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Family Emotions During Genetic Testing

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As you and possibly other family members have genetic testing and receive your results, you can experience a range of emotions and relationship changes. In some cases, family ties may grow stronger. Even if genetic testing introduces some strains, relationships should come through just fine if they were fairly close before. Weak or estranged relationships could grow more distant. Every family is different, but it’s good to be prepared for issues that may arise.

The first person with breast cancer in the family to be tested for a suspected genetic mutation (or mutations) can feel an especially heavy burden. If you’re in this position, it can seem like so much depends on your results. Testing negative for BRCA1, BRCA2, and perhaps other breast cancer-related mutations may bring a sense of relief, as it suggests that the cancer in your family can’t be traced to any of the known mutations. Usually if that happens, no one else in the family would need to be tested. However, testing negative can also bring feelings of fear and even disappointment: Perhaps you and your relatives were hoping for some explanation for the cancer in your family.

If you test positive for a cancer-related mutation, you might worry about what this means for your relatives, who could also have inherited the mutation. You might feel as if you’re the one who brought this upon the family, even though you know that it’s just a matter of genetics. Family members might resent the fact that they, too, could be at risk and need to weigh the pros and cons of genetic testing.

If you haven’t had cancer but suspect a mutation runs in your family, it can sometimes be challenging to get a relative with cancer to have the test first, says Sue Montgomery, RN, BSN, OCN, GCN, a genetic nurse navigator with the Family Risk Assessment Program at Fox Chase Cancer Center in Philadelphia, PA. “We do hear stories like, ‘I ask her every time I see her,’ ‘I can’t ask her anymore,’ ‘She is getting angry at me.’ It can be a source of family discord. There have been cases where we just go ahead with the testing based on family history.”

“Sometimes we run into someone who says, ‘Why do I need testing if I’ve already had cancer?,’” says Andrea Forman, MS, LCGC, a genetic counselor at Fox Chase Cancer Center. “We have a bullet-point information sheet that explains why their children and other relatives might be at risk. For parents especially, if we can shift the focus from feeling guilt about possibly passing on a gene mutation to empowerment for their children, that really helps. I recently had a patient who was reluctant to do the testing until I told her what it could mean for her daughters. And she gave her blood sample that very same day.”

If it becomes clear that there is a mutation causing the cancer in your family, a number of feelings and emotions can arise as relatives get tested and learn their results:

  • Guilt: Those who test positive might feel a sense of guilt about passing along the mutation to children. Those who test negative might feel guilty for a different reason: “Why was I spared when my relatives were not?” They might not know what to say to others who tested positive or how best to support them. “I have definitely faced this with sisters, where the one who tests negative is asking, ‘What can I do for my sister now that she’s tested positive?,’” says Andrea Forman. “So I might give her a responsibility: ‘Be there when she needs you, help her understand this, and keep on track with screenings or whatever she decides to do.’”
  • Relief: It’s normal to feel relieved and even happy if you did not inherit the mutation. It’s also normal to feel happy for parents, siblings, and other family members who test negative. Try to leave space for celebration about this, even as others might get some bad news.
  • Resentment: Those who test positive might find themselves resenting those who test negative (“Why me and not them?”). This could create some distance among siblings and other relatives. If a relationship was already strained, those strains can worsen. In turn, those who test negative for the mutation might sense some hard feelings from those who tested positive. “These are all normal human emotions,” notes Andrea Forman. “It’s OK to have them. It is just important not to let them take over the relationship.”
  • Division within the family: Family members who test positive for a cancer-related mutation face similar worries about the future and what to do about their results. This shared experience can pull them closer together. As a result, those who tested negative could feel left out. If family gatherings suddenly become a place where cancer risk dominates the conversation, this might be helpful for some and hard on others. There also can be division between those who go through with testing and those who don’t.

    “I have one family of five sisters where two tested positive, two tested negative, and one does not want to be tested. She is just not ready for it,” says Andrea Forman. “Sometimes something else has to happen for someone to be ready — like another family member gets diagnosed, or they’re approaching the age at which their mom or their sister was diagnosed. When the actress Angelina Jolie went public with her decision, that inspired a lot of women to finally move forward. Everyone is different.”
  • Fear/anxiety: All family members can experience a sense of fear about the future, whether they test positive or not. Everyone is likely to be concerned about the risk of some relatives developing cancer and what this means for their children and future generations. Even those who test negative can continue to be anxious about their own health, notes Andrea Forman: “If you’ve grown up with cancer in the family and always thought you would get it, too, being told you do not have that risk can be hard to believe. It’s difficult to give up that thinking when it has been part of your life for so long.”
  • Changes of heart: As testing progresses, some relatives might change their minds about having genetic testing or sharing their results. After some family members test positive, others may decide they just don’t want to know if they have a cancer-related mutation. Or they might decide not to find out their results — or to get them but not share them with the family. Everyone has the right to change his or her mind, but sudden changes of heart can lead to hard feelings.

Some people also have a hard time sharing their results with certain relatives. Maybe there is someone they don’t know that well. Or perhaps they suspect that a certain person will be upset by the information or won’t react well. It can be hard to know what to do in these situations.

If your family is dealing with any of these issues, talk to your genetic counselor (or physician or nurse, if that is who is advising you). Genetic counselors have lots of experience in helping families navigate these situations. They also are likely to know about family counselors who can advise you if more in-depth help is needed.

Andrea Forman offers some advice: “If a woman is struggling with a certain relative’s decision, I try to let her know it’s OK if this person doesn’t have the testing. It’s not her fault, it's not as if she failed. I encourage her to have her sister or mom or whoever it is just come and have a conversation with me to learn more about it. Meeting with me does not mean she is agreeing to be tested. My goal is to give them the information they need to make a decision. And in some cases the timing isn’t right or the person just isn’t ready. That is valid, too.”

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