With the approach of Mother’s Day in the United States in May, followed soon after by Father’s Day, our thoughts often turn to our grandparents and parents, aunts and uncles. If your family has experienced multiple cases of breast cancer and possibly other types of cancer, you also may be thinking about your health history — and whether or not your family members might be good candidates for genetic testing. Testing can reveal whether or not an inherited mutation in genes such as BRCA1 or BRCA2 is responsible for the cancer(s); however, the testing process and results can sometimes cause emotional strain in families.
Saundra Weller, LCSW, OSW-C, manager of oncology navigation counseling at Inova Loudoun Hospital in northern Virginia, spent two years co-leading a support group for BRCA-positive women in her region. Breastcancer.org asked her to weigh in on some of the family issues faced by women who want to move forward with genetic testing.
What is the first piece of advice you would give to women who are thinking about bringing up genetic testing with their families?
Even before they start gathering a family history, they should figure out what they might do with their test results. It’s not just about having the test; it’s about knowing what to do if they test positive for the BRCA mutation or another mutation. This means asking for and reading information, meeting with a genetic counselor, consulting with FORCE [Facing Our Risk of Cancer Empowered], and maybe joining a support group. Anyone who is going to move forward with testing should take responsibility to do this first.
You mentioned gathering a family history, which is a typical first step toward determining whether genetic testing is appropriate. What are some of the emotional challenges women face in doing that?
Well, first there are often logistical challenges. Many of the women in my group found that an accurate family health history ended with their parents; beyond that it was lost because those older generations just didn’t talk openly about cancer. Others were adopted and had no information at all, and they experienced a real sense of loss in not having that knowledge.
Emotionally, though, it can be tough if you’re estranged from your siblings, as some group members were. Most eventually found someone they could reconnect with and start piecing together the history. In other cases, just bringing up the idea of the family history created difficulties because some family members were not at all interested in genetic testing. They were very closed up about it.
Talk more about that. How can women navigate the situation if they are interested in testing, but some family members are not?
Some women do find that their relatives simply don’t want to talk about it. Some family members might say, “You can get tested. You can do anything you want, but I don’t want to know.” My advice is to do everything you can to make sure your loved ones know what is happening in case they eventually want to get tested or their children do. Many women typically made a phone call or sent a letter acknowledging that their relative might not want to talk about it, but then included a brochure or some other information and offered to communicate more if they ever wanted to.
After that, you have to accept that everyone has a right to self-determination. Each person can talk about it or not. They can get tested or they don’t have to. Just do your “due diligence” with these family members — let them know what is going on, provide them with information, and you’ve done your job.
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