Genetic Testing and Family Relationships
Being tested for a genetic mutation linked to a higher risk of breast cancer isn’t just about determining your own personal risk of developing cancer. Your results can affect the rest of your family, too.
Family members may react to the results and even the process of genetic testing and counseling in a variety of ways. Some may be supportive, while others may be uncomfortable with the process. Some may want to be tested themselves, while others may decide they don’t want to know this information.
Challenges of gathering a family history
If you have decided to get genetic testing, it makes sense to find out who has been diagnosed with cancer on both sides of your family. It’s best to work with a genetic counselor who can help you understand the pattern of cancers in your family. You could also work with a doctor or nurse who is knowledgeable about heredity and cancer.
Some relatives may want to know what their cancer risk is and gladly get involved. But you also could encounter some resistance for a variety of reasons:
You may need to contact relatives you don’t know very well or who are out of touch with or even estranged from you or your family. The subject of genetic testing can bring some families closer and divide others. Relatives who you haven’t been historically close with may resent hearing from you only to learn that it’s about cancer risk. Starting the process of researching your family history can raise all kinds of difficult emotions. Additionally, if you were adopted and don’t know who your birth parents are, or if you grew up knowing only one of your biological parents, this process may bring up feelings of loss and distress.
Some family members may be guarded or even feel angry about having to answer very personal questions. People didn’t always talk openly about being diagnosed with cancer. If they did, they told only their immediate family members. Relatives may not necessarily want to share details about their diagnosis or their own family history for a variety of personal reasons.
Some relatives may question why you want to get genetic testing. Not everyone agrees that it makes sense to find out whether you have a high risk of developing cancer. Some relatives simply would prefer not to know. Other relatives may resent having to deal with fears they wouldn’t have faced otherwise. Still others may be struggling with the fact that cancer runs in the family. Whatever their reason for resisting genetic testing, some family members may simply choose to not get involved.
If you face resistance from any family members, it’s important to respect their feelings and privacy.
“Give it a shot, at least once, even if you think it’s awkward or you haven’t talked to this person in what seems like forever. Nowadays people are connected in so many ways: Facebook, email, social media. Just give it a try and do what it takes to get them the information,” says Andrea Forman, MS, LCGC, a licensed genetic counselor at St George’s University Hospitals NHS Foundation Trust, U.K.
“If it’s a relative you’re closer to and you’re trying to convince them it is important, just give them a few nudges,” she adds. “Certainly, you don’t want them to dig their heels in. At least you’ll know you’ve done what you can do, and forgive yourself for the fact that family is not always going to take your advice.”
You may want to consider sending relatives a brief letter or email with some educational information about genetic testing and the reason you want to be tested. Once you have your results, it may be best to let your relatives know, regardless of whether they want to be tested themselves. It also may be a good idea to give them your genetic counselor’s contact information. After all, meeting with a professional to get more information does not mean they have to go through with testing. Try to keep the lines of communication open.
Family emotions during the genetic testing process
A positive genetic test result can cause changes in some family relationships. In some cases, family ties may grow stronger. But the subject of genetic testing can cause strains in some families, and estranged relationships could grow more distant. Every family is different.
It’s possible for the first person diagnosed with breast cancer in a family to feel especially burdened after getting tested for any suspected genetic mutations. For people in this position, it can seem like so much depends on their results.
If you haven’t been diagnosed with cancer but suspect a cancer-related mutation runs in your family, it can be challenging to get a relative who has been diagnosed with cancer to be the first in the family to get genetic testing. “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,” says Susan Montgomery, RN, BSN, OCN, GCN, a genetic nurse navigator at Fox Chase Cancer Center in Philadelphia.
“Sometimes we run into someone who says, ‘Why do I need testing if I’ve already had cancer?’ We have a bullet-point information sheet that explains why their children and other relatives might be at risk,” says Andrea Forman. “For parents, especially, if we can shift the focus from feeling guilty 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.”
When people learn that a cancer-related mutation is present in their family, they may feel a number of things:
Guilt: People with a positive genetic test result may feel guilty about possibly passing along a cancer-related mutation to their children. It’s also possible for people with a negative genetic test result to feel guilty for being spared when others in their family have either tested positive or have been diagnosed with breast or ovarian cancer. It can be difficult to figure out how to offer support to family members who have tested positive. “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?’ 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,’” says Andrea Forman.
Relief: It’s normal for people to feel relieved and even happy if they learn they haven’t inherited a cancer-related mutation. It’s also normal for people to feel happy for parents, siblings, and other family members who also test negative. Try to leave space to celebrate this happy news, even if others get bad news.
Resentment: People who test positive may resent relatives who test negative, and those who test negative may sense hard feelings from those who test positive. It can create some distance among siblings and other relatives. Relationships that were already strained may worsen. “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 bring them closer together. But family members who tested negative might feel left out. It can be difficult for relatives who tested negative if family gatherings suddenly become a place where cancer risk dominates the conversation. And there may be friction between relatives who go through with testing and relatives 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 and anxiety: Regardless of whether they test positive or negative, family members can experience a sense of fear about the future. It’s normal to worry about relatives who are at risk for developing cancer or what a positive test result may mean for future generations. Even people who test negative can feel anxious about their own health. “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,” notes Andrea Forman. “It’s difficult to give up that thinking when it has been part of your life for so long.”
Changes of heart: Sometimes relatives can change their minds about getting genetic testing or sharing their results. Relatives may decide not to get tested even after someone else in the family gets a positive test result. Or they may decide not to get their results after being tested. They may even decide to not share their results with the rest of the family. Although sudden changes of heart can sometimes lead to hard feelings, it’s important to remember that people have a right to change their minds.
It’s very helpful to talk to your genetic counselor if your family is having difficulty accepting your decision to get genetic testing. Genetic counselors can help families navigate difficult conversations and also are likely to know about family counselors who can advise you if you need more in-depth help.
“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,” advises Andrea Forman.
Family relationships after genetic testing
Once you learn there is a cancer-related mutation present in your family, you have some important decisions to make about what to do next. People with an increased risk of developing breast or ovarian cancer can take steps to protect themselves. They can:
have more frequent screenings
take risk-reducing medications
have surgery to remove the breasts, ovaries, or both to lower cancer risk (called prophylactic surgery)
If you have already been diagnosed with breast cancer, you may be eager to see your relatives do everything they can to protect themselves. But it’s important to remember that everyone makes sense of a positive test result their own way. Some relatives may choose to do nothing, either because they’re not that concerned or they’re simply not ready to take action yet. Younger people with a BRCA mutation may think that having surgery to remove the breasts or ovaries is drastic — which can cause conflict with relatives who see surgery as a “must-do.”
You may also find that family members are influenced by their doctors. And doctors have different opinions about managing risk. Some doctors may be comfortable following high-risk people with screenings and risk-reducing medications such as tamoxifen. Other doctors may lean more heavily toward preventive (prophylactic) surgery.
It may make sense to remind your relatives that there are various options to reduce any risk of cancer they may have. You also can check in with family members who have refused genetic testing to see if they have had a change of heart. Andrea Forman notes that some of her patients have mailed their test results and a copy of the family tree to relatives, so they have a full picture when considering or reconsidering genetic testing. Still, it’s important to accept your family’s choices and for them to respect yours.
Sharing genetic information with children and young adults
People who test positive for a cancer-related mutation have a 50-50 chance of passing the mutation to any children they might have. It can be difficult to figure out when and how to share this news. You have to be at least 18 years old to get genetic testing. Even then, doctors don’t recommend intervention for those who test positive until they are at least 25 years old. It may make sense to wait until your child is an older teenager to speak to them about genetic testing.
Here are some tips you may find helpful:
Think about your children’s ages, personalities, and maturity levels. Children who worry a lot or are anxious may not get any benefit from knowing that a cancer-related mutation runs in the family. However, children who take things in stride could be just fine with it — especially if they are aware that many relatives in the family have been diagnosed with cancer. Age matters, too. It may make sense to tell a 16-year-old, rather than a 10-year-old. Or you may decide it’s better to wait until children are 18 or finished with their education.
If your kids suspect something is going on, it may make sense to tell them. Children often can sense when there is an issue in the family. Your child may ask questions if they are aware that various family members have been diagnosed with cancer. They also may be curious about your doctor appointments or why relatives have had surgery. If you find that it’s best to have an open discussion with your child, it’s best to put everything in simple terms they can understand.
Make sure you’re ready to talk to your children. It can be upsetting to learn that you have tested positive for a cancer-related mutation. In these cases, it may be helpful to speak with a genetic counselor, a mental health professional, or a peer support group. FORCE has a support section where you can connect with other high-risk people online, over the phone, or in person.
It’s a good idea to practice what you’d like to say. Terms like “genetics,” “heredity,” “mutation,” and even “cancer” can be difficult to explain. It’s a good idea to ask your genetic counselor and other relatives for advice on how to best explain the genetic mutation that runs in your family and what it means for cancer risk. For example, some people may find it helpful to think of a cancer-related mutation as a “misspelling” or “mistake” in a gene that can cause the growth of unhealthy cancer cells. The important thing is to keep your explanation simple and to the point.
Be reassuring and upbeat. Knowing that you and the people you love are at risk for cancer can be scary. Try to help your kids understand that having this information can be empowering. Knowing that you have tested positive for a cancer-related gene mutation can help you understand why certain members of the family have been diagnosed with cancer. And having this knowledge also means that you can all take steps to lower your risk.
Check on your kids after you tell them. Regardless of how old they are, children can be anxious about their health after learning they may have a cancer-related mutation. Pre-teens, teens, and young women are especially vulnerable to worries about breast cancer as their breasts change and mature. It’s important to keep the lines of communication open so children feel like they can come to you with additional questions or concerns. It also may be helpful to speak with your children’s doctor and your genetic counselor.
Remember that this conversation can take place over time. It’s normal to keep having conversations about your genetic testing results as your children get older. If it doesn’t go perfectly the first time, there are many opportunities to speak again.
The National Society of Genetic Counselors published Talking About BRCA in Your Family Tree, which you may find helpful. Although the booklet’s focus is about BRCA, its advice is relevant to families with any of the other inherited gene mutations that can increase breast cancer risk.
Sometimes families can disagree about whether children should be told about genetic testing and cancer risk. The subject can raise some delicate issues. For example, if you have brothers or sisters who haven’t told their children yet but your kids know, conversations can get tricky. As children in your family grow older, you can talk to their parents again about cancer risk in the family. As young adults, they may want to look into genetic testing and take steps to reduce their risk if they test positive.
Genetic testing stories
In this video series, three women who were diagnosed with metastatic breast cancer discuss the effect getting genetic testing had on their family relationships.
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Brenda was diagnosed with metastatic breast cancer and had genetic testing for a BRCA mutation. Her siblings came along to her genetic counseling appointment and learned what her unexpected results might mean for them.
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Felicia was diagnosed with metastatic breast cancer. There also is a strong family history of breast cancer in her family. After her cousins tested positive for a BRCA mutation, Felicia decided to get genetic testing as well. Her experience inspired her to become an advocate in the breast cancer community.
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When Amanda was diagnosed with metastatic breast cancer, her doctor recommended genetic testing. She wasn’t sure it mattered at first, but she ultimately decided to be tested to find out if her daughters might be at risk for a hereditary cancer syndrome.
Sadly, Amanda passed away in February 2020 and Brenda passed away in October 2021. We are forever grateful that they were part of the Breastcancer.org community.
— Last updated on January 13, 2022, 4:07 PM