Network News - Winter/Spring 2010 - Canadian Breast Cancer ...
Network News - Winter/Spring 2010 - Canadian Breast Cancer ...
Network News - Winter/Spring 2010 - Canadian Breast Cancer ...
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<strong>Network</strong> <strong>News</strong><br />
Volume 14, Number 1, <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong><br />
ISSN: 1481-0999 Circulation: 6,500<br />
PUBLICATIONS MAIL AGREEMENT NO. 40028655<br />
RETURN UNDELIVERABLE CANADIAN ADDRESSES TO<br />
CANADIAN BREAST CANCER NETWORK<br />
331 COOPER ST, SUITE 300, OTTAWA ON K2P 0G5<br />
E-mail: cbcn@cbcn.ca<br />
<strong>Network</strong> <strong>News</strong> is published by the <strong>Canadian</strong><br />
<strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> (CBCN) to provide<br />
the breast cancer community with up-to-date<br />
and understandable information on issues at<br />
the national level, to promote education and<br />
awareness, and to highlight the concerns of<br />
<strong>Canadian</strong>s affected by breast cancer.<br />
We would like to thank the individuals who<br />
wrote articles and the breast and ovarian cancer<br />
support groups that provided information. We<br />
welcome your ideas, contributions and letters,<br />
subject to editing and available space. The<br />
articles in this issue do not necessarily represent<br />
the views of CBCN but are the opinions of the<br />
authors. CBCN gives permission to copy with<br />
attribution.<br />
<strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong>,<br />
331 Cooper Street, Suite 300,<br />
Ottawa, ON K2P 0G5. Tel.: (613) 230-3044.<br />
1-800-685-8820. Fax: (613) 230-4424.<br />
E-mail: cbcn@cbcn.ca. Website: www.cbcn.ca.<br />
Editor: Jackie Manthorne<br />
Editorial Committee: Mona Forrest,<br />
Jackie Manthorne<br />
Guest Editor: Colleen Lyle<br />
Contributors: Cathy Ammendolea; Jackie<br />
Manthorne; Kelly Metcalfe, RN, PhD; Lorna<br />
Marshall; Dawna M. Gilchrist, MD, FRCPC,<br />
FCCMG, DHMSA; Hereditary <strong>Breast</strong> and Ovarian<br />
<strong>Cancer</strong> Foundation; Jodi Wilkie, B.Sc. Pharm.;<br />
Jane Jancovic; Hereditary <strong>Breast</strong> & Ovarian<br />
<strong>Cancer</strong> Society of Alberta; Susan Armel, MS,<br />
CGC Genetic Counsellor; Rochelle Demsky, MS,<br />
CGC Genetic Counsellor; Fran Turner; Mary Jane<br />
Esplen, PhD, RN; Lynda McHenry; Melissa A.<br />
Vloet, PhD Candidate; Mario Capelli, PhD, C.<br />
Psych.; Steph H.; Jillian Alston, MD Candidate;<br />
Willow <strong>Breast</strong> <strong>Cancer</strong> Support Canada; Colleen<br />
Young<br />
Translation: Martin Dufresne; Francine Lanoix;<br />
Jeanne Duhaime; Reine Daas; Véronique Lacroix<br />
Cover Photo: Lynda McHenry, contributor,<br />
enjoying time with her three daughters. Clockwise<br />
Lynda, Leah, Sara, Lana<br />
Staff: Jackie Manthorne, Executive Director,<br />
jmanthorne@cbcn.ca; Mona Forrest, Director<br />
of Development, mforrest@cbcn.ca; Jenn<br />
McNeil, Project Coordinator, jmcneil@cbcn.<br />
ca; Tiffany Glover, Public Relations and<br />
Government Relations Manager, tglover@cbcn.<br />
ca; Colleen Lyle, Communications Manager,<br />
clyle@cbcn.ca (on leave); Heather Sullivan,<br />
Communications and Information Coordinator,<br />
hsullivan@cbcn.ca; Sparrow McGowan, Web<br />
Coordinator, smcgowan@cbcn.ca; Maureen Kelly,<br />
Receptionist, maureen@cbcnc.ca; Judy Proulx,<br />
Receptionist, jproulx@cbcn.ca; Sandie Lessard,<br />
Bookkeeper, sandie@cbcn.ca<br />
President’s Report<br />
By Cathy Ammendolea<br />
I<br />
am very proud to serve as the president of <strong>Canadian</strong><br />
<strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> (CBCN). I am also proud<br />
to dedicate my first President’s Report to the<br />
memory of “Vi,” a woman who introduced me to the<br />
issue of breast cancer. In 1980, I began working as an<br />
administrator for a small medical office. I was 23 years Cathy Ammendolea,<br />
President of <strong>Canadian</strong> <strong>Breast</strong><br />
old and a young mother of a three-year-old daughter. <strong>Cancer</strong> <strong>Network</strong><br />
During my first day on the job I was welcomed by all<br />
the members of the office. Vi introduced herself, greeted<br />
me with a cheery smile and said, “Hi, my name is Vi, short for Violet. I am the nurse<br />
practitioner. It is a pleasure to meet you.” Then she added, “Oh, by the way, I’m<br />
wearing a wig because I am currently on chemo treatment for breast cancer.”<br />
My heart skipped a beat. Vi had just spoken a language that was unfamiliar to<br />
me. Nobody in my family had ever talked about cancer so openly. <strong>Cancer</strong> was<br />
discussed in a soft whisper and in very brief conversation. I was saddened to<br />
meet such a warm, gentle and bright lady who was in fact dying of breast cancer.<br />
I couldn’t grasp the idea of how her children would go on without her.<br />
Vi’s experience with breast cancer was the beginning of a journey which led me<br />
to where I am today. In 2000, I myself was faced with a breast cancer diagnosis.<br />
However, somehow I felt that I had been through this before. Suddenly it came to<br />
me: The gentle reminder of a woman who was ahead of her time in discussing her<br />
disease with such ease. Not even realizing it at the moment, I adopted her style<br />
and courage. I utilized my personal experience with Vi to educate myself about<br />
cancer. Immediately after my treatments, I became a peer mentor to other women<br />
who were newly diagnosed with breast cancer. I became an advocate, attended<br />
continuing education conferences, and worked as a psychosocial volunteer. So<br />
many doors have opened since my diagnosis: Education, awareness, advocacy,<br />
support groups and much more. Now, CBCN has given me the opportunity to<br />
In this issue:<br />
Executive Director’s Report ................4<br />
Defining BRCA Genes ...................6<br />
My Story ............................8<br />
View CBCN Webinars Online .............10<br />
What is BRCA? .......................11<br />
In Edmonton, How to Obtain Referral to<br />
the Edmonton <strong>Cancer</strong> Genetics Clinic .......12<br />
The Hereditary <strong>Breast</strong> and Ovarian <strong>Cancer</strong><br />
Foundation Third International Symposium<br />
on BRCA in Montreal in October 2009 ......14<br />
Hormone Therapy After Risk Reducing<br />
Oophorectomy – Helpful or Harmful? .......15<br />
Knowledge is Power ...................17<br />
Hereditary <strong>Breast</strong> & Ovarian <strong>Cancer</strong> Society<br />
of Alberta 8th Annual Fall 2009 Conference ...18<br />
Informing Women of the Risks and Benefits<br />
of Genetic Testing for Hereditary <strong>Breast</strong> and<br />
Ovarian <strong>Cancer</strong> .......................19<br />
About Ovarian <strong>Cancer</strong> Canada ............21<br />
A Rose Grows: Fighting <strong>Cancer</strong>, Finding Me ...22<br />
Obituary – Marg Campbell ...............22<br />
BRCA1/2 Testing:<br />
Navigating Through the Various Reactions:<br />
All Parts of the Proces ..................23<br />
Scarred, Single and Sexy ................26<br />
The Psychobiological Risk and Resilience<br />
of Young Families Affected by Maternal<br />
<strong>Breast</strong> <strong>Cancer</strong> ........................28<br />
Top 10 Things Young Previvors (Probably)<br />
Don’t Want to Hear ....................30<br />
Familial <strong>Breast</strong> <strong>Cancer</strong> and No BRCA1/2<br />
Mutation? ...........................31<br />
Willow’s Program for Hereditary <strong>Breast</strong><br />
and Ovarian <strong>Cancer</strong> ...................32<br />
‘E’ is for Empowered - Are You an e-patient? . .33<br />
CBCN: Here for You ....................34<br />
CBCN’s Website Friends Remembered Pages . .34<br />
Members, Friends, Funding Partners and<br />
Corporate Friends .....................35<br />
<strong>Canadian</strong> <strong>Breast</strong> <strong>Cancer</strong> <strong>Network</strong> Partners ....36<br />
2 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>