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

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process. They discuss their options and implications of genetic testing. As well, these interactions are the source of new research questions. For more information about the Familial Breast Cancer Research Institute, please visit: http://www.womensresearch.ca/ programs/genetic_cancer.php. • References 1 Significant Family History is defined as having either two female relatives diagnosed with breast cancer under 50 OR three (or more) female relatives diagnosed at any age on the same side of the family (within first and second degree relatives). 2 Your individual risk of developing breast cancer may vary from this number, and as part of this study, we hope to better understand the influence of family history on the risk of developing breast cancer. Jillian Alston is a second year medical student at the University of Toronto. She is completing the Comprehensive Research Experience for Medical Students Distinction and Research Program at the Familial Breast Cancer Research Unit. She has a Bachelors of Health Sciences Honours degree from McMaster University. Jillian hopes to continue research throughout her career as a medical doctor. Dr. Steven Narod is a Tier I Canada Research Chair in Breast Cancer. He is a professor in the Department of Public Health Sciences at the University of Toronto. Research and Academic Interests: Dr. Narod conducts longitudinal studies of women from families with and without genetic mutations related to breast cancer. He is currently focused on translating our emerging knowledge about hereditary cancer into more effective strategies for the prevention and management of breast and ovarian cancer. He is also interested in delineating the gene/environment interactions that underlie hereditary breast cancer. This work may eventually be used to identify potential modifiers of cancer risk in highprevalence groups. He is currently principal investigator on a number of studies looking at risk factors associated with hereditary breast and ovarian cancer, investigating the role of BRCA2 mutations in ovarian cancer, and investigating the contributions of CHK2 gene mutations to breast cancer risk. He also participates as a co-investigator on a wide range of hereditary cancer studies conducted by his students and international colleagues. Willow’s Program for Hereditary Breast and Ovarian Cancer Willow Breast Cancer Support Canada offers four programs for women at risk for Hereditary Breast and Ovarian Cancer (HBOC): • Peer Support Program • Personalized HBOC Information Packages • How to connect with others like yourself at www.willow-talk.org • How to start your own BRCA 1 and BRCA 2 Support Groups Peer Support Program Willow’s Peer Support Team answers a wide range of questions related to Hereditary Breast and Ovarian Cancer. The Peer Support Team provides support and information that will help you to better understand a positive BRCA gene mutation diagnosis and related risk management options. Willow can help by offering suggestions such as how to talk to your family members about their potential risk of having a BRCA 1 or BRCA 2 gene mutation. Willow also offers free interpreter services for individuals wishing to speak in their language of choice. All calls are fielded by trained breast cancer survivors. Personalized HBOC Information Packages Willow will provide you with current, credible and clear information on all topics related to HBOC. Willow’s health librarian works with the Peer Support Team to research your specific questions and to send you a free personalized information package, either by e-mail or by post. Join www.willow-talk.org Willow’s online social networking community connects Canadian women who are at high risk for breast cancer. Willow-talk.org provides a forum to share your experience and exchange information. New HBOC Initiatives for 2010 Thanks to a grant from the Public Health Agency of Canada, Willow is developing programs for high risk women and their families. As part of this new initiative, there is a comprehensive Canadian HBOC-specific website containing relevant information, resources and online networking opportunities for Canadians affected by a hereditary diagnosis. Willow is also developing a series of targeted, diagnostically appropriate fact sheets on topics relevant to high risk women. • Willow Breast Cancer Support Canada is a breast cancer support organization that provides free and accessible community-based, survivor-driven information and emotional support services for those impacted by breast cancer. For more information please call Willow at 1-888-778-3100 or visit www.willow.org . 32 Network News Winter/Spring 2010
‘E’ is for Empowered - Are You an e-patient? By Colleen Young Do you look for health information on the Internet and discuss what you find with your doctor? Have you ever read a posting on a discussion forum and thought, “Yeah, I have that side effect too. I’m going to talk to my doctor about it?” Then you are an e-patient – equipped, enabled, empowered and engaged in your health and your healthcare decisions. According to Wikipedia, “e-Patients are health consumers who use the Internet to gather information about a medical condition of particular interest to them. The term encompasses both those who seek online guidance for their own ailments and the friends and family members (e-Caregivers) who go online on their behalf. e-Patients report two effects of their online health research: “Better health information and services, and different (but not always better) relationships with their doctors.” Patients no longer want to receive health care passively. We want access to information and to our medical records, and we want to connect and collaborate with our peers. Online information, tools that organize health data (Google Health) and social networking tools (discussion forums, blogs, wikis, Facebook, Twitter, etc.) are letting us do this in ways never before possible. And, healthcare providers are beginning to understand that patient knowledge counts. The authors of the paper e-Patients: How They can Help us Heal Healthcare acknowledged that healthcare providers: • Should recognize that e-patients are valuable contributors to health care • Have overestimated the hazards of imperfect online health information. Patients are capable of gathering quality health information online • Have underestimated a patient’s ability to provide useful online resources • Can no longer go it alone. The most effective way to improve healthcare is to make it more collaborative Gone are the days when the doctor was the only source of medical information and care. As cancer survivor and e-patient, Dave deBronkart (http://patientdave.blogspot.com/) states, “Ushering in the era of the participatory patient doesn’t mean that ‘doctor knows best’ has shifted to ‘patient knows best.’ The new patientdoctor relationship is a collaborative partnership.” Collective knowledge and experience shared online is valuable. Healthcare providers need to embrace the wisdom of community knowledge. Together we can build confidence in participatory medicine – a cooperative model of healthcare that encourages and expects the active involvement of patients, caregivers and healthcare providers. Want to be an empowered patient? You can take an active role in your cancer care. Here are a few tips to get you started. • Gather information When using the Internet, make sure the information is accurate, objective and trustworthy. Websites like www.CBCN.ca and www.SharingStrength.ca are good places to start. • Tap into community knowledge Breast cancer support groups and online communities are a great place to ask questions and get answers. Check out the online forums at: Breast Cancer Action Nova Scotia (http://bca.ns.ca); www.breastcancer.org; Breast Cancer Now What? (www.breastcancernowwhat.ca); Caring Voices (www.caringvoices.ca); Willow- Talk (www.willow-talk.org). • Keep track of your health record Maintaining an electronic or hard copy of your own health record can be useful when talking to your cancer care team and coordinating your care. For more information on health records, please visit www.SharingStrength.ca. • Talk to your health care provider Tell your doctor that you want to take an active role in your care. Ask questions. Recommend websites to your cancer care team. • Colleen Young is a medical oncology writer who takes particular interest in writing clear, easy-to-read literature for cancer patients. While not a cancer survivor herself, Colleen advocates for patients, survivors and caregivers. She works closely with cancer centres and support organizations to help ensure that those touched by cancer get the information and support they are looking for through the printed word. Colleen’s role on SharingStrength helps her stay connected with the breast cancer community. Along with moderating the discussion forums on SharingStrength, she raises and discusses important community issues in the Editor’s Feature and Blog. To follow Colleen Young and SharingStrength on Twitter, please visit http://twitter.com/ SharingStrength. Network News Winter/Spring 2010 33
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
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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 and 20: Informing Women of the Risks and Be
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 29 and 30: At present, we are recruiting women
Page 31: Familial Breast Cancer and No BRCA1
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