Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Lisa Rezende, PhD
(lecturer in the Biochemistry Department at the University of Arizona)
The Hereditary Cancer Research Panel featured a presentation by Dr. Steven Narod, Director of the Familial Breast Cancer Centre in Toronto. Dr. Narod described some the latest unpublished results from his multinational breast cancer study of over 11,000 women with mutations in BRCA1 or BRCA2. His research follows these women over many years, providing data about cancer risks, outcomes, and the efficacy of different risk management and treatment options. Dr. Narod discussed the following observations:
Dr. Lindsey Hoskins, post-doctoral fellow at the National Cancer Institute, and Dr. Allison Werner-Lin, Assistant Professor at the Silver School of Social Work at New York University, addressed the challenging issue of how to discuss cancer risk with family members.
The speakers provided strategies for individuals, families, and health providers to support communication within families so that everyone understands their family health history and can decide for themselves whether or not to pursue genetic testing, and make decisions based on their results. Disclosure can be a process of giving information in stages rather than all at once. Conversations with loved ones should focus on objective information about cancer risk in language everyone can understand, and personal opinions should only be given when asked for. Drs. Hoskins and Werner-Lin encouraged attendees to provide relatives with printed materials from health care professionals to give them a tangible and credible object on which to focus their attention. Communication should be carefully tailored, recognizing that both parties in a conversation have unique needs and considerations based on their age, health history, risk tolerance, family structure, etc. Regardless of the decisions they make, all family members want to be supported and heard.
Addressing the fear about how the information will be received, the speakers described a range of possible negative reactions, including guilt, blame, burden, anger, inaction, invalidation, and sadness. Family members may not react in the same way; they may choose different actions even when they hear the same genetic information. Drs. Hoskins and Werner-Lin reminded attendees to actively listen to family members? reactions, provide support, and be prepared to refer them to qualified experts. They recommend five strategies for resolving conflicts when family members disagree:
The session closed with recommendations for:
In her light-hearted yet moving session, Regina Savage reflected on how life before cancer helped her learn to emotionally cope with cancer and treatment after her diagnosis at age 36. She shared these insights from her inspirational book, Mirror Makeovers and Savvy Insights for the Everyday Gal Surviving Cancer and Baldness with a Sense of Humor.
One day after losing her hair from chemotherapy, Regina began drawing pictures of different hairstyles on her bathroom mirror. These 'mirror makeovers' helped her through treatment. The hair she drew each day varied based on her mood: from a pretty blond wig complete with a bright pink bow to a Medusa-like head of snakes, to a cheerleader to root her on as she completed treatment. These reflections provided her with an outlet for her emotions.
After cancer, Regina embraced life and reached out to others facing cancer, demonstrating her mirror makeovers to cancer support groups. This work inspired her to write her book and produce a music video for women undergoing treatment. The video follows a woman from diagnosis through treatment, and highlights how the support of others brought light and color back into her world. When this video was screened at the FORCE conference, there was not a dry eye in the audience.