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

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• 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 ovarian cancer. 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 . • 20 Network News Winter/Spring 2010
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 Continued from Page 18 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 . • Network News Winter/Spring 2010 21
Page 1 and 2: Canadian Breast Cancer Network Wint
Page 3 and 4: e part of a remarkable Board of Dir
Page 5 and 6: CBCN Board Members, staff and parti
Page 7 and 8: carry a BRCA mutation. If you would
Page 9 and 10: January 2009 and after several scan
Page 11 and 12: What is BRCA? By Dawna M. Gilchrist
Page 13 and 14: 5. Where possible, and if patient/f
Page 15 and 16: Hormone Therapy After Risk Reducing
Page 17 and 18: Knowledge is Power Interview with J
Page 19: Informing Women of the Risks and Be
Page 23 and 24: BRCA1/2 Testing: Navigating Through
Page 25 and 26: having surgery but is not currently
Page 27 and 28: the risk of hereditary cancer. A ri
Page 29 and 30: At present, we are recruiting women
Page 31 and 32: Familial Breast Cancer and No BRCA1
Page 33 and 34: ‘E’ is for Empowered - Are You
Page 35 and 36: Continued from Page 30 Top 10 Thing

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