Network News - Winter/Spring 2010 - Canadian Breast Cancer ...

Canadian Breast Cancer Network Winter/Spring 2010 

Canadian Breast Cancer Network 

Vol. 14, N o 1 

Network News 

eSSeNtIAL NeWS FoR CANAdIANS AFFeCted BY BReASt CANCeR 


BRCA Genes Special Issue 

Lynda McHenry enjoying time with her three daughters 

(from left clockwise) Leah, Sara, Lana, Lynda

Network News 

Volume 14, Number 1, Winter/Spring 2010 

ISSN: 1481-0999 Circulation: 6,500 

PUBLICATIONS MAIL AGREEMENT NO. 40028655 

RETURN UNDELIVERABLE CANADIAN ADDRESSES TO 

CANADIAN BREAST CANCER NETWORK 

331 COOPER ST, SUITE 300, OTTAWA ON K2P 0G5 

E-mail: cbcn@cbcn.ca 

Network News is published by the Canadian 

Breast Cancer Network (CBCN) to provide 

the breast cancer community with up-to-date 

and understandable information on issues at 

the national level, to promote education and 

awareness, and to highlight the concerns of 

Canadians affected by breast cancer. 

We would like to thank the individuals who 

wrote articles and the breast and ovarian cancer 

support groups that provided information. We 

welcome your ideas, contributions and letters, 

subject to editing and available space. The 

articles in this issue do not necessarily represent 

the views of CBCN but are the opinions of the 

authors. CBCN gives permission to copy with 

attribution. 

Canadian Breast Cancer Network, 

331 Cooper Street, Suite 300, 

Ottawa, ON K2P 0G5. Tel.: (613) 230-3044. 

1-800-685-8820. Fax: (613) 230-4424. 

E-mail: cbcn@cbcn.ca. Website: www.cbcn.ca. 

Editor: Jackie Manthorne 

Editorial Committee: Mona Forrest, 

Jackie Manthorne 

Guest Editor: Colleen Lyle 

Contributors: Cathy Ammendolea; Jackie 

Manthorne; Kelly Metcalfe, RN, PhD; Lorna 

Marshall; Dawna M. Gilchrist, MD, FRCPC, 

FCCMG, DHMSA; Hereditary Breast and Ovarian 

Cancer Foundation; Jodi Wilkie, B.Sc. Pharm.; 

Jane Jancovic; Hereditary Breast & Ovarian 

Cancer Society of Alberta; Susan Armel, MS, 

CGC Genetic Counsellor; Rochelle Demsky, MS, 

CGC Genetic Counsellor; Fran Turner; Mary Jane 

Esplen, PhD, RN; Lynda McHenry; Melissa A. 

Vloet, PhD Candidate; Mario Capelli, PhD, C. 

Psych.; Steph H.; Jillian Alston, MD Candidate; 

Willow Breast Cancer Support Canada; Colleen 

Young 

Translation: Martin Dufresne; Francine Lanoix; 

Jeanne Duhaime; Reine Daas; Véronique Lacroix 

Cover Photo: Lynda McHenry, contributor, 

enjoying time with her three daughters. Clockwise 

Lynda, Leah, Sara, Lana 

Staff: Jackie Manthorne, Executive Director, 

jmanthorne@cbcn.ca; Mona Forrest, Director 

of Development, mforrest@cbcn.ca; Jenn 

McNeil, Project Coordinator, jmcneil@cbcn. 

ca; Tiffany Glover, Public Relations and 

Government Relations Manager, tglover@cbcn. 

ca; Colleen Lyle, Communications Manager, 

clyle@cbcn.ca (on leave); Heather Sullivan, 

Communications and Information Coordinator, 

hsullivan@cbcn.ca; Sparrow McGowan, Web 

Coordinator, smcgowan@cbcn.ca; Maureen Kelly, 

Receptionist, maureen@cbcnc.ca; Judy Proulx, 

Receptionist, jproulx@cbcn.ca; Sandie Lessard, 

Bookkeeper, sandie@cbcn.ca 

President’s Report 

By Cathy Ammendolea 

I 

am very proud to serve as the president of Canadian 

Breast Cancer Network (CBCN). I am also proud 

to dedicate my first President’s Report to the 

memory of “Vi,” a woman who introduced me to the 

issue of breast cancer. In 1980, I began working as an 

administrator for a small medical office. I was 23 years Cathy Ammendolea, 

President of Canadian Breast 

old and a young mother of a three-year-old daughter. Cancer Network 

During my first day on the job I was welcomed by all 

the members of the office. Vi introduced herself, greeted 

me with a cheery smile and said, “Hi, my name is Vi, short for Violet. I am the nurse 

practitioner. It is a pleasure to meet you.” Then she added, “Oh, by the way, I’m 

wearing a wig because I am currently on chemo treatment for breast cancer.” 

My heart skipped a beat. Vi had just spoken a language that was unfamiliar to 

me. Nobody in my family had ever talked about cancer so openly. Cancer was 

discussed in a soft whisper and in very brief conversation. I was saddened to 

meet such a warm, gentle and bright lady who was in fact dying of breast cancer. 

I couldn’t grasp the idea of how her children would go on without her. 

Vi’s experience with breast cancer was the beginning of a journey which led me 

to where I am today. In 2000, I myself was faced with a breast cancer diagnosis. 

However, somehow I felt that I had been through this before. Suddenly it came to 

me: The gentle reminder of a woman who was ahead of her time in discussing her 

disease with such ease. Not even realizing it at the moment, I adopted her style 

and courage. I utilized my personal experience with Vi to educate myself about 

cancer. Immediately after my treatments, I became a peer mentor to other women 

who were newly diagnosed with breast cancer. I became an advocate, attended 

continuing education conferences, and worked as a psychosocial volunteer. So 

many doors have opened since my diagnosis: Education, awareness, advocacy, 

support groups and much more. Now, CBCN has given me the opportunity to 

In this issue: 

Executive Director’s Report ................4 

Defining BRCA Genes ...................6 

My Story ............................8 

View CBCN Webinars Online .............10 

What is BRCA? .......................11 

In Edmonton, How to Obtain Referral to 

the Edmonton Cancer Genetics Clinic .......12 

The Hereditary Breast and Ovarian Cancer 

Foundation Third International Symposium 

on BRCA in Montreal in October 2009 ......14 

Hormone Therapy After Risk Reducing 

Oophorectomy – Helpful or Harmful? .......15 

Knowledge is Power ...................17 

Hereditary Breast & Ovarian Cancer Society 

of Alberta 8th Annual Fall 2009 Conference ...18 

Informing Women of the Risks and Benefits 

of Genetic Testing for Hereditary Breast and 

Ovarian Cancer .......................19 

About Ovarian Cancer Canada ............21 

A Rose Grows: Fighting Cancer, Finding Me ...22 

Obituary – Marg Campbell ...............22 

BRCA1/2 Testing: 

Navigating Through the Various Reactions: 

All Parts of the Proces ..................23 

Scarred, Single and Sexy ................26 

The Psychobiological Risk and Resilience 

of Young Families Affected by Maternal 

Breast Cancer ........................28 

Top 10 Things Young Previvors (Probably) 

Don’t Want to Hear ....................30 

Familial Breast Cancer and No BRCA1/2 

Mutation? ...........................31 

Willow’s Program for Hereditary Breast 

and Ovarian Cancer ...................32 

‘E’ is for Empowered - Are You an e-patient? . .33 

CBCN: Here for You ....................34 

CBCN’s Website Friends Remembered Pages . .34 

Members, Friends, Funding Partners and 

Corporate Friends .....................35 

Canadian Breast Cancer Network Partners ....36 

2 Network News Winter/Spring 2010

e part of a remarkable Board of 

Directors, with passionate, hardworking 

Board members and 

staff. 

I know that my time with 

CBCN will be very exciting. 

This year, our work will include 

the possibility of organizing a 

second National Conference 

for Young Women Living with 

Breast Cancer, provided that we 

can raise sufficient funds. We 

will also continue to respond 

to critical issues such as the 

new recommendations from 

the United States Preventive 

Services Task Force (USPSTF), 

which advise against the use 

of mammography screening 

before age 50. The USPSTF 

also recommends against the 

practice of breast self-examination 

(BSE) as a screening tool for women of 

any age. CBCN disagrees with these 

recommendations from the USPSTF. 

We strongly support mammography 

screening in Canada, starting from 

age 40, and we urge women to 

continue practicing BSE as a way of 

familiarizing yourself with monthly 

changes in your breasts and to seek 

medical attention if you discover 

something that feels unusual. Women 

have been practicing BSE for years. 

I myself began performing BSE soon 

after my dear friend passed away in 

1982. These recommendations have 

caused quite a bit of controversy and 

will likely continue to be doubted 

and disputed by several medical and 

survivor-based communities. 

This edition of Network News revolves 

around the familial breast cancer 

susceptibility or BRCA genes. I learned 

Jackie Manthorne and incoming President Cathy Ammendolea present plaque of appreciation to past President Diana Ermel 

a great deal about BRCA genes over 

the past few years. I support the 

Hereditary Breast & Ovarian Cancer 

Foundation (HBOC Foundation) in 

my home city of Montreal. HBOC 

Foundation states that, “In some 

populations, as many as 1 in 40 women 

has certain alterations in their basic 

genetic code, commonly referred to 

as BRCA mutations. In the absence of 

risk reducing strategies, these women 

have as high as a 90 percent life time 

risk of developing breast cancer, and a 

40 percent life time risk of developing 

ovarian cancer. BRCA mutations are 

inherited, so this change in the genetic 

code may be passed from parents to 

children, putting future generations at 

risk.” 

Years have gone by since Vi 

introduced herself to me. A disease 

that was often concealed in the past is 

now being discussed more openly. I 

often wonder how much the lady with 

the bright smile and warm manner 

would appreciate the hard work of 

such a large number of individuals 

and organizations, dedicated to the 

concerns of all Canadians affected by 

breast cancer and for those at risk as 

well. 

This is to Vi for making a difference in 

my life. • 

Cathy Ammendolea is a 10-year breast 

cancer survivor who has been involved 

with several breast cancer organizations 

in addition to the Canadian Breast 

Cancer Network. She has been a volunteer 

for nine years for a local hospital 

in Montreal, working as a patient 

navigator and psychosocial volunteer 

with the Gynecological Oncology team 

at the Segal Cancer Centre at the Jewish 

General Hospital. She is also a patient 

representative on the McGill University 

Integrated Health Network (RUIS). 

Network News Winter/Spring 2010 3

Executive Director’s Report 

By Jackie Manthorne 

This special issue of Network News 

is about the BRCA 1/2 genes. 

Some articles have been written 

by doctors or researchers, others by 

women living with a BRCA diagnosis. 

Share the information in this issue with 

your friends and colleagues so that 

we can raise awareness about familial 

breast cancer. Feedback is always 

appreciated, and if you would like to 

add to the discussion, we will consider 

printing letters, personal stories and 

additional articles in future issues of 

Network News. Send your comments to 

cbcn@cbcn.ca . 

CBCN Stakeholder’s Consultation 

The Canadian Breast Cancer Network 

held its Stakeholder’s Consultation 

from October 16-17, 2009, in Ottawa, 

Ontario. Participants from across 

the country were invited, and 

nearly every province and territory 

was represented at the meeting. 

Attendees included CBCN Board 

members, the Public Health Agency 

of Canada (PHAC), representatives 

from provincial and territorial breast 

and women’s cancer networks, 

representatives from national and 

regional breast and women’s cancer 

organizations, and representatives 

from other organizations interested in 

women’s health, including the Tom 

Baker Cancer Centre; the Hereditary 

Breast and Ovarian Cancer Society of 

Alberta; Disabled Women’s Network 

Canada; the Canadian Breast Cancer 

Foundation; CancerCare Manitoba; 

the Atlantic Centre of Excellence for 

Women’s Health; Ovarian Cancer 

Canada; ReThink Breast Cancer and 

Breast Cancer Action Ottawa. 

During the consultation, the Canadian 

Breast Cancer Network priorities 

established during its 2002 Stakeholder 

Consultation were reviewed. These 

priorities were (in no particular order): 

Priority 1: A Clearinghouse 

(bilingual website) 

Priority 2: Funding 

a) Sustainability for CBCN 

b) To enhance the capacity 

of other breast cancer 

organizations 

c) Treatment-related 

expenses 

Priority 3: Young Women with Breast 

Cancer 

Priority 4: Rural Women and Men 

with Breast Cancer 

Priority 5: Building Unity and 

CBCN Image 

Priority 6: Improving 

Communications and 

Information Sharing 

Priority 7: Women and Men with 

Metastatic Breast Disease 

Priority 8: Genetic Testing 

Priority 9: Prevention & Planning 

Priority 10: Policy Development 

and Advocacy 

Regional challenges and priorities 

were considered, CBCN’s vision was 

discussed, and work was done on 

defining areas for action by CBCN in 

the next five years, which will be finetuned 

by the CBCN staff and Board. 

There was strong affirmation of the 

important leadership role that CBCN 

plays in serving as the voice of breast 

cancer survivors, and the importance 

of making that role more visible. This 

requires an emphasis on branding, 

public relations and sustainability. 

There was also recognition that at 

the national level, CBCN can best 

provide a leadership role in advocating 

for equitable policies for all women 

with cancer by partnering with other 

cancer organizations and linking with 

provincial and territorial networks. 

Photo: Brian Jackson 

Jackie Manthorne, 

Executive Director of the 


After reviewing the 10 priorities, 

participants suggested that CBCN 

concentrate on the following priorities: 

Building Unity and the Network 

Image 

• Branding and Communication 

– as the voice of survivors 

• Organizational Planning and 

Sustainability 

Policy Development and Advocacy 

• Advocacy and Capacity 

Building (for advocacy) 

• Provincial Territorial 

Partnerships 

• Partnering with Related 

Organizations 

Research and diversity are themes 

that can be linked throughout other 

priorities above and below, such as: 

Communication and Information 

Sharing 

Quality of Life and Survivorship 

Issues 

Rural and Young Women 

By the end of the weekend, the 

following consensus statement was 

developed: 

In five years, the Canadian Breast 

Cancer Network will be a financially 

stable organization that is viable, 

active and known as the voice of 

breast cancer survivors, reaching out 

to and representative of people that 

are underserved, providing leadership 

built on research, collaborating with 

others, assuming a leadership role 

in survivorship issues, educating 

and raising awareness on hereditary 


CBCN Board Members, staff and participants at the Western Regional Meeting in Calgary, November 2009 

issues, and has clarified its position 

in relation to other cancers with an 

ongoing scan of existing initiatives. 

The Board of Directors of CBCN is 

currently reviewing its 2010 priorities 

in light of the direction provided 

at the Stakeholder Consultation. 

Revised priorities will be printed in an 

upcoming Network News. 

Breast & Women’s Cancers: 

Increasing Capacity through 

Sharing Knowledge, Skills and 

Best Practices 

Breast and Women’s Cancers is a oneyear 

project of the Canadian Breast 

Cancer Network which encompasses 

two skill development Webinars on the 

determinants of health and capacity 

building and three regional meetings 

to discuss the impact of the move 

towards breast and women’s cancers. 

The objectives of this project are 

to create opportunities for breast 

and women’s cancers communities 

to increase their capacity to share 

knowledge of risk factors and 

conditions with their members 

and clients through networking, 

knowledge exchange, and education 

and skills development, to utilize 

CBCN’s commissioned research 

on partnerships and its companion 

template partnership agreement to 

increase capacity in the breast and 

women’s cancers communities and 

to create and manage partnerships 

and utilize the Model for National 

Collaboration to promote and improve 

collaboration between breast and 

women’s cancers organizations to 

increase capacity for networking and 

information and knowledge sharing. 

The project will end March 31, 2010. 

Atlantic Regional Meeting 

The Atlantic Regional Meeting was 

held in Halifax in October 2009. 

Participants from across the region 

were invited, including representatives 

from breast and women’s cancer 

networks, related organizations, and 

survivors. 18 participants attended the 

meeting, plus CBCN staff members 

and facilitators. 

During the consultation, attendees 

were updated on previous 

collaboration in the region and 

reminded of the history of the breast 

cancer networks and the move 

towards women’s cancers. Attendees 

engaged in group work to discuss 

the opportunities and challenges of 

expanding the networks to include 

gynecological cancers, regionally and 

provincially, and provincial objectives 

and timelines were defined. Attendees 

also brainstormed opportunities for 

collaboration with other provinces 

and networks, other cancers, and new 

groups. An education session was also 

held to educate participants about 

preparing research projects for ethics 

review. 

Attendees were enthusiastic about 

the opportunities for collaboration 

throughout the region, and identified 

actions and timelines for three main 

objectives: 

Speaker’s Series 

Facilitator Training Manual for 

Community Contacts 

Resources for Newly Diagnosed 

Women (gynecological cancers) 

Continued on Page 9 


Defining BRCA Genes 

By Kelly Metcalfe, RN, PhD 

In 1994 and 1995 respectively, the 

BRCA1 and BRCA2 genes were 

discovered. For women who carry 

a mutation in one of these genes, the 

risk of developing breast cancer is 

estimated to be up to 87% by the age of 

70 1 . Women with a BRCA1 or BRCA2 

mutation have one of the highest known 

risks for the development of breast 

cancer. However, with this genetic 

information, women are in a position to 

be able to reduce their breast cancer risk 

by using breast cancer risk prevention 

strategies. Therefore, the value of 

genetic testing for BRCA1 and BRCA2 

mutations is that high-risk women can 

be identified, and ultimately fewer 

women will be diagnosed with breast 

cancer and die of the disease. However, 

this is all dependent on whether or 

not a woman elects for a breast cancer 

prevention option. 

The current cancer reduction 

options available to women with 

a BRCA1 or BRCA2 mutation 

are chemoprevention (including 

Tamoxifen) 2 3 , or prophylactic surgery 

(mastectomy and oophorectomy) 4 5 . 

None of these options offer women 

a 100% breast cancer risk reduction, 

and each preventive option has 

risks and benefits, both medical and 

psychological. These circumstances 

cause the decision-making process to 

be difficult for women regarding breast 

cancer prevention. 

A prophylactic mastectomy involves 

the removal of both breasts in the 

absence of disease. The goal of 

prophylactic mastectomy is to prevent 

breast cancer, with its potential for 

metastatic spread and potential to 

cause death. Studies by Hartmann 

et al. suggested that prophylactic 

mastectomy offers a reduction in 

risk of breast cancer of 80% or more 

in women with a family history of 

breast cancer 6 , and greater than an 

89% risk reduction in women with a 

known BRCA1 or BRCA2 mutation 4 . 

Meijers-Heijboer et al. also found 

that there was a significant risk 

reduction of breast cancer associated 

with prophylactic mastectomy when 

compared to women undergoing breast 

screening 5 . Research suggests that 

satisfaction with the decision to have 

prophylactic mastectomy is high 7 8 , and 

that psychosocial functioning is not 

compromised 7 9 . 

In addition to an increased risk of 

breast cancer, women with a BRCA1 

or BRCA2 mutation also have an 

increased risk of developing ovarian 

cancer. The preventive removal 

of the ovaries and fallopian tubes 

(prophylactic oophorectomy) can 

provide significant reductions in risk 

of both breast and ovarian cancers 

in women with a BRCA1 or BRCA2 

mutation. Estimates of the effectiveness 

of prophylactic oophorectomy in 

preventing ovarian cancer have 

varied widely from 60% to 95% 10-12 . 

Prophylactic oophorectomy has also 

been shown to reduce the risk of breast 

cancer in women with a BRCA1 or 

BRCA2 mutation. The greatest risk 

reduction is observed if a woman has 

a prophylactic oophorectomy prior to 

the age of 40 (50% breast cancer risk 

reduction) 13 . After the age of 50, no 

benefit in breast cancer risk reduction 

is observed. Overall, prophylactic 

oophorectomy is effective at reducing 

the risk of both breast and ovarian 

cancers in women with a BRCA1 or 

BRCA2 mutation. However, there 

are important side-effects (eg. hot 

flashes, vaginal dryness, decreased 

libido) associated with this surgery, 

as a woman is placed into immediate 

menopause. 

Tamoxifen is a medication that is 

taken to reduce the risk of developing 

breast cancer. It is a selective estrogen 

receptor modulator (SERM) that 

competes with estrogen for binding 

to the estrogen receptor. In humans, 

Dr. Kelly Metcalfe 

Tamoxifen acts as an estrogen 

antagonist in breast tissue, inhibiting 

the growth of estrogen-dependent 

breast tumors 14 . Among high-risk 

women, a 49% risk reduction of 

invasive breast cancer risk has 

been associated with Tamoxifen 15 . 

Tamoxifen usage has been shown 

to reduce the risk of invasive breast 

cancer by 62% in healthy BRCA2 

carriers 2 . In addition, Tamoxifen 

has been shown to be effective at 

preventing contralateral breast cancer 

(breast cancer in the opposite breast) 

in both BRCA1 and BRCA2 mutation 

carriers with breast cancer 3 16 . In the 

National Surgical Adjuvant Breast and 

Bowel Project (NSABP) P-1 Study 15 , 

which examined breast cancer risk 

reduction associated with Tamoxifen 

use in high-risk women, there were 

medical side-effects associated with 

Tamoxifen including endometrial 

cancer, vascular events, and cataracts. 

Making decisions about breast cancer 

prevention are difficult for women. 

Each option that is available to them 

has benefits and risks (both medical 

and psychological). No choice will 

satisfy every one of an individual’s 

personal objectives and no alternative 

is without its risk of undesirable 

outcomes. To try to help women with 

these difficult decisions, we have 

recently developed a decision aid for 

breast cancer prevention in women 

with a BRCA1 or BRCA2 mutation. 

The decision aid was developed to 

provide decision support to women 

with a BRCA1 or BRCA2 mutation 

regarding breast cancer prevention. We 

are currently testing the decision aid 

to determine if it is helpful for women 

who have recently learned that they 


carry a BRCA mutation. If you would 

like to participate in the study, please 

contact Julie Weston at Julie.weston@ 

utoronto.ca for more information. 

Fortunately, there are breast cancer risk 

reduction options available to women 

with a BRCA1 or BRCA2 mutation. 

Women who are identified as having 

a BRCA1 or BRCA2 mutation are in a 

unique position in that they can reduce 

or eliminate their risk of developing 

breast cancer in the future. Although 

the decision about which preventive 

option to choose may be difficult for 

women, there are tools available to 

help. Ultimately, every woman with a 

BRCA1 or BRCA2 mutation can reduce 

their risk of developing breast cancer 

and feel satisfied with her decision. • 

References 

1. Ford D, Easton, D.F., Bishop, D.T., Narod, 

S.A., Goldgar, D.A. Risks of cancer 

in BRCA1 mutation carriers. Lancet 

1994;343(8899): 692-695. 

2. King MC, Wieand S, Hale K, Lee M, Walsh 

T, Owens K, et al. Tamoxifen and breast 

cancer incidence among women with 

inherited mutations in BRCA1 and BRCA2: 

National Surgical Adjuvant Breast and 

Bowel Project (NSABP-P1) Breast Cancer 

Prevention Trial. Jama 2001;286(18):2251- 

6. 

3. Narod SA, Brunet JS, Ghadirian P, Robson 

M, Heimdal K, Neuhausen SL, et al. 

Tamoxifen and risk of contralateral breast 

cancer in BRCA1 and BRCA2 mutation 

carriers: a case-control study. Hereditary 

Breast Cancer Clinical Study Group. 

Lancet 2000;356(9245):1876-81. 

4. Hartmann LC, Sellers TA, Schaid DJ, 

Frank TS, Soderberg CL, Sitta DL, et 

al. Efficacy of bilateral prophylactic 

mastectomy in BRCA1 and BRCA2 gene 

mutation carriers. J Natl Cancer Inst 

2001;93(21):1633-7. 

5. Meijers-Heijboer M, VanGeel B, VanPutten 

W, Henzen-Logmans S, Seynaeve C, 

Menke-Pluymers M, et al. Breast cancer 

after prophylactic bilateral mastectomy 

in women with a BRCA1 or BRCA2 

mutation. The New England Journal of 

Medicine 2001;345(3):158-164. 

6. Hartmann LC, Schaid DJ, Woods JE, 

Crotty TP, Myers JL, Arnold PG, et 

al. Efficacy of Bilateral Prophylactic 

Mastectomy in Women with a 

Family History of Breast Cancer. The 

New England Journal of Medicine 

1999;340(2):77-85. 

7. Metcalfe KA, Esplen MJ, Goel V, Narod S. 

Psychosocial functioning in women who 

have undergone bilateral prophylactic 

mastectomy. Psychooncology 

2004;13:14-25. 

8. Frost MH, Schaid DJ, Sellers TA, Slezak JM, 

Arnold PG, Woods JE, et al. Long-term 

satisfaction and psychological and social 

function following bilateral prophylactic 

mastectomy. Jama 2000;284(3):319-24. 

9. Hatcher MB, Fallowfield L, A’Hern 

R. The psychosocial impact of 

bilateral prophylactic mastectomy: 

prospective study using questionnaires 

and semistructured interviews. Bmj 

2001;322(7278):76. 

10. Rebbeck TR, Lynch HT, Neuhausen SL, 

Narod SA, Van’t Veer L, Garber JE, et al. 

Prophylactic oophorectomy in carriers of 

BRCA1 or BRCA2 mutations. N Engl J Med 

2002;346(21):1616-22. 

11. Olivier RI, van Beurden M, Lubsen MA, 

Rookus MA, Mooij TM, van de Vijver MJ, 

et al. Clinical outcome of prophylactic 

oophorectomy in BRCA1/BRCA2 

mutation carriers and events during 

follow-up. Br J Cancer 2004;90(8):1492-7. 

12. Rutter JL, Wacholder S, Chetrit A, Lubin F, 

Menczer J, Ebbers S, et al. Gynecologic 

surgeries and risk of ovarian cancer 

in women with BRCA1 and BRCA2 

Ashkenazi founder mutations: an Israeli 

population-based case-control study. 

J Natl Cancer Inst 2003;95(14):1072-8. 

13. Eisen A, Lubinski J, Klijn J, Moller P, 

Lynch HT, Offit K, et al. Breast cancer 

risk following bilateral oophorectomy in 

BRCA1 and BRCA2 mutation carriers: an 

international case-control study. 

J Clin Oncol 2005;23(30):7491-6. 

14. Pritchard KI. Breast cancer prevention 

with selective estrogen receptor 

modulators: a perspective. Ann N Y 

Acad Sci 2001;949:89-98. 

15. Fisher B, Costantino JP, Wickerham DL, 

Redmond CK, Kavanah M, Cronin WM, 

et al. Tamoxifen for prevention of breast 

cancer: report of the National Surgical 

Adjuvant Breast and Bowel Project P-1 

study. Journal of the National Cancer 

Insitute 1998;90(18):1371-1388. 

16. Metcalfe K, Lynch HT, Ghadirian P, 

Tung N, Olivotto I, Warner E, et al. 

Contralateral breast cancer in BRCA1 

and BRCA2 mutation carriers. J Clin 

Oncol 2004;22(12):2328-35. 

Dr. Kelly Metcalfe is an Associate 

Professor at the Faculty of Nursing, 

University of Toronto. As an Adjunct 

Scientist she is part of the team of 

investigators at the Familial Breast 

Cancer Research Unit of WCRI including 

Director, Steven Narod, and Scientist 

Joanne Kotsopoulos. Dr. Metcalfe holds 

a New Investigator Award from the 

Canadian Institutes of Health Research 

and has received the Excellence in Cancer 

Prevention and Early Detection Award 

from the Oncology Nursing Society. 

Dr. Metcalfe serves on the research 

advisory committee for the Canadian 

Association of Psychosocial Oncology. Dr. 

Metcalfe’s current research focuses on the 

prevention and treatment of hereditary 

breast cancer. She has published extensively 

on the psychosocial implications of cancer 

preventive options including prophylactic 

mastectomy and oophorectomy. She is 

currently the principal investigator on a 

study aiming to develop a decision aid for 

breast cancer prevention in BRCA1 and 

BRCA2 mutation carriers. Dr. Metcalfe is 

also the principal investigator on a study 

of Familial Cancer in Jewish Women, 

currently ongoing at the Women’s College 

Research Institute. 

Board of Directors 

Cathy Ammendolea, President, Quebec 

Alwyn Anderson, Alberta 

Nina Burford, Labrador, 

Member-at-Large 

Linda Dias, Greater Toronto Area (GTA) 

Diana Ermel, Past President, 

Saskatchewan 

Dianne Hartling, Treasurer, 

Ottawa-Gatineau 

Suzanne LeBlanc, New Brunswick 

Lorna Marshall, British Columbia 

Meeka Mearns, Nunavut 

Dianne Moore, Ontario 

Janis Murray, Secretary, 

British Columbia 

Pam Patten, Northwest Territories 

Mercedes Sellars, Newfoundland 

Pam Smith, Prince Edward Island 

Diane Spencer, Vice-President, 

Nova Scotia 

Sharon Young, Manitoba 


My Story 

By Lorna Marshall 

I 

wish there were a mandatory course 

that all physicians took to deal with 

cancer screening and to learn how to 

tell someone they have cancer. From the 

time I turned 40, every couple of years 

I would ask my GP whether or not I 

needed to have a mammogram. Every 

year it was the same response: “You 

don’t need a mammogram until you 

turn 50, especially because you have no 

history of breast cancer in your family.” 

Then, I found a lump in my breast just 

after turning 48 and I knew immediately 

that it was cancer because of its size. 

Did she help me with booking the 

mammogram after I went to her about 

the lump? No, I had to use a pay phone 

in the middle of a retail mall and make 

the phone call myself. Only after bursting 

into tears when told that it would be 

four weeks before I could get in did the 

technician feel pity for me and booked 

me within that week. The mammogram 

was followed by an ultrasound and then 

my doctor’s office called to ask me to 

come in for the results. 

“I’ve been told to tell you that you 

have cancer” are the words my doctor 

used. “Told” to tell me. How about, 

“I’m very sorry but it looks like cancer 

and we will need to do a biopsy to be 

sure.” Then when I asked if it meant I 

would need to have a mastectomy she 

responded with, “Well it depends on 

how attached you are to your breast.” 

I met with a surgeon within a week, 

had a same-day biopsy and when I 

went back to the surgeon to receive 

the results, he made a phone call and 

had me see a plastic surgeon about 

reconstruction. He wanted to schedule 

surgery in ten days and I needed to 

make a decision. At this point, I was 

walking around in a complete fog. 

After discussing this with my family 

and friends I decided that I didn’t need 

to rush this decision – after all the 

cancer didn’t grow overnight – did it? 

I requested to be referred to a specialist 

in Kelowna, one whose field was 

breast cancer. This delayed everything 

by several weeks but I was much more 

confident with this new surgeon and 

the added bonus was that I would 

be having my surgery in Kelowna 

Hospital, where the B.C. Southern 

Interior Cancer Center is located. After 

the lumpectomy, the pathology report 

came back with both good and bad 

results. My cancer was diagnosed as 

triple-negative, invasive and Grade 

III but it had not spread to the lymph 

nodes. 

Lorna and Jay Marshall 

In November 2008, I started my chemo 

cocktail. At the end of February, 

two days before my fifth chemo 

treatment, my mother who lived in 

Ontario had a stroke. She was 88, the 

primary caregiver for my father who 

has dementia and I am an only child. 

There was no question that I would 

have to fly to Ontario. We moved my 

chemo up one day and I arranged for 

a live-in caregiver for my father and 

flew there right after my session. I still 

don’t know how “Dr. M.” did it, but 

one week after arriving in Ottawa I had 

an appointment with an oncologist to 

schedule my last chemo session. What 

a different experience! In Nelson, we 

had a maximum of six people receiving 

treatment at one time and there was a 

lot of talk and laughter. Yet, here I was 

alone in Ottawa, and in a room with 

36 strangers. 

I flew from Ottawa to Kelowna to 

commence my 20 radiation treatments. 

This meant that I had to live in 

Kelowna (350 kilometres from Nelson), 

for the six weeks of my treatments. 

Fortunately for me, I had a very 

good health benefit plan through the 

company I worked with, so the costs 

associated with living there were 

covered. Without my health benefit 

plan, it would have been a large 

financial burden on my family. 

In August 2008, I was told that my 

breast cancer had returned – it was 

in my sternum. The message was 

delivered differently this time, mainly 

because it came from another doctor. 

She called me at home to tell me, but 

only after she had called my radiation 

oncologist in Kelowna to find out 

where we would go from here. She 

was able to tell me radiation was 

unlikely because that spot had been 

previously radiated. She also told me 

which blood tests she would arrange 

and she called Dr. M. to get me in as 

soon as possible for chemo. 

I had a Portacath inserted on 

September 3 rd and my first chemo was 

on September 4 th . 

I did quite a bit of research and found 

that because I had triple negative 

breast cancer there was a high 

likelihood that I had the BRAC1 or 2 

gene mutation. As this could affect 

my treatment, at the end of September 

2008 I submitted the necessary forms 

to the British Columbia Cancer Agency 

(BCCA) Hereditary Cancer Program 

to request genetic testing. I was told 

it could take up to 18 months for the 

results. I decided to pay for the genetic 

test myself (3100.00 USD) as I wanted 

to be aggressive with this cancer. I had 

the results within three weeks and 

they revealed that I had a mutation 

but it was an “unclassified” mutation. 

Meaning, the genetics experts do not 

know what it really means or how it 

could affect me. 

I didn’t want to stop the process 

through the BCCA so I met with a 

genetic counsellor from the Hereditary 

Program at the end of March 2009 and 

she approved the genetic test but said 

it would likely take twelve months for 

me to get the results. I’m still waiting. 

In January 2009, we discovered that 

after six rounds of chemo the cancer 

had progressed. As a result of my 

research, I knew that “Dr. G.” was 

conducting a clinical trial in Vancouver 

on patients who had triple negative 

cancer in addition to a BRCA1 gene 

mutation. I met with her at the end of 


January 2009 and after several scans 

(CT, PET and MRI), Dr. G said she 

would accept me into the trial. If I had 

not received my genetic test, I would 

not have been eligible for the trial. 

My CT scan this past September 

indicated that my cancer was potentially 

progressing. I convinced Dr. G. to keep 

me on the trial for another month while 

I had a PET scan to confirm the growth, 

as CT scans are not always that easy 

to read. Unfortunately, the cancer was 

growing and so I was taken out of the 

clinical trial. I started my third chemo 

cocktail on October 28 th and we are 

hopeful that this will stop the growth. 

Cancer has changed who I am. 

Previous to the diagnosis I was a 

career-driven individual who didn’t 

make enough time for my family, 

friends, or even myself. I didn’t have 

any time to give back to the community 

and now I’m proud to say I’m on the 

Board of Directors for the Canadian 

Breast Cancer Network (CBCN). 

I have told many people that cancer 

has changed my life for the better. 

They find that hard to believe until 

I explain what has happened. I now 

appreciate every single day, I’ll spend 

hours over coffee or at lunch with 

friends, just about all phone calls end 

with an “I love you,” I spend hours 

floating in the middle of the lake in my 

kayak and I’m just too busy to return 

to work. I couldn’t get through what I 

have without the unfailing support of 

my husband; he has been my pillar of 

strength. Although I know it’s a cliché, 

I can honestly say that this former 

Type A personality no longer “sweats 

the small stuff”. • 

I was born, raised and graduated from high 

school in Carleton Place, Ontario – a small 

town outside of Ottawa. After working 

several years in Ottawa, I decided to take 

a Restaurant and Hotel Management 

diploma program at Algonquin College. 

That led me to positions in Calgary and 

Ottawa working with the Four Seasons, 

Delta and Travelodge chains. 

A chance phone call from a friend of a friend 

led me to apply for a teaching position in 

the Resort and Hotel Management program 

at Selkirk College in Nelson, B.C. We have 

been in Nelson for close to twenty years and 

we love this community. 

I have volunteered with Relay for Life, am 

a breast cancer support person, and am 

on the Board of CBCN. My involvement 

with CBCN has led me to participate 

in a workshop in L.A. sponsored by the 

National Breast Cancer Coalition on breast 

cancer advocacy. I have just recently 

been hired as a novice peer reviewer 

with Systems and Research Applications 

International (SRA). SRA manages money 

set aside for breast cancer research from the 

Department of Defense in the U.S.A. 

Continued from Page 5 

Executive Director’s Report 

Participants recognized and 

appreciated the leadership role 

that CBCN provided in bringing 

together organizations throughout 

the region for the meeting, and they 

expressed hope that the collaborative 

work could continue through future 

meetings. 

Western/Northern Regional 

Meeting 

The Western/Northern Regional 

Meeting was held in early November 

2009 in Calgary. Participants from 

across the region were invited, and 

representatives from Saskatchewan, 

Alberta, British Columbia, Yukon, 

Northwest Territories and Nunavut 

attended. Participants included 

CBCN Board members, survivors, 

representatives from provincial and 

territorial breast and women’s cancer 

networks, representatives from 

regional breast and women’s cancer 

organizations, and representatives 

from other organizations interested in 

women’s health. 

One of the most exciting outcomes 

of this meeting was the formation 

of a Northern Network, consisting 

of Nunavut, Northwest Territories 

and Yukon, with the Canadian 

Breast Cancer Network as an 

additional member providing 

assistance and mentorship. There 

was also interest in creating a new 

breast cancer network in Alberta. 

The Central Regional Meeting was 

held in early March 2010, with 

representatives from Manitoba, 

Ontario and Quebec attending. 

Copies of the reports of the 

Stakeholder Consultation and the 

Breast & Women’s Cancers regional 

meetings are available in English 

and French. Contact Jenn McNeil, 

Project Coordinator, at jmcneil@ 

cbcn.ca or 1-800-685-8820 ext. 224. 

Order the Intimacy and Sexuality 

Workshop Manual and CD 

PowerPoint Presentation 

CBCN has completed its one-day 

Intimacy and Sexuality Workshop 

for young survivors, in collaboration 

with Dr. Sally Kydd, co-author of 

Intimacy after Cancer: A Woman’s 

Guide. A printed facilitator’s 

manual and a CD containing the 

PowerPoint are now available in 

English and French to organizations 

across Canada. Due to the nature 

of the material, workshops must be 

facilitated by qualified professionals. 

We are prioritizing organizations 

which intend to actively use 

the workshop with their clients. 

Workshops must be offered free 

of charge. Please send expressions 

of interest to Contact Jenn McNeil, 

Project Coordinator, at jmcneil@cbcn. 

ca or 1-800-685-8820 ext. 224. • 


View CBCN Webinars Online 

CBCN has hosted Webinars in the past couple 

of months that are currently available online. 

Healthy Lifestyle Choices for Breast Cancer 

Survivors, Part 1: Nutrition and Breast Cancer 

Exciting new research is emerging on the role of diet, 

exercise and healthy body weights in women with breast 

cancer. This informative 1-hour session provided the latest 

evidence on the role of lifestyle choices in improving your 

quality of life and reducing the risk of cancer recurrence. 

One half hour was allotted for questions at the end of 

the Webinar. The Webinar was presented by Cheri Van 

Patten, Registered Dietitian and Researcher at BC Cancer 

Agency. 

Participants learned about: 

• The latest evidence on soy 

• About the link between vitamin D and breast cancer 

• The importance of a healthy body weight 

• How much alcohol is safe to drink 

• How a low fat diet effects cancer recurrence 

• The benefits of exercise after diagnosis 

• Where to find credible sources of information and 

resources 

Healthy Lifestyle Choices for Breast Cancer 

Survivors - Part 2: 

One-hour question and answer period 

Due to the overwhelming response to the Nutrition and 

Breast Cancer Webinar, the Canadian Breast Cancer 

Network hosted a follow up question & answer Webinar, 

presented by Cheri Van Patten. 

Breast Cancer Surgery and Lymphedema: 

Are You at Risk? 

Breast cancer surgery can leave you vulnerable for 

developing lymphedema up to 30 years after treatment. 

The Webinar was presented by Judy Bedell, Breast Cancer 

Action Ottawa’s Lymphedema Educator Leader. 

Contents include: 

• The facts about lymphedema 

• How to self-monitor 

• Important lifestyle recommendations 

• When / where to go for help 

• Exercises to delay the onset of/ or to manage 

lymphedema 

• Where to get a set of Lymphedema Alert Bracelets 

Program Evaluation: Where do we start? 

The purpose of this webinar was to increase 

effectiveness in planning for and participating in 

evaluation. Program Evaluation is an organized method 

of collecting and analyzing information about program 

activities, characteristics and outcomes to measure 

program effectiveness and provide input into program 

improvement. This Webinar was facilitated by 

Patsy Beattie-Huggan, president of The Quaich in 

Charlottetown, PEI. 


• How to decide whether to evaluate or not 

• Different evaluation approaches and methods 

• How to design an evaluation 

• How to analyze the information 

• How to report the evaluation findings 

Proposal Writing 

Alanna LaPerle was the facilitator for this session; she 

is a consultant with over 20 years experience in nonprofit 

and public sector marketing, communications 

and program planning. She provides a range of services 

that include grant writing, marketing research, social 

marketing, program planning and evaluation, and 

development of marketing-communication resources. 


• How to adopt a marketing approach to grant 

writing 

• A step by step guide to putting a proposal together 

Please Note: To properly view these Webinars you will 

need to have Windows Media Player or Real Player on 

your computer as well as speakers hooked up for audio. 

To view these webinars, please go to: 

www.cbcn.ca/en/index.php?section=3&category=2219& 

regionid 

Alternatively, please go to “webinars” in the resources 

section of the CBCN website: www.cbcn.ca 

For more info on any of these Webinars, contact Jenn 

McNeil, Project Coordinator, jmcneil@cbcn.ca. • 


What is BRCA? 

By Dawna M. Gilchrist, MD, FRCPC, FCCMG, DHMSA 

What are BRCA1 and BRCA2? 

BRCA1 and BRCA2 are human genes 

that belong to a class of genes known as 

tumor suppressors. 

In normal cells, BRCA1 and BRCA2 

help ensure the stability of the cell’s 

genetic material (DNA) and help 

prevent uncontrolled cell growth. 

Mutation of these genes has been 

linked to the development of 

hereditary breast and ovarian cancer. 

The names BRCA1 and BRCA2 stand 

for breast cancer susceptibility gene 1 

and breast cancer susceptibility gene 2, 

respectively. 

In the general population, 

approximately 1 in 8 women (12%) 

will develop breast cancer and 1.5-2% 

will develop ovarian cancer in her 

lifetime. Only 5-10% of breast and 

ovarian cancer is hereditary, that is, 

due to mutations in specific cancer 

susceptibility genes. 

How do people know if they should 

consider genetic counselling for 

BRCA1 and BRCA2 mutations? 

The likelihood of a harmful mutation 

in BRCA1 or BRCA2 is increased with 

certain familial patterns of cancer. 

These patterns include the following: 

For women of Ashkenazi Jewish descent: 

• Any first-degree relative 

diagnosed with breast or ovarian 

cancer and 

• Two second-degree relatives on the 

same side of the family diagnosed 

with breast or ovarian cancer 

These family history patterns apply 

to about 2% of adult women in the 

general population. Women who have 

none of these family history patterns 

have a low probability of having a 

harmful BRCA1 or BRCA2 mutation. 

In a family with a history of breast 

and/or ovarian cancer, it may be most 

informative to first test a family member 

who has breast or ovarian cancer. If 

that person is found to have a harmful 

BRCA1 or BRCA2 mutation, then other 

family members can be tested to see if 

they also have the mutation. 

Regardless, women who have a 

relative with a harmful BRCA1 or 

BRCA2 mutation and women who 

appear to be at increased risk of breast 

and/or ovarian cancer because of their 

family history should consider genetic 

counselling to learn more about their 

potential risks and about BRCA1 and 

BRCA2 genetic tests. 

BRCA1 

Women with BRCA1 mutations have, 

by age 70, an average cumulative 

breast cancer risk of approximately 

57% (47%-66%). Approximately half 

develop breast cancer by the age of 

50. By age 70, there is an average 

cumulative ovarian cancer risk of 

approximately 40% (35%-46%), and 

this risk starts to significantly increase 

in the 30’s. 

Risk for Manifesting Breast Cancer 

per Decade: 

Age % 

20-30 3.6 

30-40 14.0 

40-50 31.0 

50-60 15.0 

60-70 7.0 

Men with BRCA1 mutations are only 

at a slightly increased lifetime risk for 

prostate cancer and breast cancer. 

BRCA2 

Dr. Dawna M. Gilchrist 

Women with BRCA2 mutations have, 

by age 70, an average cumulative 

breast cancer risk of approximately 

49% (40%-57%). Approximately one 

in three women will develop breast 

cancer by age 50. By age 70, there is an 

average cumulative ovarian cancer risk 

of approximately 18% (13%-23%), and 

this risk starts to significantly increase 

in the 40’s. 

Risk for Manifesting Breast Cancer 

per Decade: 

Age % 

20-30 0.6 

30-40 12.0 

40-50 36.0 

50-60 20.0 

60-70 36.0 

Men with BRCA2 mutations are at 

a three times increased lifetime risk 

for prostate cancer (compared to 

12% in the general population). The 

lifetime risk for male breast cancer is 

approximately 6%. 

Risk of a Second Primary 

Breast Cancer 

The risk for another primary breast 

cancer is up to five times higher with 

a BRCA1/2 mutation (as compared to 

sporadic breast cancer), with a lifetime 

risk of 40-50% by age 70. The risk for a 

second primary breast cancer may be 

reduced by previous treatment with 

Tamoxifen and/or previous treatment 

with chemotherapy that produces 

menopause. 


Other Risks 

Rare families with BRCA1/2 mutations 

may report an increased incidence of 

pancreatic cancer and melanoma. 

Inheritance 

BRCA1 or BRCA2 mutations are 

inherited in an autosomal dominant 

pattern. That is, an individual who 

carries one of these mutations has a 

50% risk of passing it on to any child, 

whether the child is male or female. 

Monitoring in Individuals with a 

BRCA1 or BRCA2 mutation 

Note: May be modified for previous 

surgery/treatment and current health 

status 

1. Monthly self-breast exam 

(including males), from age 18 

2. Twice yearly physician breast 

exam (including males), from age 

25 

3. Yearly mammogram, from age 

25-30. This can also be done on 

males with breast enlargement 

(gynecomastia). Based on the 

mammogram, the radiologist 

may recommend ultrasound 

and/or MRI to some individuals 

4. Twice yearly pelvic exam 

with CA-125 measurement 

and transvaginal ultrasound 

for females, from age 35. 

Unfortunately, this screening has 

many false positives and false 

negatives 

5. Yearly digital rectal exam and 

PSA measurement for males, 

from age 50 

6. Other screening as indicated by 

family history 

Prevention – 

Surgery and Chemoprevention 

The program is designed to offer cancer risk assessment, 

genetic counselling and, when appropriate, arrange genetic 

testing in patients at high risk for hereditary cancer (cancer 

associated with mutations in known cancer susceptibility genes). 

Contact: 

By Phone: (780) 407-7333 

By Fax: (780) 407-6845 

By Mail: Medical Genetics Clinic 

University of Alberta 

8-53 Medical Sciences Building 

Edmonton, Alberta T6G 2H7 

Consideration of preventive 

(prophylactic) bilateral total 

mastectomy, with or without 

reconstruction, may be considered 

by women with BRCA1 or BRCA2 

mutations. This reduces the risk 

of breast cancer by up to 90%. 

Prophylactic oophorectomy (removal 

of the ovaries) should be considered 

by women with BRCA1 or BRCA2 

mutations, ideally between the 

ages of 35-40, or upon completion 

of child-bearing. The risk for 

breast cancer is reduced by up to 

50% by oophorectomy in the 30’s. 

Oophorectomy, at any age, reduces 

the risk for ovarian cancer by up to 

95%. The remaining risk is for primary 

peritoneal carcinomatosis (cancer of 

the lining of the pelvic cavity). 

As most BRCA1 tumours are hormone 

receptor negative, it is unlikely that 

the prophylactic use of Tamoxifen or 

Raloxifene would be of benefit. Most 

BRCA2 tumours are estrogen receptor 

positive. Therefore, the prophylactic 

use of Tamoxifen or Raloxifene may 

be of benefit to carriers of BRCA2 

mutations, particularly if they are post- 

menopausal. This should be discussed 

with the family doctor, gynecologist or 

oncologist. • 

References 

National Comprehensive Cancer Network 

(www.nccn.org). 

Meta-Analysis of BRCA1 and BRCA2 

Penetrance. J Clin Onc 25(11): 

1329-1333, 2007. 

Dr. Dawna M. Gilchrist, M.D., FRCPC, 

FCCMG, DHMSA; has been on staff with 

the Faculty of Medicine and Dentistry at 

the University of Alberta (UofA) since 

1990. Currently, she is a Clinician- 

Teacher for UofA’s Department of Medical 

Genetics and is an Adjunct Professor for 

both the Department of Medicine and 

the Department of Pediatrics. She also 

serves as the Director for the university’s 

History of Medicine Program. Dr. 

Gilchrist first attended the University of 

Alberta, graduating in 1972 in Biology, 

and then continued there to obtain her 

BSc. Specialization in Genetics (1979) and 

M.D. (1983). Additionally, she received 

her diploma in the history of medicine from 

the Society of Apothecaries in London, UK 

(2002). Dr. Gilchrist’s areas of expertise 

include genetic disorders of adult onset; 

particularly, genetic cancer, inherited 

disorders of connective tissue and inherited 

neurodegenerative disorders. She is a 

fellow of the Canadian College of Medical 

Geneticists. 

In Edmonton, How to Obtain Referral to the 

Edmonton Cancer Genetics Clinic 

Clinic Protocol 

1. Referral (letter preferred) by specialist or primary 

care physician to the Cancer Genetics Clinic. 

2. Preliminary workup by us – pedigree construction 

and obtaining/reviewing medical records. 

3. Appointment made with patient/family. 

4. First appointment. Contents to include: assessment of 

hereditary cancer risk in patient/family; discussion of 

potential molecular testing including risks/benefits/ 

limitations; recommendations for clinical management. 

Letter sent to patient(s), referring physician, and other 

physician(s) as designated by patient. 


5. Where possible, and if patient/family interested, 

genetic testing proceeds. Except in VERY exceptional 

circumstances, this testing is possible only if there is a 

living cancer survivor in the family, and this individual 

is willing to participate. 

6. Results relayed back to patient/family in second 

appointment. Further discussion of genetic cancer 

risk in patient/family; recommendations for 

clinical management. Letter sent to patient(s), 

referring physician, and other physician(s) as 

designated by patient. 

7. If a pathogenic mutation is identified, other family 

members may request counselling/testing. 

Referral Criteria – Hereditary Breast or Breast- 

Ovarian Cancer 

1. Relatives of an individual with a confirmed 

pathogenic BRCA1 or BRCA2 mutation. 

Breast Cancer 

1. Personal history of breast cancer diagnosed before 

age 40. 


age 50, AND a first or second degree relative with 

breast cancer diagnosed before age 50. 

3. Personal history of breast cancer, AND two related 

family members with breast cancer diagnosed at 

any age, spanning two generations. 

4. Personal history of more than one primary breast 

cancer, one diagnosed before age 50. 

5. Personal history of “triple negative” tumour 

(ER-ve, PR-ve, Her2-ve), diagnosed before age 50 


1. Personal history of invasive serous ovarian cancer 

diagnosed at any age. 

2. Personal history of ovarian cancer* diagnosed before 

age 50. 

3. Personal history of ovarian cancer* diagnosed at 

any age, AND a first or second degree relative 

diagnosed with ovarian cancer* at any age. 

*ovarian cancer refers to invasive non-mucinous epithelial 

ovarian cancer, and includes primary peritoneal cancers 

and primary fallopian tube cancers. 

Breast and Ovarian Cancer 

1. Personal history of both breast and ovarian cancer* 

diagnosed at any age. 


age 50 AND a first or second degree relative with 

ovarian cancer* at any age. 

3. Personal history of male breast cancer diagnosed 

before age 65 

Ashkenazi Jewish Ancestry 

1. Personal history of breast or ovarian cancer* 

diagnosed any age (genetic testing is limited to the 

Ashkenazi mutation panel followed by a full screen 

ONLY for individuals who meet another criteria). 

2. Unaffected individuals with a first degree relative 

with breast cancer diagnosed before age 50, ovarian 

cancer* diagnosed at any age, male breast cancer 

diagnosed at any age, or multiple related relatives 

with breast and/or ovarian cancer*diagnosed at 

any age (genetic testing is limited to the Ashkenazi 

mutation panel ONLY). 

Other 

1. Families who have a significant clustering (above 

general population prevalence) of breast and/or 

ovarian cancer, but who do NOT meet above 

criteria (for assessment only). 

Referral Criteria – Hereditary Colorectal Cancer 

1. Relatives of an individual with a confirmed 

pathogenic FAP or Lynch (HNPCC) mutation 

Familial Adenomatous 

Polyposis (FAP) 

1. Firm, clinical diagnosis of FAP in patient or firstdegree 

relative 

Ashkenazi Jewish Ancestry 

1. Any individual of Ashkenazi Jewish descent with a 

personal or family history of colorectal cancer 

in a first degree relative may be tested for the APC 

mutation I1307K. 

Lynch Syndrome (formerly known as Hereditary Non- 

Polyposis Colorectal Cancer (HNPCC)** 

1. Three family members with colorectal or 

colorectal PLUS related cancer (stomach, pancreas, 

gallbladder, endometrium, ovary, kidney, ureter, 

bladder, small bowel) ie. Modified Amsterdam 

Criteria. One cancer must be diagnosed under 

the age of 50; one affected individual must be a 

first degree relative of the other two; at least two 

successive generations must be affected. 

2. Tumour IHC results suggestive of a germline 

mutation in the patient or deceased first degree 

relative. 

** Individuals meeting Bethesda criteria for possible Lynch 

Syndrome should first have MSI (microsatellite instability) 

and/or IHC (immunohistochemistry) testing on their 

tumour(s). These tests of performed by pathology. 

Referral Criteria – Other Specific Hereditary 

Cancer Syndromes 

1. Individuals/families with suspected or known 

hereditary cancer syndromes (such as Multiple 

Endocrine Neoplasia, von Hippel-Lindau 

syndrome, Li-Fraumeni, other) 


Referral Criteria – Other 

Cancer is common in the general population. Certain 

family characteristics may raise concern for hereditary 

cancer: 

1. Two or more cases of an uncommon cancer in first 

and/or second degree relatives 

2. Cancer that is diagnosed much younger than 

usual, where there is another cancer 

of the same type, at any age, in a first and/or 

second degree relative 

3. Clustering of cancer in a family, significantly 

above expected for the size of family 

Exceptions: 

a. Lung – almost always due to personal or secondhand 

smoking, or environmental exposure 

b. Cervical – almost always due to a viral infection • 

If you are uncertain about whether a patient/family may be at risk 

for hereditary cancer, please contact 780-407-7333 and speak to the 

genetic counsellor or Dr. D Gilchrist. 

The Hereditary Breast and Ovarian 

Cancer Foundation Third International 

Symposium on BRCA in Montreal in 

October 2009 

This past fall, over 400 participants 

from all corners of the globe 

gathered in Montreal for the 

Hereditary Breast and Ovarian Cancer 

Foundation (HBOC) 3rd International 

Symposium on BRCA themed 15 Years 

of Progress. Attendees participated 

in three days of lectures and 

workshops given by over 40 faculty 

from around the world. Over one 

hundred carriers and their families 

had a full day of sessions devoted 

to their needs given by international 

experts. Topics included: ways to 

modify risk; managing menopause; 

communicating genetic risk to family 

members; the psychological impact 

of living with BRCA; an update on 

breast reconstruction; and practicing mindfulness. Clinicians, 

researchers and genetic counsellors were updated on the 

role of PARP inhibitors in treating genetically linked breast 

and ovarian cancers; new breast cancer genes CHEK2 and 

PALB2; new prevention and screening strategies; and how to 

classify patients with newly discovered BRCA1 and BRCA2 

gene mutations. Over 90 new research studies were also 

presented. Planning is underway for the next meeting in 

October 2011. To review full information on the conference, 

please go to www.odon.ca/brca . 

In some Canadian populations, as many as 1 in 40 women 

have certain alterations in their basic genetic code, 

commonly referred to as BRCA mutations. In the absence 

of risk-reducing strategies, these women have as high as a 

90 percent lifetime risk of developing breast cancer, and a 

40 percent lifetime risk of developing ovarian cancer. BRCA 

mutations are inherited, so this change in the genetic code 

may be passed from parents to children, putting future 

generations at risk. 

The Hereditary Breast and Ovarian Cancer Foundation 

(www.hboc.ca) is a community-oriented volunteer driven 

Canadian charity with a tripartite mission: Awareness, 

Action, and Research. 

Awareness: HBOC encourages families and their 

healthcare providers to become aware of their medical and 

disease histories and provides the resources to assess for 

hereditary breast and ovarian cancer risk. 

Action: HBOC provides women and their families, who are 

found to be at risk for hereditary breast and ovarian cancer, 

the information and the professional support they need to 

cope with and act on their state. 

Research: HBOC supports research that evaluates the 

outcomes of women with proven genetic risk of breast 

and ovarian cancer, as well as evaluation of different riskreducing 

modalities. HBOC equally encourages basic 

science research related to the genetics of breast and ovarian 

cancer. 

The Hereditary Breast and Ovarian Cancer Foundation 

seeks to fulfill its mission by working in cooperation with 

university or hospital-based programs in cancer genetics. • 

For more information, please call 1-514-482-8174, e-mail 

info@hboc.ca or visit their website at www.hboc.ca . 

Mailing address: 

Hereditary Breast and Ovarian Cancer Foundation 

PO Box 434, Snowdon 

Montreal, Quebec, H3X 3T7 


Hormone Therapy After Risk 

Reducing Oophorectomy – 

Helpful or Harmful? 

By Jodi Wilkie, B.Sc. Pharm. 

Menopausal symptoms 

and long-term 

health effects after 

oopherectomy 

In women with BRCA mutations, 

lifetime risk of breast and 

ovarian cancer is decreased with 

the removal of both ovaries and 

fallopian tubes. This surgery, known 

as risk-reducing Bilateral Salpingo- 

Oophorectomy (rrBSO), can lower 

lifetime breast cancer risk by about 

50%. Ovarian cancer risk may be 

reduced by as much as 80-95%. For 

maximum benefit, experts recommend 

that ovaries are removed after a 

woman has completed childbearing 

or by age 35. The benefit of rrBSO 

diminishes as age increases. 

Throughout a woman’s reproductive 

years, the ovaries make varying 

amounts of estrogen, progesterone 

and testosterone. Within days of 

rrBSO, levels of these hormones 

drop rapidly, throwing a woman 

into full-blown menopause. This 

sudden change in hormone levels can 

bring on a wide array of bothersome 

symptoms, including hot flashes, night 

sweats, sleep disturbances, mood 

symptoms, vaginal dryness and sexual 

dysfunction. Menopausal symptoms 

may be more frequent and/or severe 

initially compared to those experienced 

with a natural menopause. 

Loss of body estrogen before age 40 or 

45 may also impact long-term health. 

Estrogen helps to keep the heart and 

blood vessels healthy and maintains 

bone density. Early menopause is 

linked to an increased risk of heart 

disease and osteoporosis. 

Hormone Therapy basics 

Hormone Therapy (HT) replaces some 

of the hormones that the ovaries made 

before surgery. HT with estrogen 

(with or without progesterone) is the 

most effective remedy for moderate 

to severe menopausal symptoms. An 

analysis of 21 studies concluded that 

HT reduces hot flash frequency by 

77% and severity by 87% compared to 

placebo. 1 Nothing else works this well. 

HT can also help other menopausal 

symptoms. It improves sleep, which 

means less fatigue and irritability and 

fewer mood swings. Estrogen is a very 

effective treatment for symptoms of 

vaginal dryness. Women using HT 

may even feel an improved sense of 

well-being. 

The uterus may or may not be 

removed when the ovaries are 

removed. Removal of the uterus is 

called a hysterectomy. If a woman’s 

uterus is in place, she needs estrogen 

AND progesterone. If a woman’s 

uterus is removed, it is safe for her to 

use estrogen without progesterone. 

Use of estrogen alone by a woman 

who has a uterus may increase risk 

of cancer developing in the uterus. 

Progesterone lowers this risk. 

Hormone Therapy after rrBSO 

A woman must balance the potential 

survival benefit of rrBSO with the 

quality of life and long-term health 

effects of early menopause. The safety 

of HT after rrBSO is controversial. 

Estrogen may affect the risk of 

breast cancer in women with BRCA 

mutations. The worry is that HT may 

increase breast cancer risk or reverse 

the benefit gained with rrBSO. 

Jodi Wilkie 

Estrogen exposure is a recognized risk 

factor for breast cancer. Breast cancer 

risk increases slightly after four to 

five years of postmenopausal HT with 

estrogen and progesterone. There is 

less of an increase in breast cancer risk 

with use of estrogen alone. If a woman 

plans to use HT for symptomatic and 

health benefits after oophorectomy, 

removal of the uterus as well allows 

for use of estrogen alone. 

What the studies tell us 

The good news is that no studies 

have demonstrated an increased risk 

of breast cancer with HT after rrBSO. 

Unfortunately, few studies have been 

done, so data is limited. 

The Prevention and Observation of 

Surgical Endpoints (PROSE) study 

followed 462 BRCA 1 or 2 mutation 

carriers for 3.6 years. 2 155 of these 

women had rrBSO and following 

surgery 60% used HT. Seven percent of 

women who did not have rrBSO also 

used HT. The researchers found that 

breast cancer reduction was similar in 

women with BSO who did OR did not 

use HT. The conclusion reached in this 

study was that short-term HT does not 

negate the benefit of rrBSO on breast 

cancer risk reduction. In other words, 

short-term HT used to manage the 

immediate menopausal symptoms that 

occur after surgery may not increase 

the risk of breast cancer. 


A more recent case-control study 

looked at 472 postmenopausal BRCA1 

mutation carriers. 3 Women who 

developed breast cancer (cases) were 

compared with women who didn’t 

(controls) and researchers tried to 

determine whether prior HT use had 

influenced cancer risk. They found 

that use of HT was not a risk factor 

for developing breast cancer. In fact, 

women who used estrogen alone had 

a lower risk of breast cancer compared 

to women who did not use estrogen 

at all. It is not known whether results 

from this study also apply to BRCA2 

mutation carriers. BRCA1 cancers are 

commonly negative for estrogen and 

progesterone receptors, so they may be 

affected less by hormones. 

A model was designed to calculate 

life expectancy gains after rrBSO 

in BRCA 1 or 2 mutation carriers 

between 30 and 40 years of age. 4 

Data used to calculate risk of breast 

cancer associated with HT was from a 

general population of postmenopausal 

women, not BRCA mutation carriers 

or women who had undergone rrBSO. 

The analysis found that HT did not 

change life expectancy gains of rrBSO 

if women stopped taking the hormones 

by age 50. In this model, the gain in life 

expectancy with rrBSO ranged from 

3.34 to 4.65 years, depending on age 

at oophorectomy. The change in life 

expectancy with HT ranged from +0.17 

years to -0.34 years when HT was 

stopped at age 50. 

Bioidentical Hormone Therapy 

There are many HT products available 

in Canada. Hormone therapy must 

be individualized based on the effect 

it has on symptoms and any adverse 

effects that occur. Different products 

can have different effects and what 

works well for one woman doesn’t 

necessarily work as well for another. 

Many women have heard about 

“Bioidentical Hormone Therapy” 

(BHT). It may be promoted as a 

safer, more natural type of HT. 

The term “bioidentical” refers to a 

hormone that has the same chemical 

structure as one produced by the 

body. Examples include estradiol, 

estrone, estriol, progesterone and 

testosterone. Bioidentical hormones 

are commercially available in several 

well-tested Health Canada approved 

prescription products. BHT may also 

refer to custom compounded HT 

preparations that are mixed up at a 

compounding pharmacy. All BHT 

products, whether commercially 

manufactured or custom compounded, 

may help symptoms of surgical 

menopause. There is still no strong 

evidence that one type or brand of 

estrogen is safer than the others when 

it comes to breast cancer risk. 

Vaginal estrogen and testosterone 

Women with symptoms of vaginal 

dryness may use a vaginal estrogen 

product. Absorption into the body 

is minimal at recommended doses. 

Vaginal estrogen may be used along 

with systemic HT if necessary. 

Women may be interested in using 

testosterone for low sexual desire. 

Whether testosterone should be 

replaced after rrBSO is controversial. 

Many things affect sexual function 

in women, including relationship 

factors, stress, fatigue and overall 

health. Estrogen therapy may improve 

sexual desire and response by 

improving blood flow to the vagina 

and increasing lubrication. There 

are no commercially manufactured 

testosterone products available in 

Canada for women due to lack of longterm 

safety and efficacy data. Effect of 

testosterone on breast cancer risk is not 

known. 

An individual decision 

Many aspects of the effects of HT on 

breast cancer risk in BRCA mutation 

carriers are unknown. Caution is still 

advised. If HT is “bioidentical,” this 

does not guarantee that it is a safer HT 

without risks. Women should decide 

about short-term HT based on quality 

of life issues and consider stopping 

HT around the time when natural 

menopause would have occurred. 

Most importantly, the decision 

whether or not to use HT following 

rrBSO is an individual one. • 

References 

1. MacLennan et al. Cochrane Database 

Syst Rev. 2004;18(4) 

2. Rebbeck et al. J Clin Oncol. Nov 

2005;23(31):7804-10 

3. Eisen et al. J Natl Cancer Inst. Oct 

2008;100(19):1361-7 

4. Armstrong et al. J Clin Oncol. Mar 

2004;22(6):1045-54 

Jodi Wilkie, B.Sc.Pharm., is a pharmacist 

and North American Menopause Society 

credentialed Menopause Practitioner. 

She obtained her Bachelor of Science 

in Pharmacy with distinction from the 

University of Alberta and worked for 

many years as a community pharmacist 

with Safeway Pharmacy. This is where 

she developed an interest in women’s 

health and pursued this as a specialty. Jodi 

currently works in outpatient Women’s 

Health clinics, including Menopause and 

Obstetric Medicine clinics, at the Grey 

Nuns and Royal Alexandra hospitals in 

Edmonton. 

Subscribe to our 

e-letter, Outreach! 

Outreach is the Canadian 

Breast Cancer Network’s free 

e-letter, which contains action 

alerts, info about our activities, 

programs and projects. You can 

find out about opportunities to 

join panels, do surveys, order 

reports, and much more! It is 

only available by e-mail. To 

subscribe, send an e-mail to 

cbcn@cbcn.ca or call Maureen 

at 1-800-685-8820 to sign up. 


Knowledge is Power 

Interview with Jane Jankovic 

By Ovarian Cancer Canada 

Jane Jankovic “couldn’t roll up 

her sleeve fast enough” to get 

a blood test that would tell her 

if she was genetically predisposed 

to ovarian cancer – the disease that 

claimed the lives of her mother and 

grandmother. 

Yet once she learned – on 9/11 – that 

she carries a genetic mutation of the 

BRCA1 gene, it took the television 

producer two years to decide on a 

prophylactic oophorectomy – surgical 

removal of the ovaries and fallopian 

tubes in a bid to prevent ovarian 

cancer. 

Despite the fact that her lifetime risk of 

developing the disease was as high as 

40% and she was also at high risk for 

developing breast cancer, it took time 

for her to decide on a course of action. 

“I was playing the odds,” says Jane. 

Part of the delay involved coming to 

terms with not having children. She 

also didn’t want to be thrown into 

menopause at age 41. 

When she did opt for surgery, what 

she considered a tactical preventive 

move may have actually saved her life. 

After several analyses of her tissue, 

pathologists found Stage II serous 

ovarian cancer. 

“I didn’t feel anger. I didn’t feel scared. 

I felt relief,” recalls Jane. “I had lived 

with the threat of cancer for so many 

years that being able to focus on the 

enemy seemed simpler than living in 

fear of an ambush. Now that I knew I 

had it, I could focus. 

“In ovarian cancer, the cancer’s biggest 

advantage is that you don’t know it’s 

there until it’s too late. I was Stage 

II. And I knew it was there. The 

advantage was mine.” 

Within a week, Jane began 

chemotherapy followed by radiation 

therapy that was part of a clinical trial. 

That was in 2004 and Jane has been 

well ever since. She continues to be 

monitored for recurrence and screened 

for breast cancer. 

Jane Jankovic 

Women who are diagnosed with 

early-stage ovarian cancer and treated 

have survival rates as high as 80% to 

90%. Unfortunately, due to a lack of 

a screening test for the disease, most 

women are diagnosed in the late 

stages when survival rates can be as 

low as 20%. 

Jane is grateful for genetic counselling 

and testing – something that was not 

available when her grandmother and 

mother were alive. The BRCA1 and 

BRCA2 genes were identified in the 

mid-1990s after both of these women 

had died. When genetic counselling 

and testing were available in the new 

millennium, Jane took advantage of 

these advances. 

“I didn’t have to think about doing the 

test at all,” she says. “I was not one 

of those people who was squeamish 

about knowing. I wanted to know so I 

could then make an informed decision 

about what I could potentially do to 

improve my chances of not getting 

ovarian cancer. For me, it was all winwin 

to know.” 

While she appreciates the fact that 

testing may not be for everybody, 

Jane is a person who “wants all of 

the information all of the time. I 

think it’s one thing to be afraid of 

having a genetic predisposition if 

there’s nothing you can do with 

that knowledge. But being tested for 

BRCA1 or 2 does give you an option to 

be preventative as much as possible.” 

Jane recently celebrated her 50 th 

birthday and over the years she has 

learned hard lessons about life and 

death, especially that “there are no 

guarantees.” 

Not only has she lost her mother and 

grandmother to ovarian cancer, but 

her father died of a heart attack weeks 

after receiving a clean bill of health 

from his cardiologist. “And my sister 

went to emergency with chest pains 

and was diagnosed with flu. She died 

from heart failure the next day.” 

Despite these experiences, Jane 

remains grateful for the advances that 

have allowed her to make decisions 

that keep her healthy and active. She 

encourages those who are eligible for 

genetic counselling to take advantage 

of it so they can decide whether or not 

to be tested. 

“This experience taught me that I can’t 

control everything that happens to 

me but I can control my response,” 

says Jane. “I think cancer patients 

can sometimes describe themselves 

as powerless and vulnerable. I would 

flip that around and say, it’s taught 

me that I have a lot more power than I 

thought I had.” • 

Jane Jankovic has been a producer 

with TVO for 15 years. A survivor of 

hereditary ovarian cancer, she volunteers 

with Ovarian Cancer Canada as a public 

speaker and media spokesperson. 


Hereditary Breast & Ovarian 

Cancer Society of Alberta 

8th Annual Fall 2009 Conference 

The Hereditary Breast & Ovarian Cancer Society 

of Alberta (HBOC Society of Alberta) hosted its 

eighth annual conference on November 7, 2009. 

While the majority of breast 

and ovarian cancers occur by 

chance, about 5-10% of the 

cases are hereditary. Many hereditary 

breast and ovarian cancers are 

associated with mutations on two 

genes, known as BRCA1 or BRCA2. If 

an individual has a mutation in either 

gene, each of his or her children 

has a 50% chance of inheriting the 

mutation. Genetic tests are available 

for mutations in these genes. The 

HBOC Society of Alberta believes that 

individuals and families impacted by 

hereditary breast and ovarian cancers 

should have timely access to quality 

health information and services. 

HBOC Society of Alberta’s goal is to 

advance the education of the public 

concerning hereditary breast and 

ovarian cancers and provide support to 

those individuals and families affected 

by offering information, advice and 

peer support. 

Here are the highlights of the 

conference presentations by experts, 

breast cancer survivors and others. 

Introduction: 

Lianne Hanson – Survivor and 

HBOC Society of Alberta Member 

Personal Reflection 

• A moving video was shared about 

Lianne’s long emotional struggle 

through breast cancer, genetic 

testing and subsequent surgeries as 

a young mother 

• Lianne has shared her journey 

with the public through a series of 

articles in the Edmonton Journal 

Keynote Speaker: 

Dr. Mary Jane Esplen, PhD, RN 

Living with High Risk for Cancer – 

Key Issues and How to Deal with Them 

• Themes included risks and issues 

associated with hereditary breast 

and ovarian families, and the pros 

and cons of genetic testing 

• Dr. Esplen is a Clinician Scientist 

and Professor at the University 

of Toronto, specializing in 

Psychosocial Oncology 

Panel Discussion: 

HBOC Society Members 

Trends in Reconstructive Breast Surgery 

• Four women with different 

kinds of reconstructive surgeries 

participated 

• Questions were addressed about 

recovery time, pain, satisfaction 

with results, and effect of surgery 

on spouses and other family 

members 

High Risk Clinics in Alberta: 

Dr. Barbara Krause, MD, FRCPC & 

Kim Baikie, RN, Nurse Navigator 

Updates on the Edmonton and Calgary 

High Risk Clinics 

• Dr. Krause provided updates on 

the Edmonton High Risk Clinic, 

which is also run by Dr. Kelly 

Dabbs, MD. This clinic operates on 

a referral basis, supporting patients 

with information on options as well 

as MRI access at the Cross Cancer 

Institute 

• Baikie updates on the Calgary 

High Risk Clinic, where she and 

oncologist Dr. Sasha Lupichuk 

and psychologist Dr. Tara Power 

work as a team to find the best 

personalized options for each high 

risk individual. This clinic also 

operates on a referral basis 

The conference also featured 

concurrent sessions on a variety of 

topics. 

Session: Jodi Wilkie, B.Sc. Pharm 

Hormone Use after Prophylactic 

Oopherectomy 

• Topics consisted of the benefits 

and risks of Hormone Replacement 

Therapy (HRT) after prophylactic 

oophorectomy, how long HRT 

should be used and alternative 

therapies 

• Wilkie is a pharmacist and 

menopause practitioner 

Session: Lois Bailey, Pilates Instructor 

Post Surgical Pilates 

• Principles of Pilates were explained, 

including the history and beliefs of 

the discipline and how mental and 

physical health are interrelated 

• Bailey is an internationally-trained 

instructor with a focus on post 

surgical Pilates 



Informing Women of the Risks and Benefits 

of Genetic Testing for Hereditary Breast and 


Interview with Susan Armel, MS, CGC Genetic Counsellor; 

Rochelle Demsky, MS, CGC Genetic Counsellor; Fran Turner 

Submitted by Ovarian Cancer Canada 

Genetic counsellors Susan Armel 

and Rochelle Demsky worry 

most about the patients they 

don’t get to see. 

They spend 

their days at 

the Familial 

Breast and 

Ovarian 

Cancer Clinic 

of Toronto’s 

Princess 

Margaret 

Hospital 

focused on a 

steady stream 

of patients who 

come to them 

for information 

and guidance 

about genetic 

testing related 

to inherited 

forms of 

breast and 


But they are 

concerned about the many patients at 

increased risk for inherited disease who 

are missing the opportunity to learn 

about genetic testing. 

Some patients shy away from genetic 

counselling because they believe that 

it means they must agree to genetic 

testing.“ That’s a big misconception,” 

says Armel. “People need to know 

that there is value in having the 

information and then using it to make 

an informed decision about testing.” 

Approximately 10% of ovarian 

cancers and 5% of breast cancers 

are hereditary, meaning that a 

predisposition to developing breast, 

Fran Turner, National Program Director, Ovarian 

Cancer Canada 

ovarian and other related cancers is 

being passed through the generations 

of the family. Most hereditary breast 

and ovarian cancers are due to 

mutations or 

changes in 

the BRCA1 or 

BRCA2 genes. 

These gene 

mutations can 

also increase 

prostate cancer 

among men. 

Both females 

and males have 

the BRCA1 and 

BRCA2 genes 

and a mutation 

can be inherited 

from a person’s 

mother or father. 

Some people 

who are eligible 

for genetic 

counselling 

miss the 

opportunity to 

consider testing because they are 

not being referred. “You have to be 

your own advocate and speak with 

your physician,” adds Demsky. 

“Anyone who is eligible for genetic 

testing should be referred for genetic 

counselling.” 

Most eligibility criteria for counselling 

and testing – whether for people already 

diagnosed with ovarian or breast 

cancer or for those without a personal 

diagnosis – involves having a family 

history of one or both of the diseases. 

Although the specific criteria may differ 

across the provinces and territories, 

genetic counselling and testing for 

gene mutations that increase the risk of 

inherited ovarian and breast cancer are 

available throughout the country. 

For example, Demsky states that women 

with invasive serous ovarian cancer 

or a diagnosis of breast cancer under 

age 35 are eligible for governmentfunded 

testing in Ontario and should 

be referred for genetic counselling. “In 

these cases, they don’t need to have a 

family history of the disease aside from 

their own personal diagnosis.” 

Fran Turner, National Director of 

Programs for Ovarian Cancer Canada, 

provides information and support 

to women diagnosed with ovarian 

cancer. She encourages those who have 

a family history of ovarian, breast or 

related cancers to find out if they are 

eligible for genetic counselling and 

testing. “If you have a family history, 

you should bring this to the attention 

of your doctor. Genetic counselling 

is an important next step to help you 

understand the risks and benefits 

of genetic testing. Testing involves 

dealing with complex information, 

emotions and family relationships, so 

having the guidance and expertise of a 

genetic counsellor is critical.” 

According to Demsky, “The important 

thing is for the patient to really 

understand what genetic testing is all 

about – that it’s not just a blood test 

but it has implications for the person 

and their family in terms of their own 

risks of getting cancer and the options 

available to them.” 

• Women who test positive for the 

BRCA1 mutation have a 50-85% 

lifetime chance of getting breast 

cancer and a 20-40% lifetime risk of 

ovarian cancer 


• Women who test positive for 

the BRCA2 mutation also have a 

50-85% lifetime chance of getting 

breast cancer and a 10-20% lifetime 

risk of ovarian cancer 

• Those with the BRCA1 or BRCA2 

mutation have a 50% chance of 

passing the mutation on to each of 

their children 

• Both men and women 

can have a BRCA1 or 

BRCA2 mutation, and 

these mutations can be 

inherited from one’s 

mother or father 

• BRCA1 and BRCA2 

mutations also 

increase prostate 

cancer risks among 

men, and in particular 

mutations in the 

BRCA2 gene also 

increase the risks for 

pancreatic cancer, 

melanoma, and male 

breast cancer 

• BRCA mutations occur 

in individuals of all 

ethnic backgrounds, 

but are more common 

in certain populations. About 1 in 

50 Ashkenazi Jews has a BRCA1 

or BRCA2 mutation that increases 

the risks for breast, ovarian and 

related cancers. French Canadians 

of certain ancestry may be at 

increased risk. There are common 

BRCA mutations in the Icelandic 

and Dutch populations 

• Although they are at increased risk, 

not all people with BRCA1 or BRCA2 

mutations will develop cancer 

According to the genetic counsellors, 

people are often unaware that women 

with inherited ovarian cancer are at 

increased risk for breast cancer while 

those with inherited breast cancer are 

at higher risk for ovarian cancer. 

While the statistics can be daunting, 

Armel believes that genetic counsellors 

can be of great assistance as “tour guides 

that lead people down a path and help 

them decide what is right for them.” 

There is an education component, which 

involves helping the patient understand 

genetic testing and reaching a decision 

about whether or not to be tested. 

Genetic counselling can also encompass 

trying to sort out inconclusive test 

results, or helping a person come to 

terms with a positive result and then 

developing a plan of action. 

What can a woman do if she tests 

positive for a BRCA mutation and is at 

increased risk of developing cancer? 

Susan Armel (Left) and Rochelle Demsky (Right) 

For ovarian cancer: Regular 

monitoring (pelvic or transvaginal 

ultrasound and a CA125 blood test); 

oral contraceptives (birth control pill); 

prophylactic oophorectomy (surgical 

removal of ovaries and fallopian 

tubes); and hysterectomy (removal of 

the uterus). 

For breast cancer: Screening (breast 

self-exams, clinical breast exams, 

mammograms and MRIs); medications 

such as Tamoxifen; prophylactic 

oophorectomy (surgical removal 

of ovaries and fallopian tubes); or 

prophylactic mastectomy (surgical 

removal of the breasts). 

Genetic counselling and testing are 

concentrated in major Canadian centres. 

Some provinces and territories access 

these services through other provinces. 

Patients from smaller communities 

and rural or remote regions may avoid 

significant travel by accessing genetic 

counsellors via Telehealth Ontario. If a 

person decides to proceed with testing 

after counselling, a blood sample can be 

taken by local health professionals and 

sent in for analysis. 

Some of the newer trends in genetic 

counselling involve group sessions for 

the teaching component, followed by 

individual sessions with each patient. 

Depending on the patient’s wishes, 

some centres will provide test results 

by phone, followed by 

an in-person meeting 

with their counsellor to 

explore options. 

Armel and Demsky 

can envision the day 

when genetic testing 

is routinely used to 

help determine a 

course of treatment for 

those diagnosed with 

hereditary breast or 


In the meantime, 

while acknowledging 

the challenges of the 

job, they say genetic 

counselling offers 

many rewards. Says 

Armel: “Although testing isn’t right for 

everybody, we feel that we are helping 

prevent cancer and I think our patients 

see it that way too.” 

For more information, please visit: 

Hereditary Breast and Ovarian 

Cancer Foundation 

www.hboc.ca 

Hereditary Breast and Ovarian 

Cancer Society 

www.hbocsociety.org 

FORCE: Facing Our Risk of Cancer 

Empowered 

www.facingourrisk.org 

Willow Breast Cancer Support 

Canada 

Visit www.willow.org or call 

1-888-778-3100 

To find a genetic counsellor, contact 

your family physician as a first point 

of reference; also refer to the Canadian 

Association of Genetic Counsellors at 

www.cagc-accg.ca . • 


Susan Armel is the senior genetic 

counsellor at the Familial Breast and 

Ovarian Cancer Clinic at Princess 

Margaret Hospital. Since 1999, she 

has specialized in providing genetic 

counselling services to families with 

strong histories of breast and ovarian 

cancer. Armel is also a Lecturer in the 

MSc. Genetic Counselling Program at the 

University of Toronto and is involved in 

research in the area of hereditary breast 

and ovarian cancer. 

Rochelle Demsky is a genetic counsellor at 

the Familial Breast and Ovarian Cancer 

Clinic at Princess Margaret Hospital. 

She has been working in cancer genetics 

since 1999, both in New York City and in 

Toronto. Demsky is a clinical instructor 

in the MSc Genetic Counselling Program 

at the University of Toronto and is 

also involved in research in the area of 

hereditary breast and ovarian cancer. 

Fran Turner, National Program 

Director for Ovarian Cancer Canada, is 

responsible for the ongoing development 

and implementation of programs to meet 

the needs and expectations of a broad 

range of stakeholder groups nationwide. 

She demonstrates a deep understanding 

of community needs and enjoys creating 

innovative ways to continue to spread 

awareness about ovarian cancer. 

About Ovarian Cancer Canada 

Ovarian Cancer Canada is the country’s only national charity dedicated to 

overcoming ovarian cancer. Ovarian Cancer Canada focuses its efforts on 

funding research in early detection, improved treatments and, ultimately, 

a cure for the disease. The organization invests in education, awareness and 

support programs for women living with the ovarian cancer and their families. 

Ovarian cancer is Canada’s most fatal gynecologic cancer. It will strike 

approximately 1 in 70 women in their lifetimes. There is no reliable early 

detection test, nor are the disease’s symptoms easy to recognize. As a result, most 

women are diagnosed in the later stages when five-year survival rates can be as 

low as 20%. When diagnosed and treated early, up to 90% of women diagnosed 

with ovarian cancer survive. 

It is important to be familiar with the symptoms of the disease. If you have one or 

more of these symptoms that persist for 3 weeks or longer, see your health care 

practitioner. The most common symptoms are as follows: 

• Swelling or bloating of the abdomen 

• Pelvic discomfort or heaviness 

• Back or abdominal pain 

• Fatigue 

Upcoming Events 

• Gas, nausea, indigestion 

• Change in bowel habits 

• Emptying your bladder frequently 

• Menstrual irregularities 

• Weight loss or weight gain 


Hereditary Breast & Ovarian Cancer 

Society of Alberta 8th Annual Fall 2009 

Conference 

Session: 

Dr. Michelle Philips MS, 

Rac., DTCM 

Complementary Medicines 

• Dr. Philips provided 

information on Traditional 

Chinese Medicine (TCM) 

related to oncology and quality 

of life management 

• Dr. Phillips has worked for 

many years as a genetic 

counsellor with people at risk 

for and affected by hereditary 

cancer. Her focus continues to 

be cancer-related, including 

the use of TCM to complement 

traditional western treatments 

Conclusion: Wendy Edey, 

Hope Foundation of Alberta 

Message of Hope 

• A down-to-earth message of 

hope in the light of hereditary 

breast and ovarian cancers 

closed the conference 

• Edey is Director of Counselling 

at Hope Foundation of Alberta 

Planning is underway for the 9 th 

Annual Conference to be held on 

November 7 th , 2010 in Edmonton. • 

For more information, please call 

1-866-786-HBOC(4262), e-mail 

hbocsociety@telus.net or visit 

http://www.hbocsociety.org/. 

• Ovarian Cancer Canada is proud to be partnering with the Bay’s designer destination, The Room for the Celebrate Women 

event on March 23, 2010. The event will feature a champagne reception, luncheon and fashion show hosted by Fashion 

Television’s Jeanne Beker. All proceeds raised from the event will go towards funding Ovarian Cancer Canada’s support, 

awareness and research programs. For more information or to purchase tickets please visit the Ovarian Cancer Canada 

website at www.ovariancanada.org . 

• To learn about upcoming regional and national events visit the News and Events section of our website. 

• On Sunday, September 12, 2010, join Canadians in cities and towns across the country for the Winners Walk of Hope in 

support of Ovarian Cancer Canada. For details, visit www.winnerswalkofhope.ca . • 


A Rose Grows: Fighting 

Cancer, Finding Me 

The inspirational story of Olga Stefaniuk, a 

cancer survivor of 23 years 

First diagnosed 

with breast 

cancer 

in 1986 at the 

age of 42, Olga, 

from Saskatoon, 

Saskatchewan, 

decided to use her 

life for a greater 

purpose. She 

attended retreats 

and workshops, 

learning all she could 

about the disease 

and how to cope. 

She then brought 

that information back 

to Saskatchewan, 

initiating retreats, 

workshops and 

support groups for 

others facing cancer. 23 years and two recurrences later, Olga 

continues to spread a message of hope to patients, caregivers 

and the medical community. 

A Rose Grows: 

Fighting Cancer, 

Finding Me is Olga’s 

first book. It details 

the true story of her 

more than 23-year 

battle with cancer 

and the message she 

spreads about facing 

life’s challenges: with 

hope, anything is 

possible. This 215- Ogla Stefaniuk 

page autobiography 

heralds Olga’s resilience and positivity and at the same 

time reminding us all what power we hold within. 

For $16.95, A Rose Grows: Fighting Cancer, Finding Me is 

available in Saskatoon at: 

• McNally Robinson Booksellers (Saskatoon 

branch) 

• HOPE Cancer Help Centre Inc. 

• Pink Tree, The Fitting Shop 

• The Saskatoon Cancer Centre 

• Niki’s Jewelry Design (www. 

nikisjewelrydesign.com) 

Also available directly from the author by calling 

(306) 374-1146. 

Obituary 

Marg Campbell 

The Canadian Breast Cancer Network mourns the 

loss of Marg Campbell, who died surrounded 

by family and friends on January 8, 2010. Marg 

was a kind, gentle woman who lived with breast 

cancer for 14 years. Marg is survived by her husband 

Arch, her children Peter, Sara and Paul, her two 

grandchildren and many other relatives and friends. 

After a long career at the Library of Parliament, Marg 

was able to devote herself to her love of learning and 

literature, travel, family and friends. 

Marg became a volunteer at CBCN’s national office after she was diagnosed 

with metastatic breast cancer. She helped with reception several afternoons 

a week, talking on the phone with other women who had breast cancer, and 

once she became too ill to come to the office, she helped update our website 

from home. She was an intelligent, kind and gentle woman, and we will miss 

her presence in our lives. 


BRCA1/2 Testing: 

Navigating Through the Various 

Reactions: All Parts of the Process 

By Mary Jane Esplen, PhD, RN 

The cloning of cancer genes 

and the offering of genetic 

testing offers a clearer sense of 

understanding why cancer developed 

for some, while for others it helps to 

gain certainty around an increased 

risk that can move a person forward 

in considering the various risk 

management options. Genetic testing 

can provide a sense of hope that 

a person may be able to prevent a 

specific cancer from occurring, or at 

the very least allow for early detection. 

At the same time, regardless of how 

open or how clear the individual is 

around the reasons for wanting to be 

tested, the time of receiving the news 

of the test result is a turning point of 

sorts, as genetic knowledge is, in a 

sense, life-altering information. In fact, 

it is not uncommon for individuals 

to describe life before and/or after a 

genetic test result. 

…not uncommon to 

underestimate extent of 

emotional reactions... 

Prior to undergoing genetic testing, 

individuals often have a sense that 

they will likely have reactions and 

may even anticipate exactly how they 

will feel in response to a test result. 

Some individuals feel that they are 

likely to test positive, indicating that 

they carry a mutation, while others 

may expect that they likely do not 

carry a mutation. Typically, such 

expectations are based on the family 

history experience (e.g. multiple 

cancer diagnoses in a family or losses, 

or shared characteristics of a family 

member who had the disease (e.g. 

“I look like my mother so I think I 

probably carry the mutation”). 

Even when a person anticipates 

a particular response, it is not 

uncommon to underestimate the 

extent of emotional reactions that may 

arise, and while an individual could 

feel prepared for the test result, he/ 

she has no real way of knowing the 

level of reactions – the roller coaster 

emotions that can result after receiving 

news of the test result or the difficult 

choices regarding whether or not to 

simply go for screening or to undergo 

prophylactic surgery. 

It is important for individuals to 

realize that these reactions are a 

normal part of the process. The 

testing experience itself causes several 

stressors, including evoked memories 

of the cancer experiences of loved 

ones; care-giving experiences for some, 

and the painful memory of losses of 

family members for others. It is also 

normal to experience feelings of fear 

and vulnerability, such as a loss of 

confidence around one’s current and 

future health. Some women describe 

feeling like “damaged goods” or 

articulate how they always felt they 

would develop cancer and that it was 

just a question of when. 

Some individuals have endured 

multiple losses and describe the test 

result itself as a kind of loss. For 

example, one woman who received 

the news that she carries a BRCA1 

gene mutation stated that, “I have lost 

many in my family to cancer and now 

with this news…I feel like I have had 

another hit and lost something again.” 

Understandably, a sense or memory 

of a felt loss causes feelings of grief, 

sadness or even anger, and the 

power of such emotional reactions 

Dr. Mary Jane Esplen 

can be surprisingly strong, despite 

that the losses may very well have 

been experienced several years ago. 

For those who have lost a mother or 

father at a young age, for example, 

the feelings can be very powerful. 

Sometimes the person experiences 

a strong identification with the lost 

parent, such as a very deep sense of 

feeling similar, so much so that life 

may seem to even be repeating itself: 

(e.g. “...my mother got ill with cancer 

at 39...and I don’t think I will be 40 

either...she died of cancer...maybe the 

same will occur to me”). This powerful 

force often creates a strong sense of 

fear, so much so that a person can feel 

pressure to achieve personal goals 

prior to a time when one believes the 

disease may emerge. Alternatively, it 

can result in having concerns about 

developing cancer which play out in 

patterns, such as having a strong urge 

to eat healthy, exercise or to use other 

strategies to minimize the cancer risk. 

If this is done in an unbalanced way, 

it can begin to impact on a person’s 

quality of life. 

balance important … 

Whether it is feelings of fear or a 

sense of anger or loss, it is helpful to 

recognize these feelings and allow 

them to occur rather than put them 

away or pretend that they do not exist, 

as they are valid and it is helpful to 

experience and process them rather 

than have them impacting in more 

unconscious ways. 

The possession of genetic knowledge has 

implications for other family members. 

Health professionals often encourage 


people to give this information to 

other family members who may be at 

risk for cancer and who may benefit 

from genetic testing. Having genetic 

information can pose challenges for 

many people who may not be close to 

relatives or those who have relatives 

living a great geographical distance 

away. How does one begin to inform 

these individuals? Should it be a 

telephone call or a letter? How does one 

breach the topic of cancer? Individuals 

may fear that they will cause the 

relative to become emotional or have 

challenges in even describing and giving 

out complex genetic terms or their 

associated implications. 

Other challenges include the 

implications for the relevance of the 

genetic information for a person’s 

children. Most parents will want to 

inform their children that they are 

eligible for genetic testing at some 

stage; however, important questions 

need to be considered: How do I tell 

my daughter or son? At what age 

should I inform them? How will they 

react? How much should I tell them? 

Should I wait until they are at the age 

of screening? Understandable concerns 

include the potential reactions of a 

child and whether or not he or she 

will be able to handle the news. Other 

common concerns include the feeling 

that one is holding on to information 

until feeling prepared to disclose it, 

which can result in a person feeling 

less open or even feeling a sense that 

he or she has secret knowledge. 

Options information 

follow test results 

Following the news of the test 

result, individuals are typically 

given information on a number of 

options to consider in managing his 

or her risk, including the need for 

multiple screening tests to monitor 

health (mammograms, ultrasounds, 

MRIs), and the option of prophylactic 

surgeries (prophylactic mastectomies 

or prophylactic oopherectomy). These 

are very personal decisions, and even 

within families it is not uncommon for 

siblings to choose different options. 

For some women, the recommendation 

of being followed through high risk 

screening programs is sufficient 

and they can manage the associated 

anxiety that occurs when going for 

checkups. Other women feel that 

prophylactic surgery is the best choice 

for them in managing their cancer risk. 

The decision-making around these 

preventive and monitoring options 

can be challenging and leave a woman 

feeling unclear and uncertain as to 

which choice is best for her. 

While all women clearly want to 

lower their cancer risk, there is a 

fundamental difference between 

making a choice to have surgery 

when in good health and having 

surgery once disease is detected. When 

making these challenging decisions, 

it is important for women to have 

opportunities to explore their personal 

pros and cons, value systems and to 

gain a clearer understanding about 

which options seem best suited for 

them. There can be significant value 

in working through these decisions 

with a healthcare professional such 

as a mental health professional, a 

nurse, or with her genetic counsellor. 

Women adjust more optimally to their 

decisions when they feel as though 

they were fully informed, had taken 

the time to consider their options, had 

opportunities to explore their views, 

understood the implications and 

potential results and side effects, and 

felt ready to make them. 

Regardless of how well-informed 

a woman feels, it is important to 

recognize that along with the challenges 

around medical decisions, there will 

be emotional and physical implications 

that require time and an adjustment 

period. Again, these reactions are 

important to recognize as a normal part 

of the process. Surgeries which alter 

functioning and physical appearance or 

sensation will result in changes to body 

image and feelings about oneself, and 

can affect self-esteem and require some 

time to adjust to. 

Common emotional reactions include 

feelings of anxiety prior to having 

surgery, feelings of sadness, loss and 

a need to mourn the loss of the prior 

physical self. It takes time for the 

woman to become familiar with her 

new sense of self. Women who feel 

that they are overwhelmed with these 

emotional reactions or believe that 

the adjustment period may be taking 

too long should consider seeking 

professional help from a counsellor, 

meeting with other women in similar 

situations through peer support or 

support groups, or look for relaxation 

and meditation techniques to manage 

stress levels and emotional reactions. 

The changes that occur as a result of 

surgeries can also have implications 

for intimate relationships. Sometimes 

it is difficult for partners to understand 

how to assist a woman in her 

adjustment, or couples may find it 

challenging to openly discuss their 

perspectives and fears surrounding 

the changes or their own personal 

reactions. For example, women can 

feel like they have lost their sense of 

femininity or that they have lost the 

ability to perform a certain role (e.g. 

reproductive roles). They may feel 

“different” or even older. Some find 

themselves with a lower libido if they 

have entered into menopause. Most 

women work successfully through 

these feelings alone or with their own 

supports, but health professionals or 

counsellors can be helpful in assisting 

women or couples to navigate these 

emotional challenges. Following their 

adjustment periods, most women 

feel satisfied that they made the right 

decision and benefit through the 

comfort provided by having a lower 

risk for cancer as a result of the choice 

they made. 

Other challenges around surgery 

involve discussions with children 

to inform them that their mother is 


having surgery but is not currently ill. 

It is important to let children know 

that she will be okay when she returns 

from the hospital. The post-surgical 

recovery period requires discussions 

and changes in roles and routines at 

home and in some cases women will 

not be able to carry or hold young 

children or perform many physical 

tasks. These changes require some 

explanation to the child in an ageappropriate 

manner while minimizing 

the potential for the child to become 

fearful. The use of toys, dolls, and 

open discussions and preparation 

before surgery can assist the child 

to adjust to the changes that occur 

following surgery and to provide some 

understanding around the situation 

while minimizing alarm. 

These are just a few of the most 

common reactions and issues that are a 

part of the genetic testing process and 

its implications. Adjustment is just a 

normal part of the process. Reactions 

can vary but most individuals do 

adjust over time and they are able 

to work through these challenges on 

their own or with friends and family 

support. Approximately 10-20% of 

individuals require more emotional 

support and assistance in working 

through adjustment issues and 

coping with the associated stressors, 

like having surgery, or the reactions 

that can occur around a genetic test 

result. Individuals may benefit from 

talking openly with their healthcare 

professionals or with their own 

families and peer supports as they 

learn to cope with their test results and 

during the periods when they must 

weigh personal options. 

Strategies that can help individuals 

to gain clarity and cope with and 

work through these challenges are 

also useful and can be found through 

Internet searchers or through genetic 

testing centres and cancer clinics. 

Observing the challenges that occur as 

a result of genetic testing as stressful 

and requiring an adjustment period 

allows the individual to regard these 

reactions as a normal part of the 

process. Hopefully, such a context will 

help individuals to ask for help more 

often, seek out strategies and minimize 

the opportunity for more distress that 

can affect one’s quality of life. 

Services and supportive tools that 

can be helpful: 

• Websites 

• Chat lines; links to meet others in 

similar situations 

• Support groups, especially 

those that address relevant 

areas of concern, either peer or 

professionally-led 

• Decisional aids or tools to assist 

with medical decision-making (ask 

your genetic counsellor or support 

team at your local cancer centre or 

hospital) 

• One-on-one counselling with a 

nurse, mental health professional, 

genetic counsellor, or family doctor 

• Meditation techniques 

• Stress management strategies (yoga, 

exercise, guided imagery) 

• Reading materials (Internet based, 

CD ROMs, books, self-help books, 

pamphlets) 

You should consider seeking 

professional assistance when 

you have: 

• Difficulty sleeping 

• Strong emotional reactions 

(e.g. grief, sadness, anxiety, 

crying episodes that last more 

than a couple of weeks, feeling 

overwhelmed) 

• Anger outbursts 

• Difficulty concentrating 

• Difficulty carrying out roles at 

home or work 

• Extreme feelings of “being alone” 

• Withdrawal from hobbies, work, 

friendships 

• Lack of clarity around a decision, 

ambivalence in considering options, 

unable to make a decision 

• Uncertainty about how to discuss 

genetic information with offspring 

or other family members 

• Challenges when communicating to 

family members 

• Difficulties accepting changes in 

body image or dealing with the 

impact of surgery • 

Dr. Mary Jane Esplen is a Clinician- 

Scientist at the University Health 

Network, a Professor at the Department 

of Psychiatry, Faculty of Medicine, 

University of Toronto, and is the 

Inaugural Director of the de Souza 

Institute. She is also a Canadian Institute 

of Health Research scientist studying the 

psychosocial impact of genetic testing 

as well as having cancer. Dr. Esplen 

received a Ph.D. in psychosomatic 

medicine from the Institute of Medical 

Sciences, University of Toronto, and 

completed a post-doctorate fellowship in 

cancer genetics at the Samuel Lunenfeld 

Research Institute in Toronto. She is 

a therapist and researcher working in 

psychosocial oncology and teaches at the 

University of Toronto. She has a strong 

interest in developing measurement tools 

and interventions for cancer genetic 

populations and individuals with cancer. 

Dr. Esplen is the recent past president of 

the Canadian Association of Psychosocial 

Oncology. 


Scarred, Single 

and Sexy 

By Lynda McHenry 

It has been almost five years since 

my bilateral mastectomy. I was 

diagnosed with DCIS (Ductal 

carcinoma in situ) right before my 

39th birthday. My older sister, 

Maureen, was diagnosed at age 41 

with an aggressive, invasive breast 

cancer. If it wasn’t for her, I would 

never have known to look for it. 

I would be well on my way to an 

early grave. My Aunt Pauline had 

passed away at age 47 of bilateral 

ovarian cancer, leaving her adopted 

daughters when they were just 10 and 

13. My dad, Fred, was diagnosed with 

prostate cancer at age 64. My illness 

suddenly confirmed a family history. 

My best option, according to my 

dad’s research, was to remove all 

breast tissue to reduce the risk 

of a recurrence. Thankfully, as 

my pathology report showed a 

precancerous condition in the other 

breast, I had a surgeon who supported 

my decision. I originally was hoping 

for a TRAM flap procedure (a 

tummy tuck and 

reconstruction all 

in one operation). 

However, I was not a 

“good” candidate for 

that type of surgery. 

I apparently wasn’t 

“fat” enough and the 

end result could leave 

me with stomach 

bulging issues. I was 

thinking, I have that 

problem now, but 

at least I can do sit 

ups if I want to fix it! 

The Latissimus Dorsi 

flap reconstruction 

was also not a good Lynda in a dress! 

option as I need those 

muscles for my job. I’m a lifeguard. I 

need to be able to swim WELL. So that 

left implants (Baywatch here I come!). 

I was told that even with 

the largest implants that 

they made, the surgeon 

would have trouble 

making them look right 

due to the broad span of 

my chest wall. I wasn’t 

keen on going that route 

anyway. 

My final conclusion was 

to “leave well enough 

alone.” I was symmetrical 

and avoiding another 

surgery sounded good 

to me. It would give me 

incentive to go to the 

gym to make my stomach 

as flat as my chest and it would be a 

constant reminder of just how precious 

every day is. My youngest daughter 

was going through puberty, I was 

going through liberty. I am sure I’m 

saving a bundle on bras. Most woman 

I know who have had reconstruction 

surgery are married. I went through 

my illness and operations as a single 

parent with three daughters. Without 

a spouse, I didn’t have to include 

anyone else in the decision-making 

process. You could probably flip a coin 

as to which was easier. Fortunately, I 

had very supportive family members 

and friends. It was a blessing to have 

my e-mailing buddies. Sort of like 

journalling with 

feedback. 

This leads me 

to where I am 

today. I’m a 

single 41-yearold 

breastless 

wonder. I have 

never been 

dainty and 

feminine. I am 

not comfortable 

in dressy clothes. 

I wear a tank 

top and shorts at 

work and I love 

it! Most people 

I encounter 

at work are aware of my surgery. 

Wearing prostheses seemed like a 

“false front” since they would know 

Lynda at Peter Hemingway Fitness 

and Leisure Centre in Edmonton, 

Alberta 

“they” weren’t real. 

It doesn’t bother 

me to be flatchested 

in public. 

Occasionally 

someone will 

complain of their 

“AA’s” and I say 

“at least you have 

nipples! Some of 

them still think my 

scar tissue gives 

me more cleavage 

than they have! Go 

figure! 

My friend, Sue, 

who is also 40ish, 

single and breastless said, “So what 

do you say to someone who could 

be potentially in a relationship with 

you? ‘Hey, I’d like to be upfront 

about something’ or ‘I’d like to get 

something off my chest’ then pull out 

the prostheses and slap them down on 

the table.” We both know that half the 

men out there will not be interested 

once they find out we don’t have any. 

It is a good thing that we both know 

that they are not the ones we would 

want to be with anyway. It does make 

things a little more awkward, though. 

Losing a physical part of my femininity 

was strange. What else could make 

me feel like a woman? Having my 

ovaries removed and sending me 

through surgical menopause? Hot 

flashes. Yes, hot flashes make you 

feel like a woman. You bond with 

other women who know what those 

little power surges feel like. How odd 

that the absence of more womanly 

components could create new, very 

female experiences. 

Yet, does it really matter? What is 

more important is what makes me feel 

like I’m alive. Quality of life counts. 

My life expectancy may have been 

only 47. My sister passed away last 

year, a week before her 47 th birthday. 

She missed her son’s graduation from 

high school by a month. When I turn 

48, it will be a very large milestone 

and cause for celebration. I have done 

everything I can possibly do to reduce 


the risk of hereditary cancer. A risk I 

describe as similar to holding dryer 

lint to a match. Could the match be a 

simile for stress? We may never know 

how external contributing factors 

play a role for someone with a predisposition 

to cancer. It is important 

not to blame ourselves for something 

we were born into. 

I feel vibrant watching my girls grow 

up. Trying snowboarding for the first 

time, building a snow fort, teaching 

them to drive a car, introducing them 

to great oldie TV shows like “Quantum 

Leap” and “M*A*S*H”. Laughing out 

loud. The hugs that never seem to 

end, the family photos, the extremes of 

teenage PMS to uncontrollable giggles. 

I feel empowered when I create things 

in pottery. I feel energized after a 

good workout at the gym. I feel 

fortunate when I catch a beautiful 

sunrise. I feel pure joy when I hear 

Kim Robertson play her harp and 

Israel Kamakawiwo’s version of 

“Somewhere over the Rainbow.” 

I feel radiant savouring good 

chocolate. I feel vivacious flirting 

with the young man at work who 

calls me “pretty lady” and blows 

me kisses. (Shhhh, don’t tell his 

girlfriend!) 

What could be better than all that? 

Our genetic results are inconclusive, but 

our geneticist says that we are diagnostic 

of a genetic mutation. There is no test for 

my beautiful daughters. They will have 

to rely on surveillance 

until something better 

comes along. I am 

grateful they have the 

power and knowledge 

to guide them through 

our family journey. My 

dad has cheated death 

and celebrated his 77 th 

birthday last August. 

He has sacrificed many 

joys to achieve this. 

There is hope that my 

daughters can do the 

same. 

Lynda and friend doing the “cleavage pose” 

When I grow up, I’m going to be a 

Grandma. Something my sister never 

got to be. I can hardly wait! • 

Lynda McHenry was born and raised in 

Calgary, Alberta, the youngest of four 

siblings, and has spent the past 16 years 

living in Edmonton. Her three daughters 

are first and foremost in her life. She has 

primarily worked in the field of aquatics 

and continues to work as a lifeguard for 

the City of Edmonton at the historical 

landmark, Peter Hemingway Fitness and 

Leisure Centre. She has been passionate 

about pottery for the past six years, 

becoming somewhat accomplished. She has 

completed five sprint triathlons in the past 

two years. It is through these endeavors 

she continues to enrich her life with joy 

and zeal. 

Lynda enjoying the mountains 

More Resources About BRCA 

BreastCancer.org: 

BreastCancer.org covers news about BRCA at 

http://www.breastcancer.org/risk/genetic/bcrisk_abnrml_genes.jsp?gclid=CJ-U4fn6qaACFUFM5QodMgNzbA 

Looking for BRCA Support? Find it Online on Facebook: 

BRCA1/BRCA2+ Canada is a networking group for Canadians with BRCA1 and/or BRCA2 hereditary breast 

and ovarian cancer genes and their families. Members must request to join and the group has limited public 

content. 

Find this group at http://www.facebook.com/group.php?gid=38249555928&ref=ts or search for it on facebook 

by typing in “BRCA1/BRCA2+ Canada.” 


The Psychobiological Risk and Resilience of Young 

Families Affected by Maternal Breast Cancer 

By Melissa A. Vloet, PhD Candidate and Mario Cappelli, PhD, C. Psych. 

Among Canadian women, 

breast cancer continues to lead 

cancer incidence rates. In 2009 

alone, 22,700 women were diagnosed 

with breast cancer. Breast cancer 

affects women across the lifespan, 

and has been identified as the most 

commonly diagnosed cancer in women 

between the ages of 20 and 49. 1 This 

specific group of women faces many 

of the same trials as other women 

who are negotiating breast cancer 

diagnoses and treatment options; 

however, less is known about how 

this group of younger women copes 

with their illness. Research groups 

like ours, located at the Children’s 

Hospital of Eastern Ontario (CHEO), 

have taken a special interest in this 

younger population of breast cancer 

patients and survivors. Our research 

has traditionally been focused on 

identifying how women with breast 

cancer and young families juggle the 

competing factors in their lives. In 

addition, our investigations have also 

provided insight into how children and 

adolescents cope with their mothers’ 

breast cancer diagnoses. 

The available literature on the 

occurrence of breast cancer in younger 

populations suggests that younger 

groups of women diagnosed with 

breast cancer differ from their older 

counterparts in a number of important 

ways. For instance, this younger cohort 

of women is more likely to be engaged 

in parenting activities. To date, the 

literature on cancer and parenting has 

identified several important factors 

that impact the family’s ability to cope 

with cancer. One of the most important 

determinants of family well-being 

appears to be family communication 

about breast cancer. Researchers 

studying parental cancer have found 

that many children and adolescents 

hold misperceptions about their 

parents’ cancer. These misperceptions 

are believed to develop from a lack of 

information and reassurance within 

the family and between health care 

providers and children. 2 3 Investigators 

have determined that communicating 

clear and consistent information (in a 

developmentally appropriate manner) 

promotes more effective coping in 

children and adolescents. For instance, 

children and adolescents who believed 

they were better informed about their 

parents’ cancer reported using more 

adaptive coping strategies to deal with 

some of the difficult emotions they 

experienced. 4 

One of the common myths about 

mothers with breast cancer is that 

their children experience higher 

rates of anxiety and depression than 

other kids. However, research has 

demonstrated that, in general, children 

and adolescents of mothers with 

breast cancer actually cope quite well. 

Certainly, this is good news for families 

adjusting to breast cancer. Despite this, 

there is still reason to be concerned 

about young families coping with breast 

cancer. Researchers have found that, 

although most children and adolescents 

cope well, female adolescents often 

experience significant struggles related 

to their mothers’ diagnoses. Compared 

to all other groups of children and 

adolescents studied, adolescent 

daughters report the highest levels of 

anxious and depressive symptoms when 

faced with parental breast cancer. 5, 4 In 

part, this distress is due to role shifts 

and added familial responsibilities 

that are commonly experienced by 

adolescent daughters. 

Adolescent daughters often report 

feeling torn between assisting their 

families and establishing independence 

(an important developmental task for 

all adolescents). They also experience 

Melissa A. Vloet 

concerns about how the shifts in 

their family roles will impact their 

mother-daughter relationships in the 

long term. 6 Many of the adolescent 

daughters studied also report concerns 

related to the disease of breast cancer 

itself. Personal risk for breast cancer 

seems to be one of their chief concerns. 

In some cases, this concern can develop 

into a maladaptive preoccupation with 

their own breast health. 

Evidence indicates that breast cancer 

diagnosed in women under 50 years of 

age is more commonly associated with 

genetic factors. To date, scientists have 

identified two specific gene alterations 

associated with an increased risk for 

breast cancer occurring in BRCA1 

and BRCA2. Researchers studying 

genetic testing for breast cancer have 

found that if a woman has alterations 

in BRCA1 and/or BRCA2, there is 

a 50% chance that her children will 

inherit the same alteration. Adolescent 

women who grow up in families 

where the risk for developing breast 

cancer is higher are often aware of the 

hereditary nature of breast cancer and 

may believe that they are more at risk 

for developing the illness themselves. 

Our research group is currently 

studying how adolescent girls feel 

about their mother’s breast cancer, 

familial breast cancer risk, their 

personal risk for breast cancer, and the 

communication that occurs within the 

family concerning breast cancer risk. 


At present, we are recruiting women 

who have been tested for alterations 

in BRCA1 and/or BRCA2 and their 

families to participate in our studies. 

In our previous research we have 

demonstrated that mothers’ concerns 

about an adolescent daughter’s breast 

cancer risk are particularly important 

in determining whether or not a 

mother will undergo genetic testing for 

the alterations in BRCA1 and BRCA2. 

Although the process of genetic 

testing has its own set of advantages 

and disadvantages for women, it also 

presents women with an important 

dilemma. Many women who undergo 

genetic testing feel confused about 

how to discuss their results with 

family members. This struggle can 

become even more difficult when there 

are children and adolescents involved. 

Our preliminary investigations 

of children’s attitudes concerning 

genetic screening have indicated that 

adolescents have a favourable attitude 

toward genetic technology and that the 

majority would elect to be screened 

for BRCA1/2 mutations if given the 

opportunity. However, less is known 

about the impact of maternal risk for 

breast cancer on children because the 

extent to which adults communicate 

genetic risk of breast cancer to children 

is relatively unknown. 

Dr. Mario Cappelli 

Limited research suggests that 

approximately 50% of women who 

are tested for the BRCA1/2 alterations 

elect to share their risk estimate results 

with dependent children under the 

age of 18. 7 However, the impact this 

may have on adolescent daughters 

is unclear at this time. Our current 

studies are investigating how families 

communicate about genetic risk for 

breast cancer and the impact this 

has on family coping. In addition to 

working with mothers and adolescent 

daughters, we are also looking for 

fathers to participate in our studies. 

Since breast cancer has traditionally 

been identified as a women’s health 

issue, researchers have tended to 

focus on female participants in their 

investigations of genetic mutations 

associated with breast cancer. The role 

of fathers in the negotiation of genetic 

risk for breast cancer is currently not 

well understood. However, indicators 

suggest that fathers demonstrate a 

strong desire to assist their daughters’ 

roles in coping with their risk for 

breast cancer. Our research group will 

expand on this knowledge by defining 

the role that fathers play in daughters’ 

conceptualization and interpretation 

of risk for BRCA1/2. This will be 

an important step in addressing 

how families cope with genetic risk 

for breast cancer and developing 

guidelines to assist health practitioners 

serving these families. • 

References 

1. Canadian Cancer Steering Committee 

(2009). Canadian Cancer Statistics, 2009. 

Toronto: Canadian Cancer Society. 

2. Hilton, B.A. & Gustavson, 

K. (2002). Shielding and being shielded: 

Children’s perspectives on coping 

with their mother’s cancer and 

chemotherapy. Canadian Oncology 

Nursing Journal, 12, 198-206. 

3. Forrest et al. (2006). Breast cancer in the 

family: Children’s perceptions of their 

mother’s cancer and initial treatment. 

BMJ, 332, 998-1003. 

4. Huizinga G.A., et al. (2005). Stress 

response symptoms in adolescent 

and young adult children of parents 

diagnosed with cancer. Eur J Cancer. 

2005, 2, 288-95. 

5. Compas B.E. et al., (1996).When mom 

or dad has cancer: II. Coping, cognitive 

appraisals, and psychological distress 

in children of cancer patients. Health 

Psychol., 3,167-75. 

6. Spira, M. and Kenemore, E. (2000) 

Adolescent daughters of mothers with 

breast cancer: Impact and implications. 

Clinical Social Work, 28, 183-194. 

7. Tercyak K. (2001). Psychological issues 

among children of hereditary breast 

cancer gene (BRCA1/2) testing 

participants. Psycho-oncology 10, 336-46. 

Melissa A. Vloet is a doctoral student 

in Clinical Psychology at the University 

of Ottawa. She previously attended the 

University of Prince Edward Island 

(UPEI) where she received the institution’s 

most prestigious entrance award and was 

recognized as an inaugural Wanda Wyatt 

Scholar. She graduated from UPEI in 2006 

with a Bachelor of Arts, double honours, 

in English Literature and Psychology. 

Since moving to Ottawa in 2006 to pursue 

graduate studies under the supervision 

of Dr. Mario Cappelli, Ms. Vloet has 

received a Doctoral Research Award from 

the Canadian Institute of Health Research 

and currently participates in their Child 

Clinician-Scientist Training Program. 

Her research to date has examined issues 

surrounding breast cancer diagnosis, 

parenting, genetic risk, and family 

communication. Most recently, Ms. Vloet 

attended the World Health Organization’s 

Women’s Mental Health Conference in 

Melbourne, Australia, where she presented 

some of her research findings to an 

international audience. 

Dr. Mario Cappelli is currently the 

Director of Mental Health Research at the 

Children’s Hospital of Eastern Ontario 

(CHEO) and the CHEO RI, a Clinical 

Professor of Psychology, Adjunct Professor 

of Psychiatry, Adjunct Professor in the 

Telfer School of Business and a Member 

of the Faculty of Graduate and Post- 

Doctoral Studies at the University of 

Ottawa. Dr. Cappelli first attended the 

University of Ottawa, graduating in 1983 

in psychology, and then attended Carleton 

University and obtained his MA (1986) 

and PhD (1991). Dr. Cappelli completed a 

pre-doctoral clinical internship at CHEO 

and obtained further clinical training at 

the Child and Family Centre, Chedoke- 

McMaster Hospital, as a post-doctoral 

fellow. Dr. Cappelli’s areas of expertise are 

clinical child and health psychology. After 

completing his PhD, Dr. Cappelli returned 

to CHEO and has worked in both inpatient 

and outpatient clinics. In addition to his 

clinical activities, Dr. Cappelli is involved 

with teaching and research. Dr. Cappelli’s 

research foci are in the health service and 

systems in the area of genetics and mental 

health. Dr. Cappelli’s research is funded by 

CIHR, MOHLTC and most recently the 

RBC Foundation. 


Top 10 Things Young Previvors 

(Probably) Don’t Want to Hear 

By Steph H. 

10) But you’re so young! 

Well, I’m staring down the big 3-1 

next week, so I don’t really think I’m 

all that young any more (but not yet 

middle-aged... didn’t Britney Spears 

write a song about that?), but all that 

is beside the point. Young women do 

get breast cancer, and young women 

with the breast cancer gene, especially, 

get breast cancer. In fact, recent studies 

suggest that women with BRCA 

mutations are getting sick an average 

of six years earlier than the previous 

generation. So we’re never too young 

to get breast cancer. 

9) Well, if you get breast cancer, at 

least it’s curable. 

This impression that breast cancer 

is somehow the “good cancer” to 

get befuddles me. Have we really 

sanitized the disease so much with 

all the pink ribbons and smiling bald 

ladies in ads that breast cancer has just 

become a woman’s right of passage? 

Breast cancer changes lives. And breast 

cancer ends lives. I’m not sure why 

we have forgotten (willfully ignored?) 

this inconvenient truth. And unless I 

missed the headlines, there still is no 

cure for cancer. What’s more, women 

with BRCA mutations who have had 

breast cancer have a 40% chance of 

recurrence and an elevated risk of 

developing second primary cancers. 

In other words, breast cancer isn’t like 

chicken pox, folks. You don’t get it 

once and are immune to it forever. 

8) You’re removing healthy body 

parts that may never develop 

cancer. That’s crazy. 

To you, maybe. But to me, it’s the 

opposite of crazy. It’s totally sane and 

rational. I have a nearly 90% chance of 

getting a disease I know I can prevent 

if I have this surgery. What’s crazier, 

getting it when you didn’t have to or 

not getting it because you had surgery? 

I’m going to go with what’s behind 

door number two, Monty. 

7) So wait. If I was told I had the 

brain cancer gene, I’d have to 

remove my brain? 

Are you sure you haven’t already? 

No. You would not remove your 

brain because you need it to live. I am 

removing my breasts because I can live 

(both figuratively and literally) without 

them. No, I won’t be able to breastfeed, 

which is evolutionarily their only 

function. But my future children will 

survive and thrive on formula. Lots 

of people weren’t breastfed. And they 

turned out fine. My kids will be, too. 

6) That’s not what I would do. 

You are free to think that, but I don’t 

want to hear it. Truthfully, youimaginary-person-who-doesn’t-havethe-BRCA-mutation, 

I don’t really care 

what you would do because you don’t 

know what it feels like to be me. So 

zip it. 

5) What if you have the surgery 

and then die of something else? 

Well, that’s the point right? Not to die 

of breast cancer? I don’t know how 

long I’ve got, but I’d like to spend my 

time here without breast cancer. 

4) Look on the bright side; You’re 

getting a free boob job! 

Reconstruction does not equal a boob 

job, folks. Enough said. 

3) I always hated my boobs. You’re 

lucky to be getting rid of them. 

I know lots of women out there have 

vexed relationships with their bodies, 

and there are parts of mine (armpit fat 

area, I’m looking at you) that I hate. 

But my boobs are not one of them. I 

really like my boobs. They were totally 

unexpected additions to my life. I lived 

until age 21 without ever needing 

to actually wear a bra. And then 

suddenly, I needed one. A lot. And 

part of me is still that desperately flatchested, 

square torso-ed boy-shaped 

girl. So when I see these womanly 

mounds on my body, I do a silent 

little touch-down celebration. Because 

I wanted them for so long and they 

finally arrived and they are beautiful. 

So, no, I’m not lucky to be getting rid 

of them. I’m lucky for the time I had 

with them. 

2) You should do [insert healthy 

lifestyle choice]. I hear that helps 

prevent breast cancer. 

Well, if we knew how to prevent it, no 

one would get it, right? I hate to be so 

pessimistic, but, especially in women 

with BRCA mutations, all of this 

healthy-lifestyle-doing-yoga-drinkinggreen-tea-taking-vitamins, 

seems like 

tilting at windmills to me. But, I’ll 

play along. So, to prevent cancer I 

need to be healthy. But I already am. 

Vegetarian? Check. Runner? Check. 

Yogi? Check. Non-smoker? Check. I’m 

doing all I can here, folks. I’m staring 

down a 9 in 10 chance of getting breast 

cancer. I wonder really what difference 

it makes if I forgo that Diet Coke or 

glass of white wine. 

1) Don’t do anything drastic yet. 

There will be a cure soon. 

I sincerely hope you are right. And I 

sincerely hope that in five, ten, twenty 

years, prophylactic mastectomies 

for high-risk women will seem as 

draconian as bloodletting. But I’m not 

going to stand around idly and wait 

for miraculous medical advances. I’m 

doing the best with the technology 

and understanding we currently have. 

Top Ten Things Young 

Previvors (Probably) 

Want to Hear 

10) Is there anything I can do? Do 

you need a ride anywhere? 

Wanna grab a drink? 



Familial Breast Cancer and No BRCA1/2 Mutation? 

Uninformative Results and How the Familial Breast Cancer Research Unit 

is Seeking Answers 

By Jillian Alston, MD Candidate 

In the mid-nineties, the discovery 

of the BRCA1 and 2 mutations 

answered some of the questions 

that many had about the alarming 

number of breast and/or ovarian 

cancers in their family. Furthermore, a 

woman from such a family who has not 

been diagnosed with cancer can now 

establish her risk of breast cancer by 

being tested for her family’s hereditary 

gene. Women who receive positive 

results struggle with how to manage 

their increased risk. Fortunately there 

are recommendations for BRCA1/ 

BRCA2 carriers with ever-growing 

research to improve the management 

and prevention of cancer in these 

families. I am aware that I have 

immensely minimized the complex 

nature of the genetic testing process 

and all of its considerations, including 

its influence on psychological wellbeing 

and family dynamics. As well, in 

no way do I wish to oversimplify the 

difficulty of one’s journey of living with 

a BRCA1/2 mutation. 

Jillian Alston 

However, the focus of this article 

is on those women who have an 

overwhelming number of relatives 

diagnosed with breast cancer – but 

who do not have a known mutation in 

their family. Approximately 15-20% of 

women who are diagnosed with breast 

cancer have a strong family history of 

breast cancer. This number includes the 

5% incidence of breast cancer that is 

found in women with a mutation in one 

of the two known breast cancer genes, 

BRCA1 and BRCA2. This indicates that 

the majority of women who have had 

genetic testing for their familial breast 

cancer have no specific genetic reason 

for the family history, in that they 

receive an “uninformative result.” 

Women who have a significant 1 breast 

cancer history in their family are two to 

four times more likely to develop breast 

cancer than females without a significant 

family history, even if they do not 

have a BRCA1 and BRCA2 mutation. 2 

There is currently little information 

available to inform these women and 

their physicians about screening and 

prevention practices. Unlike BRCA1/2 

mutation carriers, there is no established 

standard for offering earlier screening 

(either mammography or MRI), or 

for offering chemoprevention or 

prophylactic surgeries (e.g. bilateral 

mastectomy or bilateral salpingooophorectomy). 

Dr. Steven Narod and his research team 

at the Familial Breast Cancer Research 

Unit of Women’s College Research 

Institute in Toronto, are trying to 

improve the care of these families by 

initiating the research study Risk Factor 

Analysis of Familial Breast Cancer. This 

is an unprecedented long-term study 

of women with strong family histories 

of breast cancer who do not carry a 

mutation in one of the two breast cancer 

genes (BRCA1/BRCA2). 

The study involves testing for other 

positive genetic markers of breast cancer 

as well as examining the interaction 

between other various factors that 

may be associated with breast cancer 

development in women from highrisk 

families. Some of these include 

Vitamin D levels, insulin levels, dietary 

factors, demographic characteristics and 

others factors. As well, the study will 

examine the effectiveness of prevention 

strategies that various women use. The 

goal is to hopefully develop future 

recommendations for the prevention and 

management of familial breast cancer. 

If you are concerned about the incidence 

of breast cancer in your family or if you 

are concerned about breast cancer with 

the future generation of your family, the 

research team invites you to take part 

in this study. The team is looking for 

women who have a significant family 

history of breast cancer and who have 

no known BRCA1/2 mutations in their 

family. 

For more information about the 

study, or to see if you are eligible to 

participate, please visit: 

http://www.womensresearch. 

ca/noncarrierstudy/index.php. 

Alternatively, you may contact Jill by 

email at jillian.alston@wchospital.ca or 

call 416-351-3800 ext 2715. 

The Familial Breast Cancer 

Research Unit 

World-renowned research to improve the 

lives of families with familial breast cancer 

Dr. Steven Narod 

The Familial Breast Cancer Research 

Unit is a division of the Women’s 

College Research Unit. Under the 

direction of Dr. Steven Narod, the 

world’s most cited breast cancer 

researcher, the unit conducts worldclass 

research that contributes to the 

prevention and management strategies 

for women with familial breast cancer 

and their families. 

The unit offers a service of genetic 

counsellors that support women and 

their families through the genetic testing 


process. They discuss their options and 

implications of genetic testing. As well, 

these interactions are the source of new 

research questions. 

For more information about the Familial 

Breast Cancer Research Institute, please 

visit: http://www.womensresearch.ca/ 

programs/genetic_cancer.php. • 

References 

1 Significant Family History is defined as having 

either two female relatives diagnosed 

with breast cancer under 50 OR three (or 

more) female relatives diagnosed at any 

age on the same side of the family (within 

first and second degree relatives). 

2 Your individual risk of developing breast 

cancer may vary from this number, and as 

part of this study, we hope to better understand 

the influence of family history on the 

risk of developing breast cancer. 

Jillian Alston is a second year medical 

student at the University of Toronto. She 

is completing the Comprehensive Research 

Experience for Medical Students Distinction 

and Research Program at the Familial Breast 

Cancer Research Unit. She has a Bachelors 

of Health Sciences Honours degree from 

McMaster University. Jillian hopes to 

continue research throughout her career as a 

medical doctor. 

Dr. Steven Narod is a Tier I Canada 

Research Chair in Breast Cancer. He is a 

professor in the Department of Public Health 

Sciences at the University of Toronto. 

Research and Academic Interests: Dr. Narod 

conducts longitudinal studies of women from 

families with and without genetic mutations 

related to breast cancer. He is currently 

focused on translating our emerging 

knowledge about hereditary cancer into 

more effective strategies for the prevention 

and management of breast and ovarian 

cancer. He is also interested in delineating 

the gene/environment interactions that 

underlie hereditary breast cancer. This 

work may eventually be used to identify 

potential modifiers of cancer risk in highprevalence 

groups. He is currently principal 

investigator on a number of studies looking 

at risk factors associated with hereditary 

breast and ovarian cancer, investigating the 

role of BRCA2 mutations in ovarian cancer, 

and investigating the contributions of CHK2 

gene mutations to breast cancer risk. He also 

participates as a co-investigator on a wide 

range of hereditary cancer studies conducted 

by his students and international colleagues. 

Willow’s Program for Hereditary 

Breast and Ovarian Cancer 

Willow Breast Cancer Support Canada offers four programs for women at 

risk for Hereditary Breast and Ovarian Cancer (HBOC): 

• Peer Support Program 

• Personalized HBOC Information Packages 

• How to connect with others like yourself at www.willow-talk.org 

• How to start your own BRCA 1 and BRCA 2 Support Groups 

Peer Support Program 

Willow’s Peer Support Team answers a wide range of questions related to 

Hereditary Breast and Ovarian Cancer. The Peer Support Team provides 

support and information that will help you to better understand a positive 

BRCA gene mutation diagnosis and related risk management options. Willow 

can help by offering suggestions such as how to talk to your family members 

about their potential risk of having a BRCA 1 or BRCA 2 gene mutation. 

Willow also offers free interpreter services for individuals wishing to speak 

in their language of choice. All calls are fielded by trained breast cancer 

survivors. 

Personalized HBOC Information Packages 

Willow will provide you with current, credible and clear information on 

all topics related to HBOC. Willow’s health librarian works with the Peer 

Support Team to research your specific questions and to send you a free 

personalized information package, either by e-mail or by post. 

Join www.willow-talk.org 

Willow’s online social networking community connects Canadian women who 

are at high risk for breast cancer. Willow-talk.org provides a forum to share 

your experience and exchange information. 

New HBOC Initiatives for 2010 

Thanks to a grant from the Public Health Agency of Canada, Willow is 

developing programs for high risk women and their families. As part of 

this new initiative, there is a comprehensive Canadian HBOC-specific 

website containing relevant information, resources and online networking 

opportunities for Canadians affected by a hereditary diagnosis. Willow is 

also developing a series of targeted, diagnostically appropriate fact sheets on 

topics relevant to high risk women. • 

Willow Breast Cancer Support Canada is a breast cancer support organization that 

provides free and accessible community-based, survivor-driven information and 

emotional support services for those impacted by breast cancer. 

For more information please call Willow at 1-888-778-3100 or visit 

www.willow.org . 


‘E’ is for Empowered - Are You an e-patient? 

By Colleen Young 

Do you look for health information 

on the Internet and discuss what 

you find with your doctor? 

Have you ever read a posting on a 

discussion forum and thought, “Yeah, 

I have that side effect too. I’m going to 

talk to my doctor about it?” Then you 

are an e-patient – equipped, enabled, 

empowered and engaged in your health 

and your healthcare decisions. 

According to Wikipedia, “e-Patients are 

health consumers who use the Internet 

to gather information about a medical 

condition of particular interest to them. 

The term encompasses both those who 

seek online guidance for their own 

ailments and the friends and family 

members (e-Caregivers) who go online 

on their behalf. e-Patients report two 

effects of their online health research: 

“Better health information and services, 

and different (but not always better) 

relationships with their doctors.” 

Patients no longer want to receive 

health care passively. We want access 

to information and to our medical 

records, and we want to connect and 

collaborate with our peers. Online 

information, tools that organize health 

data (Google Health) and social 

networking tools (discussion forums, 

blogs, wikis, Facebook, Twitter, etc.) 

are letting us do this in ways never 

before possible. 

And, healthcare providers are 

beginning to understand that patient 

knowledge counts. The authors of the 

paper e-Patients: How They can Help 

us Heal Healthcare acknowledged that 

healthcare providers: 

• Should recognize that e-patients are 

valuable contributors to health care 

• Have overestimated the hazards of 

imperfect online health information. 

Patients are capable of gathering 

quality health information online 

• Have underestimated a patient’s 

ability to provide useful online 

resources 

• Can no longer go it alone. The most 

effective way to improve healthcare 

is to make it more collaborative 

Gone are the days when the doctor was 

the only source of medical information 

and care. As cancer survivor and 

e-patient, Dave deBronkart 

(http://patientdave.blogspot.com/) 

states, “Ushering in the era of the 

participatory patient doesn’t mean 

that ‘doctor knows best’ has shifted to 

‘patient knows best.’ The new patientdoctor 

relationship is a collaborative 

partnership.” 

Collective knowledge and experience 

shared online is valuable. Healthcare 

providers need to embrace the wisdom 

of community knowledge. Together we 

can build confidence in participatory 

medicine – a cooperative model of 

healthcare that encourages and expects 

the active involvement of patients, 

caregivers and healthcare providers. 

Want to be an empowered patient? 

You can take an active role in your 

cancer care. Here are a few tips to get 

you started. 

• Gather information 

When using the Internet, make 

sure the information is accurate, 

objective and trustworthy. 

Websites like www.CBCN.ca and 

www.SharingStrength.ca are good 

places to start. 

• Tap into community knowledge 

Breast cancer support groups and 

online communities are a great 

place to ask questions and get 

answers. Check out the online 

forums at: Breast Cancer Action 

Nova Scotia (http://bca.ns.ca); 

www.breastcancer.org; Breast 

Cancer Now What? 

(www.breastcancernowwhat.ca); 

Caring Voices 

(www.caringvoices.ca); Willow- 

Talk (www.willow-talk.org). 

• Keep track of your health record 

Maintaining an electronic or hard 

copy of your own health record 

can be useful when talking to your 

cancer care team and coordinating 

your care. For more information on 

health records, please visit 

www.SharingStrength.ca. 

• Talk to your health care provider 

Tell your doctor that you want to 

take an active role in your care. Ask 

questions. Recommend websites to 

your cancer care team. • 

Colleen Young is a medical oncology 

writer who takes particular interest in 

writing clear, easy-to-read literature 

for cancer patients. While not a cancer 

survivor herself, Colleen advocates for 

patients, survivors and caregivers. She 

works closely with cancer centres and 

support organizations to help ensure 

that those touched by cancer get the 

information and support they are looking 

for through the printed word. Colleen’s 

role on SharingStrength helps her 

stay connected with the breast cancer 

community. Along with moderating the 

discussion forums on SharingStrength, she 

raises and discusses important community 

issues in the Editor’s Feature and Blog. To 

follow Colleen Young and SharingStrength 

on Twitter, please visit http://twitter.com/ 

SharingStrength. 


CBCN: Here for You 

Donors are important partners at 

CBCN, in good times and in bad times. 

In good times, individual gifts, large 

or small, enable us to bring your 

donations together to develop services 

or resources directly requested by 

survivors and patients. You know 

these are not always the same projects 

that are favored by priorities of 

government and foundation funders. 

In bad times our caring donors stretch 

to find a little more to keep funds 

flowing for services to breast cancer 

patients and survivors. 

If you have 

• attended the Young Women with 

Breast Cancer Conference or want 

to attend the next one 

• called the CBCN office after a 

diagnosis looking for resources in 

your area, 

• esearched on our web site for 

groups or resources of all kinds, 

(60,000 people a month do!) 

• received our newsletter Network 

News, which you are reading now, 

still free, you know the importance 

of these projects 

• received our online newsletter 

Outreach for breaking news 

• joined our Adopt a Riding 

Campaign for survivor advocacy 

• joined and participated in one of 

our project advisory committees 

You know the importance of these 

services! 

Be a partner in funding them now! 

Join our caring, compassionate and 

smart donors who continue to invest in 

support and advocacy for breast cancer 

patients and survivors. 

“Survivor” means much more than a 

television show! 

Tell us what “Survivor” means to you 

and we will publish your email and/or 

letters in our next Network News. 

Give to keep the survivor voice strong! 

We are your “someone to turn to” for 

information you need now. 

Your investment in CBCN keeps the 

good work of our mission going and 

keeps us available for women newly 

diagnosed and breast cancer survivors 

across the country. 

As a unique organization in being 

the only national survivor-led 

organization dedicated to breast cancer 

survivors, we are confident that donors 

will continue to see the value in their 

choice to support us, even in difficult 

times. 

Ways to give: 

Easiest, go to the CanadaHelps web 

site, a secure site serving Canadian 

charities. 

Once there, type in Canadian Breast 

Cancer Network and you will arrive 

at our giving page, just follow the 

instructions. Your receipt, recognized 

by Revenue Canada for income tax 

purposes, will arrive within hours by 

email. 

Consider monthly giving – even $25 a 

month will make a difference! 

Or, send a cheque made out to 

Canadian Breast Cancer Network, 331 

Cooper Street, Suite 300, Ottawa ON 

K2P 0G5. 

You can also call CBCN at our toll-free 

number 1-800-685-8820 and Maureen 

or Judy will take your credit card 

donation. 

We appreciate our donors! 

CBCN’s Website Friends 

Remembered Pages 

The Canadian Breast Cancer Network has established The Friends Remembered Pages so 

we can remember and share the lives of relatives, friends and others near and dear whom 

we have lost to breast cancer, and to celebrate their lives as well as the lives of women and 

men who have survived breast cancer and who continue to live with us in this world as 

well as in our hearts and minds. 

We invite you to contribute obituaries, stories, articles, poems, anecdotes and photos to this 

section about Friends you remember. Send them to cbcn@cbcn.ca. 



Top 10 Things Young Previvors (Probably) 

Want to Hear 

9) I’ll be there for you. 

8) Good for you for doing what’s 

right for you. 

Members, Friends, Funding Partners 

and Corporate Friends 

CBCN gratefully acknowledges the following individuals 

and organizations for their financial contributions for this 

financial year (July 1, 2009 to present) 

7) I don’t want you to get breast 

cancer, either. 

6) I don’t know what it must feel 

like to be going through what 

you are going through, but I 

know it sucks. 

5) Talk to me. I’m here to listen. 

4) When you are recovering from 

surgery, I’ll come over and 

watch DVDs with you, wash 

your hair, and bring you vegan 

junk food. 

3) You are brave. 

2) You are strong. 

1) You will still be beautiful. • 

Steph H. is a young previvor living in 

Chicago. Check out her blog at 

http://goodbyetoboobs.blogspot.com/ 

Member ($25-$99) 

• Hundreds of individuals and groups 

across the country 

Friends of CBCN ($100-$499) 

• Alwyn Anderson 

• Dolores Ast 

• Lisa Bélanger 

• Eva Bereti 

• Isabel Burrows 

• Dr. Eva Butler 

• Carol Ann Cole 

• Dr. Brian D. Doan 

• Karen DeKoning 

• Helen Elsaesser 

• Beata Faraklas of All Hair Alternatives 

& Mastectomy Boutique 

• Chris Foster 

• Ratna Ghosh 

• Dolores Griffin 

• Darlene Halwas 

• Holly Hinds 

• Maureen Jackman 

• Fran Jones 

• Dr. Helen M. Madill 

• Diane Moore 

• Patricia Moore 

• Laurie Porovsky-Beachell 

• Mary Rogers 

• Lyle Spencer 

• Charles & Nancy Weisdorff 

• Jan Zwicky 

Bronze Level Supporter 

($500-$4,999) 

• Bell Canada 

• CyberAlert 

• Telus Communications 

• Tencor 

• Virage 

Silver Level Supporters 

($5,000-$24,999) 

• Dell 

• Mike’s Hard Pink Lemonade 

• Temerty Family Foundation 

• The Harold Crabtree Foundation 

• The Quilt Project 

Gold Level Supporter 

($25,000-$99,999) 

• AstraZeneca 

• GlaxoSmithKline 

• Novartis 

• Pfizer 

• Roche 

• The Cure Foundation 

Platinum Level Supporter 

($100,000 and over) 

• Breast Cancer Society of Canada 

Government 

• City of Ottawa, Ottawa Partnership for Jobs 

• Ministry of Training, Colleges and 

Universities, Government of Ontario 

• Public Health Agency of Canada 

• Service Canada 

• Canada Summer Jobs 

Corporate Sponsors 

• National Fundraising Network / Chocolates 

for Charity 

• Pizzazzing You 

• Sassy Sam’s 

• MOMPowered Inc. 

• Novelty Canada 

• Canadian Gift Concepts 


Canadian Breast Cancer Network Partners 

National Partners 

• Breast Cancer Society of Canada 

• Canadian Breast Cancer Foundation 

• Canadian Breast Cancer Research Alliance 

• Canadian Cancer Society 

• National Cancer Institute of Canada 

• Ovarian Cancer Canada 

• Willow Breast Cancer Support Canada 

• World Conference on Breast Cancer 

Provincial/Territorial Networks 

• BC/Yukon Breast & Gynecologic Cancer Alliance 

• Breast Cancer Network Nova Scotia 

• Manitoba Breast and Women’s Cancer Network 

• New Brunswick Breast Cancer Information Partnership 

• Northwest Territories Breast Health/Breast Cancer Action Group 

• Nunavut Cancer Network 

• Ontario Breast Cancer Exchange Project (OBCEP) 

• Prince Edward Island Breast Cancer Information Partnership 

• Saskatchewan Breast Cancer Network (SBCN) 

• The Newfoundland and Labrador Lupin Partnership 

Provincial/Territorial/Regional/Local Partners 

• Amitié Santé 04 

• Association à fleur de sein 

• Au Seingulier 

• Breast Cancer Action Kingston 

• Breast Cancer Action Manitoba 

• Breast Cancer Action Montréal 

• Breast Cancer Action Nova Scotia (BCANS) 

• Breast Cancer Action (Ottawa) 

• Breast Cancer Action Saskatchewan 

• Breast Cancer Centre of Hope (Winnipeg, Manitoba) 

• Breast Cancer InfoLink (Calgary) 

• Breast Cancer Support Services Inc. (Burlington, ON) 

• Breast Cancer Research and Education Fund 

• Breast Health Centre of the Winnipeg Regional Health Authority 

• Breast of Canada Calendar 

• Canadian Breast Cancer Foundation – Ontario Chapter 

• Cancer Care Manitoba – Breast Cancer Centre of Hope 

• First Nations Breast Cancer Society 

• FLOW 

• Hereditary Breast & Ovarian Cancer Society of Alberta 

• Manitoba Breast Cancer Survivors Chemo Savvy Dragon Boat 

Team (Winnipeg) 

• Miles to Go Healing Circle - Six Nations (Ontario) 

• New Brunswick Breast Cancer Network 

• Organisation québécoise des personnes atteintes de cancer 

• Prince Edward Island Breast Cancer Support Group 

• ReThink Breast Cancer 

• Sauders-Matthey Cancer Prevention Coalition 

• Sentier nouveau Inc. 

• Sister to Sister: Black Women’s Breast Cancer Support Group 

(Halifax, NS) 

• Soli-Can 

• The Young and the Breastless 

• Virage, Hôpital Notre-Dame du CHUM 

Key Partners in Other Sectors 

• Amyotrophic Lateral Sclerosis Society of Canada (ALS) 

• Anemia Institute of Canada 

• Canadian Health Coalition 

• Canadian Health Network 

• Canadian Hospice Palliative Care Association 

• Canadian Organization for Rare Disorders 

• Canadian Prostate Cancer Network/National Association of 

Prostate Cancer Support Groups 

• Canadian Science Writers’ Association 

• DisAlbed Women’s Network Ontario 

• Epilepsy Canada 

• Early Prostate Cancer Diagnosis Ontario 

• HPV and Cervical Health Society 

• National Council of Jewish Women of Canada 

• National Council of Women of Canada 

• Newfoundland and Labrador Women’s Institutes 

• Ontario Health Promotion Project 

• Ottawa Health Coalition 

• Parent Action on Drugs 

• Quality End-of-Life Care Coalition 

• Women’s Centre of Montreal 

• Women, Health and Environments Network 

• Women and Rural Economic Development 

International Partners 

• National Breast Cancer Coalition (Washington, D.C.) 

• Philippine Breast Cancer Network 

CBCN is represented on the following groups 

• Best Medicines Coalition 

• Canadian Breast Cancer Research Alliance (CBCRA) 

• Canadian Cancer Action Network (CCAN) 

• Canadian Association of Psychosocial Oncology Ad-hoc 

Project Team for the project Creating a Community for 

Knowledge Exchange and Capacity Building 

• Canadian Breast Cancer Screening Initiative 

• Coalition priorité cancer au Québec 

• Community Capacity Building Committee, Canadian Breast 

Cancer Initiative, Public Health Agency of Canada 

• Episodic Disabilities Network 

• Metastatic Breast Cancer Global Advocacy Advisory Board 

• Provincial Cancer Control Strategy, Newfoundland and 

Labrador 

• Provincial Wellness Coalition Sub-committee for Healthy 

Living, Newfoundland and Labrador 

• Saskatchewan Cancer Advocacy Network

Network News - Winter/Spring 2010 - Canadian Breast Cancer ...

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