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

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