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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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

<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>

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