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

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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 Continued on Page 21 18 Network News Winter/Spring 2010
Informing Women of the Risks and Benefits of Genetic Testing for Hereditary Breast and Ovarian Cancer 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 ovarian cancer. 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 Network News Winter/Spring 2010 19
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: Knowledge is Power Interview with J
Page 21 and 22: Susan Armel is the senior genetic c
Page 23 and 24: BRCA1/2 Testing: Navigating Through
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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

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

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