Genetic Testing and Your Family Relationships

By on May 4th, 2016 Categories: Symptoms & Diagnosis

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.

It can be difficult. I remember a patient whose sister refused to get tested, and she was very concerned about her teenaged niece. As much as she tried to tell her sister it’s in the best interest of her and her children to test, her sister just really believed that whatever was going to happen was destined to happen, and she didn’t want to know about it.  The patient knew she couldn’t overstep her sister; that would ruin the relationship.

This is a situation when a support group can be helpful. We just validated this patient’s decision and helped her see that if anything bad did happen, it wasn’t her fault, and she should not live with immense guilt. She shouldn’t ask, “Why didn’t I push more? Why didn’t I do more?” She did what she could.

Often, multiple family members do get tested and have different results. What emotions does this tend to bring up, and how do people deal with them?

There are so many different emotions. Uncertainty. Guilt about testing negative or passing the mutation on to children. Resentment and anger toward family members who test negative. Feeling like a victim and asking, “Why me?”

With the negative emotions, people often ask themselves, “Why do I feel this way?” You have to realize it is all perfectly normal, and valid, even the bad feelings. You have to recognize your emotions whether they’re uncomfortable or not. People tend to get lost and think, “I’m a bad person if I wish it wasn’t me who has the mutation, but that it was her”— but it’s not true. You have to say, “OK, this is the emotion I have, and it’s OK to feel this way.” Recognize that emotion and let it be with you. You can’t stop it. You can’t push it down and you can’t make it go away, because our brains don’t work that way. The emotions are going to come back.

I guess this is what you call being mindful of our emotions. They may be unwanted, but you have to figure out what to do with them — maybe if you test positive you can educate your family, or if you’re negative you can help those who have the mutation.

What about sharing the information with your children? Any advice there?

In a way, it’s similar to telling your children you have cancer: You have to meet them where they are. If they’re older teens and closer to an age where they can be tested, then it becomes a more pressing issue. We had one patient who brought her teenaged daughter — she was maybe 16 or 17 — to the support group a couple of times. She was that open and thought her daughter could handle it.

Much more common was a sense of uncertainty: “I don’t know when I’m going to tell my children or what I am going to tell them.” But you know your own kids best, and you have to do what seems right for them.

If your kids are little, you have more time I think. But you also have to live with the fear and uncertainty that your child might have the mutation. It’s very hard. Just do the best you can to help them lead healthy lives, and then deal with the testing issue when they get older.

Is there any other advice you would give to women in terms of managing emotions related to genetic testing and the family?

Realize that if you’re in a relationship, your spouse or partner may be a big help to you. There were many husbands who attended the support group and they often were a great help with weighing information and making decisions. They tended to be pragmatic, wanting to learn everything and then make a decision based on the facts. They wanted to learn more and support their wives, but in the end they were helpful to all of us.

If you test positive for BRCA or another cancer-related mutation, visit our Discussion Board, Positive Genetic Test Results, to connect with others who can provide insight and share experiences.

If you have additional questions, the organization FORCE: Facing Our Risk of Cancer Empowered has a toll-free helpline that allows you to speak with a board-certified genetic counselor.

Kris Conner, MA, Contributing Writer--Kris has been writing about cancer and other medical conditions since 1998. Her first assignment involved creating content for the National Cancer Institute's patient-focused web site on clinical trials--and she was hooked. Since then, she has worked on projects for several cancer centers, educational web sites, and advocacy and professional groups, and she co-authored Ovarian Cancer: Your Guide to Taking Control (O'Reilly, 2003). Kris also works on marketing and development projects for hospitals and health systems, schools and universities, and nonprofit clients.

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