by Lisa Rezende, PhD
(lecturer in the Biochemistry Department at the University of Arizona)
Hereditary Cancer Research
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 Narod described some the latest unpublished results from his multinational breast cancer study of over 11,000 women with mutations in BRCA1 or BRCA2.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:
- A 12-year study of annual MRI screenings in women who carry BRCA1 or BRCA2 mutations found that 97% of their cancers were found in stage I; the 6-year survival rate for these women was 96%. Dr. Narod concluded that annual MRI scans reduced the risk of advanced breast cancer by 70%.
- BRCA1 or BRCA2 carriers who had prophylactic salpingo-oophorectomy but not prophylactic mastectomy had a 60% reduced risk of breast cancer. This risk reduction was found in both BRCA1 and BRCA2 mutation carriers and lasted for 15 years. Interestingly, risk reduction was also evident in women who had oophorectomy after natural menopause.
- BRCA1 or BRCA2 mutation carriers who used an oral contraceptive after age 20 did not have significantly increased risk of breast cancer. • Among BRCA1 and BRCA2 mutation carriers who were initially diagnosed with early stage (stage I or stage II) breast cancer, the risk for a second breast cancer diagnosis was observed, most often 10 years or longer after the initial cancer, in:
- 60% of women who had a lumpectomy
- 47% of women who had a unilateral mastectomy
- 2% of women who had a bilateral mastectomy
- Among 455 BRCA1 and BRCA2 mutation carriers who had small (0-2 cm) breast cancers that had not spread to the lymph nodes, survival rates were significantly higher in women who had chemotherapy. Dr. Narod concluded that, “All women with breast cancer and a BRCA1 or BRCA2 mutation are candidates for chemotherapy.”
Communicating with Family Members
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:
- Communicate directly with family members rather than relying on a third party
- Identify points of contention
- Maintain privacy but don’t keep secrets from family members
- Identify solutions to conflict
- Balance the need for individuals to make their own decisions with the need for them to be supported by loved ones
The session closed with recommendations for:
- finding genetic counselors (National Society of Genetic Counselors)
- receiving genetic counseling over the phone (Genetic Counseling through Informed DNA)
- locating professionals who can help (Find a Social Worker, Therapist Locator)
Mental Makeovers and Savvy Insights
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.
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