. My illness<br />
suddenly confirmed a family history.<br />
My best option, according to my<br />
dad’s research, was to remove all<br />
breast tissue to reduce the risk<br />
of a recurrence. Thankfully, as<br />
my pathology report showed a<br />
precancerous condition in the other<br />
breast, I had a surgeon who supported<br />
my decision. I originally was hoping<br />
for a TRAM flap procedure (a<br />
tummy tuck and<br />
reconstruction all<br />
in one operation).<br />
However, I was not a<br />
“good” candidate for<br />
that type of surgery.<br />
I apparently wasn’t<br />
“fat” enough and the<br />
end result could leave<br />
me with stomach<br />
bulging issues. I was<br />
thinking, I have that<br />
problem now, but<br />
at least I can do sit<br />
ups if I want to fix it!<br />
The Latissimus Dorsi<br />
flap reconstruction<br />
was also not a good Lynda in a dress!<br />
option as I need those<br />
muscles for my job. I’m a lifeguard. I<br />
need to be able to swim WELL. So that<br />
left implants (Baywatch here I come!).<br />
I was told that even with<br />
the largest implants that<br />
they made, the surgeon<br />
would have trouble<br />
making them look right<br />
due to the broad span of<br />
my chest wall. I wasn’t<br />
keen on going that route<br />
anyway.<br />
My final conclusion was<br />
to “leave well enough<br />
alone.” I was symmetrical<br />
and avoiding another<br />
surgery sounded good<br />
to me. It would give me<br />
incentive to go to the<br />
gym to make my stomach<br />
as flat as my chest and it would be a<br />
constant reminder of just how precious<br />
every day is. My youngest daughter<br />
was going through puberty, I was<br />
going through liberty. I am sure I’m<br />
saving a bundle on bras. Most woman<br />
I know who have had reconstruction<br />
surgery are married. I went through<br />
my illness and operations as a single<br />
parent with three daughters. Without<br />
a spouse, I didn’t have to include<br />
anyone else in the decision-making<br />
process. You could probably flip a coin<br />
as to which was easier. Fortunately, I<br />
had very supportive family members<br />
and friends. It was a blessing to have<br />
my e-mailing buddies. Sort of like<br />
journalling with<br />
feedback.<br />
This leads me<br />
to where I am<br />
today. I’m a<br />
single 41-yearold<br />
breastless<br />
wonder. I have<br />
never been<br />
dainty and<br />
feminine. I am<br />
not comfortable<br />
in dressy clothes.<br />
I wear a tank<br />
top and shorts at<br />
work and I love<br />
it! Most people<br />
I encounter<br />
at work are aware of my surgery.<br />
Wearing prostheses seemed like a<br />
“false front” since they would know<br />
Lynda at Peter Hemingway Fitness<br />
and Leisure Centre in Edmonton,<br />
Alberta<br />
“they” weren’t real.<br />
It doesn’t bother<br />
me to be flatchested<br />
in public.<br />
Occasionally<br />
someone will<br />
complain of their<br />
“AA’s” and I say<br />
“at least you have<br />
nipples! Some of<br />
them still think my<br />
scar tissue gives<br />
me more cleavage<br />
than they have! Go<br />
figure!<br />
My friend, Sue,<br />
who is also 40ish,<br />
single and breastless said, “So what<br />
do you say to someone who could<br />
be potentially in a relationship with<br />
you? ‘Hey, I’d like to be upfront<br />
about something’ or ‘I’d like to get<br />
something off my chest’ then pull out<br />
the prostheses and slap them down on<br />
the table.” We both know that half the<br />
men out there will not be interested<br />
once they find out we don’t have any.<br />
It is a good thing that we both know<br />
that they are not the ones we would<br />
want to be with anyway. It does make<br />
things a little more awkward, though.<br />
Losing a physical part of my femininity<br />
was strange. What else could make<br />
me feel like a woman? Having my<br />
ovaries removed and sending me<br />
through surgical menopause? Hot<br />
flashes. Yes, hot flashes make you<br />
feel like a woman. You bond with<br />
other women who know what those<br />
little power surges feel like. How odd<br />
that the absence of more womanly<br />
components could create new, very<br />
female experiences.<br />
Yet, does it really matter? What is<br />
more important is what makes me feel<br />
like I’m alive. Quality of life counts.<br />
My life expectancy may have been<br />
only 47. My sister passed away last<br />
year, a week before her 47 th birthday.<br />
She missed her son’s graduation from<br />
high school by a month. When I turn<br />
48, it will be a very large milestone<br />
and cause for celebration. I have done<br />
everything I can possibly do to reduce<br />
26 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
the risk of hereditary cancer. A risk I<br />
describe as similar to holding dryer<br />
lint to a match. Could the match be a<br />
simile for stress? We may never know<br />
how external contributing factors<br />
play a role for someone with a predisposition<br />
to cancer. It is important<br />
not to blame ourselves for something<br />
we were born into.<br />
I feel vibrant watching my girls grow<br />
up. Trying snowboarding for the first<br />
time, building a snow fort, teaching<br />
them to drive a car, introducing them<br />
to great oldie TV shows like “Quantum<br />
Leap” and “M*A*S*H”. Laughing out<br />
loud. The hugs that never seem to<br />
end, the family photos, the extremes of<br />
teenage PMS to uncontrollable giggles.<br />
I feel empowered when I create things<br />
in pottery. I feel energized after a<br />
good workout at the gym. I feel<br />
fortunate when I catch a beautiful<br />
sunrise. I feel pure joy when I hear<br />
Kim Robertson play her harp and<br />
Israel Kamakawiwo’s version of<br />
“Somewhere over the Rainbow.”<br />
I feel radiant savouring good<br />
chocolate. I feel vivacious flirting<br />
with the young man at work who<br />
calls me “pretty lady” and blows<br />
me kisses. (Shhhh, don’t tell his<br />
girlfriend!)<br />
What could be better than all that?<br />
Our genetic results are inconclusive, but<br />
our geneticist says that we are diagnostic<br />
of a genetic mutation. There is no test for<br />
my beautiful daughters. They will have<br />
to rely on surveillance<br />
until something better<br />
comes along. I am<br />
grateful they have the<br />
power and knowledge<br />
to guide them through<br />
our family journey. My<br />
dad has cheated death<br />
and celebrated his 77 th<br />
birthday last August.<br />
He has sacrificed many<br />
joys to achieve this.<br />
There is hope that my<br />
daughters can do the<br />
same.<br />
Lynda and friend doing the “cleavage pose”<br />
When I grow up, I’m going to be a<br />
Grandma. Something my sister never<br />
got to be. I can hardly wait! •<br />
Lynda McHenry was born and raised in<br />
Calgary, Alberta, the youngest of four<br />
siblings, and has spent the past 16 years<br />
living in Edmonton. Her three daughters<br />
are first and foremost in her life. She has<br />
primarily worked in the field of aquatics<br />
and continues to work as a lifeguard for<br />
the City of Edmonton at the historical<br />
landmark, Peter Hemingway Fitness and<br />
Leisure Centre. She has been passionate<br />
about pottery for the past six years,<br />
becoming somewhat accomplished. She has<br />
completed five sprint triathlons in the past<br />
two years. It is through these endeavors<br />
she continues to enrich her life with joy<br />
and zeal.<br />
Lynda enjoying the mountains<br />
More Resources About BRCA<br />
<strong>Breast</strong><strong>Cancer</strong>.org:<br />
<strong>Breast</strong><strong>Cancer</strong>.org covers news about BRCA at<br />
http://www.breastcancer.org/risk/genetic/bcrisk_abnrml_genes.jsp?gclid=CJ-U4fn6qaACFUFM5QodMgNzbA<br />
Looking for BRCA Support? Find it Online on Facebook:<br />
BRCA1/BRCA2+ Canada is a networking group for <strong>Canadian</strong>s with BRCA1 and/or BRCA2 hereditary breast<br />
and ovarian cancer genes and their families. Members must request to join and the group has limited public<br />
content.<br />
Find this group at http://www.facebook.com/group.php?gid=38249555928&ref=ts or search for it on facebook<br />
by typing in “BRCA1/BRCA2+ Canada.”<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 27
The Psychobiological Risk and Resilience of Young<br />
Families Affected by Maternal <strong>Breast</strong> <strong>Cancer</strong><br />
By Melissa A. Vloet, PhD Candidate and Mario Cappelli, PhD, C. Psych.<br />
Among <strong>Canadian</strong> women,<br />
breast cancer continues to lead<br />
cancer incidence rates. In 2009<br />
alone, 22,700 women were diagnosed<br />
with breast cancer. <strong>Breast</strong> cancer<br />
affects women across the lifespan,<br />
and has been identified as the most<br />
commonly diagnosed cancer in women<br />
between the ages of 20 and 49. 1 This<br />
specific group of women faces many<br />
of the same trials as other women<br />
who are negotiating breast cancer<br />
diagnoses and treatment options;<br />
however, less is known about how<br />
this group of younger women copes<br />
with their illness. Research groups<br />
like ours, located at the Children’s<br />
Hospital of Eastern Ontario (CHEO),<br />
have taken a special interest in this<br />
younger population of breast cancer<br />
patients and survivors. Our research<br />
has traditionally been focused on<br />
identifying how women with breast<br />
cancer and young families juggle the<br />
competing factors in their lives. In<br />
addition, our investigations have also<br />
provided insight into how children and<br />
adolescents cope with their mothers’<br />
breast cancer diagnoses.<br />
The available literature on the<br />
occurrence of breast cancer in younger<br />
populations suggests that younger<br />
groups of women diagnosed with<br />
breast cancer differ from their older<br />
counterparts in a number of important<br />
ways. For instance, this younger cohort<br />
of women is more likely to be engaged<br />
in parenting activities. To date, the<br />
literature on cancer and parenting has<br />
identified several important factors<br />
that impact the family’s ability to cope<br />
with cancer. One of the most important<br />
determinants of family well-being<br />
appears to be family communication<br />
about breast cancer. Researchers<br />
studying parental cancer have found<br />
that many children and adolescents<br />
hold misperceptions about their<br />
parents’ cancer. These misperceptions<br />
are believed to develop from a lack of<br />
information and reassurance within<br />
the family and between health care<br />
providers and children. 2 3 Investigators<br />
have determined that communicating<br />
clear and consistent information (in a<br />
developmentally appropriate manner)<br />
promotes more effective coping in<br />
children and adolescents. For instance,<br />
children and adolescents who believed<br />
they were better informed about their<br />
parents’ cancer reported using more<br />
adaptive coping strategies to deal with<br />
some of the difficult emotions they<br />
experienced. 4<br />
One of the common myths about<br />
mothers with breast cancer is that<br />
their children experience higher<br />
rates of anxiety and depression than<br />
other kids. However, research has<br />
demonstrated that, in general, children<br />
and adolescents of mothers with<br />
breast cancer actually cope quite well.<br />
Certainly, this is good news for families<br />
adjusting to breast cancer. Despite this,<br />
there is still reason to be concerned<br />
about young families coping with breast<br />
cancer. Researchers have found that,<br />
although most children and adolescents<br />
cope well, female adolescents often<br />
experience significant struggles related<br />
to their mothers’ diagnoses. Compared<br />
to all other groups of children and<br />
adolescents studied, adolescent<br />
daughters report the highest levels of<br />
anxious and depressive symptoms when<br />
faced with parental breast cancer. 5, 4 In<br />
part, this distress is due to role shifts<br />
and added familial responsibilities<br />
that are commonly experienced by<br />
adolescent daughters.<br />
Adolescent daughters often report<br />
feeling torn between assisting their<br />
families and establishing independence<br />
(an important developmental task for<br />
all adolescents). They also experience<br />
Melissa A. Vloet<br />
concerns about how the shifts in<br />
their family roles will impact their<br />
mother-daughter relationships in the<br />
long term. 6 Many of the adolescent<br />
daughters studied also report concerns<br />
related to the disease of breast cancer<br />
itself. Personal risk for breast cancer<br />
seems to be one of their chief concerns.<br />
In some cases, this concern can develop<br />
into a maladaptive preoccupation with<br />
their own breast health.<br />
Evidence indicates that breast cancer<br />
diagnosed in women under 50 years of<br />
age is more commonly associated with<br />
genetic factors. To date, scientists have<br />
identified two specific gene alterations<br />
associated with an increased risk for<br />
breast cancer occurring in BRCA1<br />
and BRCA2. Researchers studying<br />
genetic testing for breast cancer have<br />
found that if a woman has alterations<br />
in BRCA1 and/or BRCA2, there is<br />
a 50% chance that her children will<br />
inherit the same alteration. Adolescent<br />
women who grow up in families<br />
where the risk for developing breast<br />
cancer is higher are often aware of the<br />
hereditary nature of breast cancer and<br />
may believe that they are more at risk<br />
for developing the illness themselves.<br />
Our research group is currently<br />
studying how adolescent girls feel<br />
about their mother’s breast cancer,<br />
familial breast cancer risk, their<br />
personal risk for breast cancer, and the<br />
communication that occurs within the<br />
family concerning breast cancer risk.<br />
28 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
At present, we are recruiting women<br />
who have been tested for alterations<br />
in BRCA1 and/or BRCA2 and their<br />
families to participate in our studies.<br />
In our previous research we have<br />
demonstrated that mothers’ concerns<br />
about an adolescent daughter’s breast<br />
cancer risk are particularly important<br />
in determining whether or not a<br />
mother will undergo genetic testing for<br />
the alterations in BRCA1 and BRCA2.<br />
Although the process of genetic<br />
testing has its own set of advantages<br />
and disadvantages for women, it also<br />
presents women with an important<br />
dilemma. Many women who undergo<br />
genetic testing feel confused about<br />
how to discuss their results with<br />
family members. This struggle can<br />
become even more difficult when there<br />
are children and adolescents involved.<br />
Our preliminary investigations<br />
of children’s attitudes concerning<br />
genetic screening have indicated that<br />
adolescents have a favourable attitude<br />
toward genetic technology and that the<br />
majority would elect to be screened<br />
for BRCA1/2 mutations if given the<br />
opportunity. However, less is known<br />
about the impact of maternal risk for<br />
breast cancer on children because the<br />
extent to which adults communicate<br />
genetic risk of breast cancer to children<br />
is relatively unknown.<br />
Dr. Mario Cappelli<br />
Limited research suggests that<br />
approximately 50% of women who<br />
are tested for the BRCA1/2 alterations<br />
elect to share their risk estimate results<br />
with dependent children under the<br />
age of 18. 7 However, the impact this<br />
may have on adolescent daughters<br />
is unclear at this time. Our current<br />
studies are investigating how families<br />
communicate about genetic risk for<br />
breast cancer and the impact this<br />
has on family coping. In addition to<br />
working with mothers and adolescent<br />
daughters, we are also looking for<br />
fathers to participate in our studies.<br />
Since breast cancer has traditionally<br />
been identified as a women’s health<br />
issue, researchers have tended to<br />
focus on female participants in their<br />
investigations of genetic mutations<br />
associated with breast cancer. The role<br />
of fathers in the negotiation of genetic<br />
risk for breast cancer is currently not<br />
well understood. However, indicators<br />
suggest that fathers demonstrate a<br />
strong desire to assist their daughters’<br />
roles in coping with their risk for<br />
breast cancer. Our research group will<br />
expand on this knowledge by defining<br />
the role that fathers play in daughters’<br />
conceptualization and interpretation<br />
of risk for BRCA1/2. This will be<br />
an important step in addressing<br />
how families cope with genetic risk<br />
for breast cancer and developing<br />
guidelines to assist health practitioners<br />
serving these families. •<br />
References<br />
1. <strong>Canadian</strong> <strong>Cancer</strong> Steering Committee<br />
(2009). <strong>Canadian</strong> <strong>Cancer</strong> Statistics, 2009.<br />
Toronto: <strong>Canadian</strong> <strong>Cancer</strong> Society.<br />
2. Hilton, B.A. & Gustavson,<br />
K. (2002). Shielding and being shielded:<br />
Children’s perspectives on coping<br />
with their mother’s cancer and<br />
chemotherapy. <strong>Canadian</strong> Oncology<br />
Nursing Journal, 12, 198-206.<br />
3. Forrest et al. (2006). <strong>Breast</strong> cancer in the<br />
family: Children’s perceptions of their<br />
mother’s cancer and initial treatment.<br />
BMJ, 332, 998-1003.<br />
4. Huizinga G.A., et al. (2005). Stress<br />
response symptoms in adolescent<br />
and young adult children of parents<br />
diagnosed with cancer. Eur J <strong>Cancer</strong>.<br />
2005, 2, 288-95.<br />
5. Compas B.E. et al., (1996).When mom<br />
or dad has cancer: II. Coping, cognitive<br />
appraisals, and psychological distress<br />
in children of cancer patients. Health<br />
Psychol., 3,167-75.<br />
6. Spira, M. and Kenemore, E. (2000)<br />
Adolescent daughters of mothers with<br />
breast cancer: Impact and implications.<br />
Clinical Social Work, 28, 183-194.<br />
7. Tercyak K. (2001). Psychological issues<br />
among children of hereditary breast<br />
cancer gene (BRCA1/2) testing<br />
participants. Psycho-oncology 10, 336-46.<br />
Melissa A. Vloet is a doctoral student<br />
in Clinical Psychology at the University<br />
of Ottawa. She previously attended the<br />
University of Prince Edward Island<br />
(UPEI) where she received the institution’s<br />
most prestigious entrance award and was<br />
recognized as an inaugural Wanda Wyatt<br />
Scholar. She graduated from UPEI in 2006<br />
with a Bachelor of Arts, double honours,<br />
in English Literature and Psychology.<br />
Since moving to Ottawa in 2006 to pursue<br />
graduate studies under the supervision<br />
of Dr. Mario Cappelli, Ms. Vloet has<br />
received a Doctoral Research Award from<br />
the <strong>Canadian</strong> Institute of Health Research<br />
and currently participates in their Child<br />
Clinician-Scientist Training Program.<br />
Her research to date has examined issues<br />
surrounding breast cancer diagnosis,<br />
parenting, genetic risk, and family<br />
communication. Most recently, Ms. Vloet<br />
attended the World Health Organization’s<br />
Women’s Mental Health Conference in<br />
Melbourne, Australia, where she presented<br />
some of her research findings to an<br />
international audience.<br />
Dr. Mario Cappelli is currently the<br />
Director of Mental Health Research at the<br />
Children’s Hospital of Eastern Ontario<br />
(CHEO) and the CHEO RI, a Clinical<br />
Professor of Psychology, Adjunct Professor<br />
of Psychiatry, Adjunct Professor in the<br />
Telfer School of Business and a Member<br />
of the Faculty of Graduate and Post-<br />
Doctoral Studies at the University of<br />
Ottawa. Dr. Cappelli first attended the<br />
University of Ottawa, graduating in 1983<br />
in psychology, and then attended Carleton<br />
University and obtained his MA (1986)<br />
and PhD (1991). Dr. Cappelli completed a<br />
pre-doctoral clinical internship at CHEO<br />
and obtained further clinical training at<br />
the Child and Family Centre, Chedoke-<br />
McMaster Hospital, as a post-doctoral<br />
fellow. Dr. Cappelli’s areas of expertise are<br />
clinical child and health psychology. After<br />
completing his PhD, Dr. Cappelli returned<br />
to CHEO and has worked in both inpatient<br />
and outpatient clinics. In addition to his<br />
clinical activities, Dr. Cappelli is involved<br />
with teaching and research. Dr. Cappelli’s<br />
research foci are in the health service and<br />
systems in the area of genetics and mental<br />
health. Dr. Cappelli’s research is funded by<br />
CIHR, MOHLTC and most recently the<br />
RBC Foundation.<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 29
Top 10 Things Young Previvors<br />
(Probably) Don’t Want to Hear<br />
By Steph H.<br />
10) But you’re so young!<br />
Well, I’m staring down the big 3-1<br />
next week, so I don’t really think I’m<br />
all that young any more (but not yet<br />
middle-aged... didn’t Britney Spears<br />
write a song about that?), but all that<br />
is beside the point. Young women do<br />
get breast cancer, and young women<br />
with the breast cancer gene, especially,<br />
get breast cancer. In fact, recent studies<br />
suggest that women with BRCA<br />
mutations are getting sick an average<br />
of six years earlier than the previous<br />
generation. So we’re never too young<br />
to get breast cancer.<br />
9) Well, if you get breast cancer, at<br />
least it’s curable.<br />
This impression that breast cancer<br />
is somehow the “good cancer” to<br />
get befuddles me. Have we really<br />
sanitized the disease so much with<br />
all the pink ribbons and smiling bald<br />
ladies in ads that breast cancer has just<br />
become a woman’s right of passage?<br />
<strong>Breast</strong> cancer changes lives. And breast<br />
cancer ends lives. I’m not sure why<br />
we have forgotten (willfully ignored?)<br />
this inconvenient truth. And unless I<br />
missed the headlines, there still is no<br />
cure for cancer. What’s more, women<br />
with BRCA mutations who have had<br />
breast cancer have a 40% chance of<br />
recurrence and an elevated risk of<br />
developing second primary cancers.<br />
In other words, breast cancer isn’t like<br />
chicken pox, folks. You don’t get it<br />
once and are immune to it forever.<br />
8) You’re removing healthy body<br />
parts that may never develop<br />
cancer. That’s crazy.<br />
To you, maybe. But to me, it’s the<br />
opposite of crazy. It’s totally sane and<br />
rational. I have a nearly 90% chance of<br />
getting a disease I know I can prevent<br />
if I have this surgery. What’s crazier,<br />
getting it when you didn’t have to or<br />
not getting it because you had surgery?<br />
I’m going to go with what’s behind<br />
door number two, Monty.<br />
7) So wait. If I was told I had the<br />
brain cancer gene, I’d have to<br />
remove my brain?<br />
Are you sure you haven’t already?<br />
No. You would not remove your<br />
brain because you need it to live. I am<br />
removing my breasts because I can live<br />
(both figuratively and literally) without<br />
them. No, I won’t be able to breastfeed,<br />
which is evolutionarily their only<br />
function. But my future children will<br />
survive and thrive on formula. Lots<br />
of people weren’t breastfed. And they<br />
turned out fine. My kids will be, too.<br />
6) That’s not what I would do.<br />
You are free to think that, but I don’t<br />
want to hear it. Truthfully, youimaginary-person-who-doesn’t-havethe-BRCA-mutation,<br />
I don’t really care<br />
what you would do because you don’t<br />
know what it feels like to be me. So<br />
zip it.<br />
5) What if you have the surgery<br />
and then die of something else?<br />
Well, that’s the point right? Not to die<br />
of breast cancer? I don’t know how<br />
long I’ve got, but I’d like to spend my<br />
time here without breast cancer.<br />
4) Look on the bright side; You’re<br />
getting a free boob job!<br />
Reconstruction does not equal a boob<br />
job, folks. Enough said.<br />
3) I always hated my boobs. You’re<br />
lucky to be getting rid of them.<br />
I know lots of women out there have<br />
vexed relationships with their bodies,<br />
and there are parts of mine (armpit fat<br />
area, I’m looking at you) that I hate.<br />
But my boobs are not one of them. I<br />
really like my boobs. They were totally<br />
unexpected additions to my life. I lived<br />
until age 21 without ever needing<br />
to actually wear a bra. And then<br />
suddenly, I needed one. A lot. And<br />
part of me is still that desperately flatchested,<br />
square torso-ed boy-shaped<br />
girl. So when I see these womanly<br />
mounds on my body, I do a silent<br />
little touch-down celebration. Because<br />
I wanted them for so long and they<br />
finally arrived and they are beautiful.<br />
So, no, I’m not lucky to be getting rid<br />
of them. I’m lucky for the time I had<br />
with them.<br />
2) You should do [insert healthy<br />
lifestyle choice]. I hear that helps<br />
prevent breast cancer.<br />
Well, if we knew how to prevent it, no<br />
one would get it, right? I hate to be so<br />
pessimistic, but, especially in women<br />
with BRCA mutations, all of this<br />
healthy-lifestyle-doing-yoga-drinkinggreen-tea-taking-vitamins,<br />
seems like<br />
tilting at windmills to me. But, I’ll<br />
play along. So, to prevent cancer I<br />
need to be healthy. But I already am.<br />
Vegetarian? Check. Runner? Check.<br />
Yogi? Check. Non-smoker? Check. I’m<br />
doing all I can here, folks. I’m staring<br />
down a 9 in 10 chance of getting breast<br />
cancer. I wonder really what difference<br />
it makes if I forgo that Diet Coke or<br />
glass of white wine.<br />
1) Don’t do anything drastic yet.<br />
There will be a cure soon.<br />
I sincerely hope you are right. And I<br />
sincerely hope that in five, ten, twenty<br />
years, prophylactic mastectomies<br />
for high-risk women will seem as<br />
draconian as bloodletting. But I’m not<br />
going to stand around idly and wait<br />
for miraculous medical advances. I’m<br />
doing the best with the technology<br />
and understanding we currently have.<br />
Top Ten Things Young<br />
Previvors (Probably)<br />
Want to Hear<br />
10) Is there anything I can do? Do<br />
you need a ride anywhere?<br />
Wanna grab a drink?<br />
Continued on Page 35 <br />
30 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
Familial <strong>Breast</strong> <strong>Cancer</strong> and No BRCA1/2 Mutation?<br />
Uninformative Results and How the Familial <strong>Breast</strong> <strong>Cancer</strong> Research Unit<br />
is Seeking Answers<br />
By Jillian Alston, MD Candidate<br />
In the mid-nineties, the discovery<br />
of the BRCA1 and 2 mutations<br />
answered some of the questions<br />
that many had about the alarming<br />
number of breast and/or ovarian<br />
cancers in their family. Furthermore, a<br />
woman from such a family who has not<br />
been diagnosed with cancer can now<br />
establish her risk of breast cancer by<br />
being tested for her family’s hereditary<br />
gene. Women who receive positive<br />
results struggle with how to manage<br />
their increased risk. Fortunately there<br />
are recommendations for BRCA1/<br />
BRCA2 carriers with ever-growing<br />
research to improve the management<br />
and prevention of cancer in these<br />
families. I am aware that I have<br />
immensely minimized the complex<br />
nature of the genetic testing process<br />
and all of its considerations, including<br />
its influence on psychological wellbeing<br />
and family dynamics. As well, in<br />
no way do I wish to oversimplify the<br />
difficulty of one’s journey of living with<br />
a BRCA1/2 mutation.<br />
Jillian Alston<br />
However, the focus of this article<br />
is on those women who have an<br />
overwhelming number of relatives<br />
diagnosed with breast cancer – but<br />
who do not have a known mutation in<br />
their family. Approximately 15-20% of<br />
women who are diagnosed with breast<br />
cancer have a strong family history of<br />
breast cancer. This number includes the<br />
5% incidence of breast cancer that is<br />
found in women with a mutation in one<br />
of the two known breast cancer genes,<br />
BRCA1 and BRCA2. This indicates that<br />
the majority of women who have had<br />
genetic testing for their familial breast<br />
cancer have no specific genetic reason<br />
for the family history, in that they<br />
receive an “uninformative result.”<br />
Women who have a significant 1 breast<br />
cancer history in their family are two to<br />
four times more likely to develop breast<br />
cancer than females without a significant<br />
family history, even if they do not<br />
have a BRCA1 and BRCA2 mutation. 2<br />
There is currently little information<br />
available to inform these women and<br />
their physicians about screening and<br />
prevention practices. Unlike BRCA1/2<br />
mutation carriers, there is no established<br />
standard for offering earlier screening<br />
(either mammography or MRI), or<br />
for offering chemoprevention or<br />
prophylactic surgeries (e.g. bilateral<br />
mastectomy or bilateral salpingooophorectomy).<br />
Dr. Steven Narod and his research team<br />
at the Familial <strong>Breast</strong> <strong>Cancer</strong> Research<br />
Unit of Women’s College Research<br />
Institute in Toronto, are trying to<br />
improve the care of these families by<br />
initiating the research study Risk Factor<br />
Analysis of Familial <strong>Breast</strong> <strong>Cancer</strong>. This<br />
is an unprecedented long-term study<br />
of women with strong family histories<br />
of breast cancer who do not carry a<br />
mutation in one of the two breast cancer<br />
genes (BRCA1/BRCA2).<br />
The study involves testing for other<br />
positive genetic markers of breast cancer<br />
as well as examining the interaction<br />
between other various factors that<br />
may be associated with breast cancer<br />
development in women from highrisk<br />
families. Some of these include<br />
Vitamin D levels, insulin levels, dietary<br />
factors, demographic characteristics and<br />
others factors. As well, the study will<br />
examine the effectiveness of prevention<br />
strategies that various women use. The<br />
goal is to hopefully develop future<br />
recommendations for the prevention and<br />
management of familial breast cancer.<br />
If you are concerned about the incidence<br />
of breast cancer in your family or if you<br />
are concerned about breast cancer with<br />
the future generation of your family, the<br />
research team invites you to take part<br />
in this study. The team is looking for<br />
women who have a significant family<br />
history of breast cancer and who have<br />
no known BRCA1/2 mutations in their<br />
family.<br />
For more information about the<br />
study, or to see if you are eligible to<br />
participate, please visit:<br />
http://www.womensresearch.<br />
ca/noncarrierstudy/index.php.<br />
Alternatively, you may contact Jill by<br />
email at jillian.alston@wchospital.ca or<br />
call 416-351-3800 ext 2715.<br />
The Familial <strong>Breast</strong> <strong>Cancer</strong><br />
Research Unit<br />
World-renowned research to improve the<br />
lives of families with familial breast cancer<br />
Dr. Steven Narod<br />
The Familial <strong>Breast</strong> <strong>Cancer</strong> Research<br />
Unit is a division of the Women’s<br />
College Research Unit. Under the<br />
direction of Dr. Steven Narod, the<br />
world’s most cited breast cancer<br />
researcher, the unit conducts worldclass<br />
research that contributes to the<br />
prevention and management strategies<br />
for women with familial breast cancer<br />
and their families.<br />
The unit offers a service of genetic<br />
counsellors that support women and<br />
their families through the genetic testing<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 31
process. They discuss their options and<br />
implications of genetic testing. As well,<br />
these interactions are the source of new<br />
research questions.<br />
For more information about the Familial<br />
<strong>Breast</strong> <strong>Cancer</strong> Research Institute, please<br />
visit: http://www.womensresearch.ca/<br />
programs/genetic_cancer.php. •<br />
References<br />
1 Significant Family History is defined as having<br />
either two female relatives diagnosed<br />
with breast cancer under 50 OR three (or<br />
more) female relatives diagnosed at any<br />
age on the same side of the family (within<br />
first and second degree relatives).<br />
2 Your individual risk of developing breast<br />
cancer may vary from this number, and as<br />
part of this study, we hope to better understand<br />
the influence of family history on the<br />
risk of developing breast cancer.<br />
Jillian Alston is a second year medical<br />
student at the University of Toronto. She<br />
is completing the Comprehensive Research<br />
Experience for Medical Students Distinction<br />
and Research Program at the Familial <strong>Breast</strong><br />
<strong>Cancer</strong> Research Unit. She has a Bachelors<br />
of Health Sciences Honours degree from<br />
McMaster University. Jillian hopes to<br />
continue research throughout her career as a<br />
medical doctor.<br />
Dr. Steven Narod is a Tier I Canada<br />
Research Chair in <strong>Breast</strong> <strong>Cancer</strong>. He is a<br />
professor in the Department of Public Health<br />
Sciences at the University of Toronto.<br />
Research and Academic Interests: Dr. Narod<br />
conducts longitudinal studies of women from<br />
families with and without genetic mutations<br />
related to breast cancer. He is currently<br />
focused on translating our emerging<br />
knowledge about hereditary cancer into<br />
more effective strategies for the prevention<br />
and management of breast and ovarian<br />
cancer. He is also interested in delineating<br />
the gene/environment interactions that<br />
underlie hereditary breast cancer. This<br />
work may eventually be used to identify<br />
potential modifiers of cancer risk in highprevalence<br />
groups. He is currently principal<br />
investigator on a number of studies looking<br />
at risk factors associated with hereditary<br />
breast and ovarian cancer, investigating the<br />
role of BRCA2 mutations in ovarian cancer,<br />
and investigating the contributions of CHK2<br />
gene mutations to breast cancer risk. He also<br />
participates as a co-investigator on a wide<br />
range of hereditary cancer studies conducted<br />
by his students and international colleagues.<br />
Willow’s Program for Hereditary<br />
<strong>Breast</strong> and Ovarian <strong>Cancer</strong><br />
Willow <strong>Breast</strong> <strong>Cancer</strong> Support Canada offers four programs for women at<br />
risk for Hereditary <strong>Breast</strong> and Ovarian <strong>Cancer</strong> (HBOC):<br />
• Peer Support Program<br />
• Personalized HBOC Information Packages<br />
• How to connect with others like yourself at www.willow-talk.org<br />
• How to start your own BRCA 1 and BRCA 2 Support Groups<br />
Peer Support Program<br />
Willow’s Peer Support Team answers a wide range of questions related to<br />
Hereditary <strong>Breast</strong> and Ovarian <strong>Cancer</strong>. The Peer Support Team provides<br />
support and information that will help you to better understand a positive<br />
BRCA gene mutation diagnosis and related risk management options. Willow<br />
can help by offering suggestions such as how to talk to your family members<br />
about their potential risk of having a BRCA 1 or BRCA 2 gene mutation.<br />
Willow also offers free interpreter services for individuals wishing to speak<br />
in their language of choice. All calls are fielded by trained breast cancer<br />
survivors.<br />
Personalized HBOC Information Packages<br />
Willow will provide you with current, credible and clear information on<br />
all topics related to HBOC. Willow’s health librarian works with the Peer<br />
Support Team to research your specific questions and to send you a free<br />
personalized information package, either by e-mail or by post.<br />
Join www.willow-talk.org<br />
Willow’s online social networking community connects <strong>Canadian</strong> women who<br />
are at high risk for breast cancer. Willow-talk.org provides a forum to share<br />
your experience and exchange information.<br />
New HBOC Initiatives for <strong>2010</strong><br />
Thanks to a grant from the Public Health Agency of Canada, Willow is<br />
developing programs for high risk women and their families. As part of<br />
this new initiative, there is a comprehensive <strong>Canadian</strong> HBOC-specific<br />
website containing relevant information, resources and online networking<br />
opportunities for <strong>Canadian</strong>s affected by a hereditary diagnosis. Willow is<br />
also developing a series of targeted, diagnostically appropriate fact sheets on<br />
topics relevant to high risk women. •<br />
Willow <strong>Breast</strong> <strong>Cancer</strong> Support Canada is a breast cancer support organization that<br />
provides free and accessible community-based, survivor-driven information and<br />
emotional support services for those impacted by breast cancer.<br />
For more information please call Willow at 1-888-778-3100 or visit<br />
www.willow.org .<br />
32 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
‘E’ is for Empowered - Are You an e-patient?<br />
By Colleen Young<br />
Do you look for health information<br />
on the Internet and discuss what<br />
you find with your doctor?<br />
Have you ever read a posting on a<br />
discussion forum and thought, “Yeah,<br />
I have that side effect too. I’m going to<br />
talk to my doctor about it?” Then you<br />
are an e-patient – equipped, enabled,<br />
empowered and engaged in your health<br />
and your healthcare decisions.<br />
According to Wikipedia, “e-Patients are<br />
health consumers who use the Internet<br />
to gather information about a medical<br />
condition of particular interest to them.<br />
The term encompasses both those who<br />
seek online guidance for their own<br />
ailments and the friends and family<br />
members (e-Caregivers) who go online<br />
on their behalf. e-Patients report two<br />
effects of their online health research:<br />
“Better health information and services,<br />
and different (but not always better)<br />
relationships with their doctors.”<br />
Patients no longer want to receive<br />
health care passively. We want access<br />
to information and to our medical<br />
records, and we want to connect and<br />
collaborate with our peers. Online<br />
information, tools that organize health<br />
data (Google Health) and social<br />
networking tools (discussion forums,<br />
blogs, wikis, Facebook, Twitter, etc.)<br />
are letting us do this in ways never<br />
before possible.<br />
And, healthcare providers are<br />
beginning to understand that patient<br />
knowledge counts. The authors of the<br />
paper e-Patients: How They can Help<br />
us Heal Healthcare acknowledged that<br />
healthcare providers:<br />
• Should recognize that e-patients are<br />
valuable contributors to health care<br />
• Have overestimated the hazards of<br />
imperfect online health information.<br />
Patients are capable of gathering<br />
quality health information online<br />
• Have underestimated a patient’s<br />
ability to provide useful online<br />
resources<br />
• Can no longer go it alone. The most<br />
effective way to improve healthcare<br />
is to make it more collaborative<br />
Gone are the days when the doctor was<br />
the only source of medical information<br />
and care. As cancer survivor and<br />
e-patient, Dave deBronkart<br />
(http://patientdave.blogspot.com/)<br />
states, “Ushering in the era of the<br />
participatory patient doesn’t mean<br />
that ‘doctor knows best’ has shifted to<br />
‘patient knows best.’ The new patientdoctor<br />
relationship is a collaborative<br />
partnership.”<br />
Collective knowledge and experience<br />
shared online is valuable. Healthcare<br />
providers need to embrace the wisdom<br />
of community knowledge. Together we<br />
can build confidence in participatory<br />
medicine – a cooperative model of<br />
healthcare that encourages and expects<br />
the active involvement of patients,<br />
caregivers and healthcare providers.<br />
Want to be an empowered patient?<br />
You can take an active role in your<br />
cancer care. Here are a few tips to get<br />
you started.<br />
• Gather information<br />
When using the Internet, make<br />
sure the information is accurate,<br />
objective and trustworthy.<br />
Websites like www.CBCN.ca and<br />
www.SharingStrength.ca are good<br />
places to start.<br />
• Tap into community knowledge<br />
<strong>Breast</strong> cancer support groups and<br />
online communities are a great<br />
place to ask questions and get<br />
answers. Check out the online<br />
forums at: <strong>Breast</strong> <strong>Cancer</strong> Action<br />
Nova Scotia (http://bca.ns.ca);<br />
www.breastcancer.org; <strong>Breast</strong><br />
<strong>Cancer</strong> Now What?<br />
(www.breastcancernowwhat.ca);<br />
Caring Voices<br />
(www.caringvoices.ca); Willow-<br />
Talk (www.willow-talk.org).<br />
• Keep track of your health record<br />
Maintaining an electronic or hard<br />
copy of your own health record<br />
can be useful when talking to your<br />
cancer care team and coordinating<br />
your care. For more information on<br />
health records, please visit<br />
www.SharingStrength.ca.<br />
• Talk to your health care provider<br />
Tell your doctor that you want to<br />
take an active role in your care. Ask<br />
questions. Recommend websites to<br />
your cancer care team. •<br />
Colleen Young is a medical oncology<br />
writer who takes particular interest in<br />
writing clear, easy-to-read literature<br />
for cancer patients. While not a cancer<br />
survivor herself, Colleen advocates for<br />
patients, survivors and caregivers. She<br />
works closely with cancer centres and<br />
support organizations to help ensure<br />
that those touched by cancer get the<br />
information and support they are looking<br />
for through the printed word. Colleen’s<br />
role on SharingStrength helps her<br />
stay connected with the breast cancer<br />
community. Along with moderating the<br />
discussion forums on SharingStrength, she<br />
raises and discusses important community<br />
issues in the Editor’s Feature and Blog. To<br />
follow Colleen Young and SharingStrength<br />
on Twitter, please visit http://twitter.com/<br />
SharingStrength.<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 33
CBCN: Here for You<br />
Donors are important partners at<br />
CBCN, in good times and in bad times.<br />
In good times, individual gifts, large<br />
or small, enable us to bring your<br />
donations together to develop services<br />
or resources directly requested by<br />
survivors and patients. You know<br />
these are not always the same projects<br />
that are favored by priorities of<br />
government and foundation funders.<br />
In bad times our caring donors stretch<br />
to find a little more to keep funds<br />
flowing for services to breast cancer<br />
patients and survivors.<br />
If you have<br />
• attended the Young Women with<br />
<strong>Breast</strong> <strong>Cancer</strong> Conference or want<br />
to attend the next one<br />
• called the CBCN office after a<br />
diagnosis looking for resources in<br />
your area,<br />
• esearched on our web site for<br />
groups or resources of all kinds,<br />
(60,000 people a month do!)<br />
• received our newsletter <strong>Network</strong><br />
<strong>News</strong>, which you are reading now,<br />
still free, you know the importance<br />
of these projects<br />
• received our online newsletter<br />
Outreach for breaking news<br />
• joined our Adopt a Riding<br />
Campaign for survivor advocacy<br />
• joined and participated in one of<br />
our project advisory committees<br />
You know the importance of these<br />
services!<br />
Be a partner in funding them now!<br />
Join our caring, compassionate and<br />
smart donors who continue to invest in<br />
support and advocacy for breast cancer<br />
patients and survivors.<br />
“Survivor” means much more than a<br />
television show!<br />
Tell us what “Survivor” means to you<br />
and we will publish your email and/or<br />
letters in our next <strong>Network</strong> <strong>News</strong>.<br />
Give to keep the survivor voice strong!<br />
We are your “someone to turn to” for<br />
information you need now.<br />
Your investment in CBCN keeps the<br />
good work of our mission going and<br />
keeps us available for women newly<br />
diagnosed and breast cancer survivors<br />
across the country.<br />
As a unique organization in being<br />
the only national survivor-led<br />
organization dedicated to breast cancer<br />
survivors, we are confident that donors<br />
will continue to see the value in their<br />
choice to support us, even in difficult<br />
times.<br />
Ways to give:<br />
Easiest, go to the CanadaHelps web<br />
site, a secure site serving <strong>Canadian</strong><br />
charities.<br />
Once there, type in <strong>Canadian</strong> <strong>Breast</strong><br />
<strong>Cancer</strong> <strong>Network</strong> and you will arrive<br />
at our giving page, just follow the<br />
instructions. Your receipt, recognized<br />
by Revenue Canada for income tax<br />
purposes, will arrive within hours by<br />
email.<br />
Consider monthly giving – even $25 a<br />
month will make a difference!<br />
Or, send a cheque made out to<br />
<strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong>, 331<br />
Cooper Street, Suite 300, Ottawa ON<br />
K2P 0G5.<br />
You can also call CBCN at our toll-free<br />
number 1-800-685-8820 and Maureen<br />
or Judy will take your credit card<br />
donation.<br />
We appreciate our donors!<br />
CBCN’s Website Friends<br />
Remembered Pages<br />
The <strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> has established The Friends Remembered Pages so<br />
we can remember and share the lives of relatives, friends and others near and dear whom<br />
we have lost to breast cancer, and to celebrate their lives as well as the lives of women and<br />
men who have survived breast cancer and who continue to live with us in this world as<br />
well as in our hearts and minds.<br />
We invite you to contribute obituaries, stories, articles, poems, anecdotes and photos to this<br />
section about Friends you remember. Send them to cbcn@cbcn.ca.<br />
34 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>
Continued from Page 30<br />
Top 10 Things Young Previvors (Probably)<br />
Want to Hear<br />
9) I’ll be there for you.<br />
8) Good for you for doing what’s<br />
right for you.<br />
Members, Friends, Funding Partners<br />
and Corporate Friends<br />
CBCN gratefully acknowledges the following individuals<br />
and organizations for their financial contributions for this<br />
financial year (July 1, 2009 to present)<br />
7) I don’t want you to get breast<br />
cancer, either.<br />
6) I don’t know what it must feel<br />
like to be going through what<br />
you are going through, but I<br />
know it sucks.<br />
5) Talk to me. I’m here to listen.<br />
4) When you are recovering from<br />
surgery, I’ll come over and<br />
watch DVDs with you, wash<br />
your hair, and bring you vegan<br />
junk food.<br />
3) You are brave.<br />
2) You are strong.<br />
1) You will still be beautiful. •<br />
Steph H. is a young previvor living in<br />
Chicago. Check out her blog at<br />
http://goodbyetoboobs.blogspot.com/<br />
Member ($25-$99)<br />
• Hundreds of individuals and groups<br />
across the country<br />
Friends of CBCN ($100-$499)<br />
• Alwyn Anderson<br />
• Dolores Ast<br />
• Lisa Bélanger<br />
• Eva Bereti<br />
• Isabel Burrows<br />
• Dr. Eva Butler<br />
• Carol Ann Cole<br />
• Dr. Brian D. Doan<br />
• Karen DeKoning<br />
• Helen Elsaesser<br />
• Beata Faraklas of All Hair Alternatives<br />
& Mastectomy Boutique<br />
• Chris Foster<br />
• Ratna Ghosh<br />
• Dolores Griffin<br />
• Darlene Halwas<br />
• Holly Hinds<br />
• Maureen Jackman<br />
• Fran Jones<br />
• Dr. Helen M. Madill<br />
• Diane Moore<br />
• Patricia Moore<br />
• Laurie Porovsky-Beachell<br />
• Mary Rogers<br />
• Lyle Spencer<br />
• Charles & Nancy Weisdorff<br />
• Jan Zwicky<br />
Bronze Level Supporter<br />
($500-$4,999)<br />
• Bell Canada<br />
• CyberAlert<br />
• Telus Communications<br />
• Tencor<br />
• Virage<br />
Silver Level Supporters<br />
($5,000-$24,999)<br />
• Dell<br />
• Mike’s Hard Pink Lemonade<br />
• Temerty Family Foundation<br />
• The Harold Crabtree Foundation<br />
• The Quilt Project<br />
Gold Level Supporter<br />
($25,000-$99,999)<br />
• AstraZeneca<br />
• GlaxoSmithKline<br />
• Novartis<br />
• Pfizer<br />
• Roche<br />
• The Cure Foundation<br />
Platinum Level Supporter<br />
($100,000 and over)<br />
• <strong>Breast</strong> <strong>Cancer</strong> Society of Canada<br />
Government<br />
• City of Ottawa, Ottawa Partnership for Jobs<br />
• Ministry of Training, Colleges and<br />
Universities, Government of Ontario<br />
• Public Health Agency of Canada<br />
• Service Canada<br />
• Canada Summer Jobs<br />
Corporate Sponsors<br />
• National Fundraising <strong>Network</strong> / Chocolates<br />
for Charity<br />
• Pizzazzing You<br />
• Sassy Sam’s<br />
• MOMPowered Inc.<br />
• Novelty Canada<br />
• <strong>Canadian</strong> Gift Concepts<br />
<strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong> 35
<strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> Partners<br />
National Partners<br />
• <strong>Breast</strong> <strong>Cancer</strong> Society of Canada<br />
• <strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> Foundation<br />
• <strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> Research Alliance<br />
• <strong>Canadian</strong> <strong>Cancer</strong> Society<br />
• National <strong>Cancer</strong> Institute of Canada<br />
• Ovarian <strong>Cancer</strong> Canada<br />
• Willow <strong>Breast</strong> <strong>Cancer</strong> Support Canada<br />
• World Conference on <strong>Breast</strong> <strong>Cancer</strong><br />
Provincial/Territorial <strong>Network</strong>s<br />
• BC/Yukon <strong>Breast</strong> & Gynecologic <strong>Cancer</strong> Alliance<br />
• <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> Nova Scotia<br />
• Manitoba <strong>Breast</strong> and Women’s <strong>Cancer</strong> <strong>Network</strong><br />
• New Brunswick <strong>Breast</strong> <strong>Cancer</strong> Information Partnership<br />
• Northwest Territories <strong>Breast</strong> Health/<strong>Breast</strong> <strong>Cancer</strong> Action Group<br />
• Nunavut <strong>Cancer</strong> <strong>Network</strong><br />
• Ontario <strong>Breast</strong> <strong>Cancer</strong> Exchange Project (OBCEP)<br />
• Prince Edward Island <strong>Breast</strong> <strong>Cancer</strong> Information Partnership<br />
• Saskatchewan <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> (SBCN)<br />
• The Newfoundland and Labrador Lupin Partnership<br />
Provincial/Territorial/Regional/Local Partners<br />
• Amitié Santé 04<br />
• Association à fleur de sein<br />
• Au Seingulier<br />
• <strong>Breast</strong> <strong>Cancer</strong> Action Kingston<br />
• <strong>Breast</strong> <strong>Cancer</strong> Action Manitoba<br />
• <strong>Breast</strong> <strong>Cancer</strong> Action Montréal<br />
• <strong>Breast</strong> <strong>Cancer</strong> Action Nova Scotia (BCANS)<br />
• <strong>Breast</strong> <strong>Cancer</strong> Action (Ottawa)<br />
• <strong>Breast</strong> <strong>Cancer</strong> Action Saskatchewan<br />
• <strong>Breast</strong> <strong>Cancer</strong> Centre of Hope (Winnipeg, Manitoba)<br />
• <strong>Breast</strong> <strong>Cancer</strong> InfoLink (Calgary)<br />
• <strong>Breast</strong> <strong>Cancer</strong> Support Services Inc. (Burlington, ON)<br />
• <strong>Breast</strong> <strong>Cancer</strong> Research and Education Fund<br />
• <strong>Breast</strong> Health Centre of the Winnipeg Regional Health Authority<br />
• <strong>Breast</strong> of Canada Calendar<br />
• <strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> Foundation – Ontario Chapter<br />
• <strong>Cancer</strong> Care Manitoba – <strong>Breast</strong> <strong>Cancer</strong> Centre of Hope<br />
• First Nations <strong>Breast</strong> <strong>Cancer</strong> Society<br />
• FLOW<br />
• Hereditary <strong>Breast</strong> & Ovarian <strong>Cancer</strong> Society of Alberta<br />
• Manitoba <strong>Breast</strong> <strong>Cancer</strong> Survivors Chemo Savvy Dragon Boat<br />
Team (Winnipeg)<br />
• Miles to Go Healing Circle - Six Nations (Ontario)<br />
• New Brunswick <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong><br />
• Organisation québécoise des personnes atteintes de cancer<br />
• Prince Edward Island <strong>Breast</strong> <strong>Cancer</strong> Support Group<br />
• ReThink <strong>Breast</strong> <strong>Cancer</strong><br />
• Sauders-Matthey <strong>Cancer</strong> Prevention Coalition<br />
• Sentier nouveau Inc.<br />
• Sister to Sister: Black Women’s <strong>Breast</strong> <strong>Cancer</strong> Support Group<br />
(Halifax, NS)<br />
• Soli-Can<br />
• The Young and the <strong>Breast</strong>less<br />
• Virage, Hôpital Notre-Dame du CHUM<br />
Key Partners in Other Sectors<br />
• Amyotrophic Lateral Sclerosis Society of Canada (ALS)<br />
• Anemia Institute of Canada<br />
• <strong>Canadian</strong> Health Coalition<br />
• <strong>Canadian</strong> Health <strong>Network</strong><br />
• <strong>Canadian</strong> Hospice Palliative Care Association<br />
• <strong>Canadian</strong> Organization for Rare Disorders<br />
• <strong>Canadian</strong> Prostate <strong>Cancer</strong> <strong>Network</strong>/National Association of<br />
Prostate <strong>Cancer</strong> Support Groups<br />
• <strong>Canadian</strong> Science Writers’ Association<br />
• DisAlbed Women’s <strong>Network</strong> Ontario<br />
• Epilepsy Canada<br />
• Early Prostate <strong>Cancer</strong> Diagnosis Ontario<br />
• HPV and Cervical Health Society<br />
• National Council of Jewish Women of Canada<br />
• National Council of Women of Canada<br />
• Newfoundland and Labrador Women’s Institutes<br />
• Ontario Health Promotion Project<br />
• Ottawa Health Coalition<br />
• Parent Action on Drugs<br />
• Quality End-of-Life Care Coalition<br />
• Women’s Centre of Montreal<br />
• Women, Health and Environments <strong>Network</strong><br />
• Women and Rural Economic Development<br />
International Partners<br />
• National <strong>Breast</strong> <strong>Cancer</strong> Coalition (Washington, D.C.)<br />
• Philippine <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong><br />
CBCN is represented on the following groups<br />
• Best Medicines Coalition<br />
• <strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> Research Alliance (CBCRA)<br />
• <strong>Canadian</strong> <strong>Cancer</strong> Action <strong>Network</strong> (CCAN)<br />
• <strong>Canadian</strong> Association of Psychosocial Oncology Ad-hoc<br />
Project Team for the project Creating a Community for<br />
Knowledge Exchange and Capacity Building<br />
• <strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> Screening Initiative<br />
• Coalition priorité cancer au Québec<br />
• Community Capacity Building Committee, <strong>Canadian</strong> <strong>Breast</strong><br />
<strong>Cancer</strong> Initiative, Public Health Agency of Canada<br />
• Episodic Disabilities <strong>Network</strong><br />
• Metastatic <strong>Breast</strong> <strong>Cancer</strong> Global Advocacy Advisory Board<br />
• Provincial <strong>Cancer</strong> Control Strategy, Newfoundland and<br />
Labrador<br />
• Provincial Wellness Coalition Sub-committee for Healthy<br />
Living, Newfoundland and Labrador<br />
• Saskatchewan <strong>Cancer</strong> Advocacy <strong>Network</strong><br />
36 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>