Genetic Testing and Family Relationships
There are many factors to consider when deciding whether genetic testing is for you. If you’ve been diagnosed with breast cancer or you have a family history of the disease, you may want to find out if you carry a gene mutation that increases your breast cancer risk. And if you do, it may mean having difficult conversations with relatives before and after. So it’s essential to consider the psychological and emotional effects the results can have on you and your family. Keep in mind that:
it’s not always easy — or necessary — to find out how many relatives on both sides of your family have a history of breast cancer or other types of cancer
the test results can have a huge effect not just on you but on the rest of your family as well
Compiling an accurate family history
If you’re able to put together a list of relatives who’ve died from or have a history of cancer, ask if it’s possible to confirm against medical records or pathology reports.
For example, if someone in your family died of liver cancer, it helps to find out whether the cancer started in the liver or in the breast and then spread (metastasized) to the liver.
The challenges of researching your family history
It’s easier to decide which type of genetic test to have when you and your doctor or genetic counselor know who’s been diagnosed with cancer on both sides of your family. The more information they have, the easier it is to figure out which gene or group of genes to examine.
Of course, researching your family history often requires cooperation among family members. In some cases, doctors may require relatives to sign release forms before you can access the medical information you need.
Not everyone is close with their families, however. Even if that’s not the case for you, not everyone in your family may feel comfortable releasing copies of their pathology reports to your doctor or genetic counselor. Some relatives may even be reluctant to talk about cancer openly.
As a result, you may not be able to get much, or even any, information about family members who have died of cancer or have a history of the disease.
But you should still talk to your doctor and genetic counselor if you or someone in your family has been diagnosed with cancer. Genetic testing may make sense for you even if you don’t have as full a picture of your family history as you’d like.
Family emotions during the genetic testing process
A positive genetic test result can change some family relationships.
When people learn that a cancer-related mutation is present in their family, they may feel a number of things:
Guilt: People who test positive for a gene mutation that increases breast cancer risk may feel guilty about possibly upsetting their family or passing it to their children, if they have any. People who test negative may feel guilty if other family members test positive.
Relief: It’s normal for people to feel relieved if they learn they haven’t inherited a cancer-related gene mutation or that other relatives have tested negative.
Resentment: People who test positive for a gene mutation may resent relatives who test negative.
Fear and anxiety: Regardless of whether you or any relatives test positive or negative for a gene mutation, it’s normal to worry about having an increased cancer risk. Even people who test negative can feel anxious about their own health.
Sometimes people change their minds about getting genetic testing or sharing their results. After someone tests positive for a gene mutation, relatives who didn’t want to be tested may decide to get tested after all. And relatives who were unsure about getting tested may decide not to get tested because they’d rather not know.
If you need advice on how to speak to your family about genetic testing, a genetic counselor can help. Learn more about getting genetic counseling.
Family relationships after genetic testing
It can be difficult to let your family know if you’ve tested positive for a gene mutation that increases breast cancer risk. The implications of a positive genetic test result affect you and them.
For you, it may mean additional and more frequent screening, surgery to remove the breasts or ovaries, or deciding on a specific treatment plan (if you’ve already been diagnosed with breast cancer). For family members who haven’t been diagnosed with breast or other types of cancer, it means wondering what comes next. Some relatives may choose to:
do nothing because they aren’t ready to take any steps yet
be tested to see if they have the same gene mutation as you so they can figure out what to do next
talk with their own doctors about breast cancer risk and figure out if they are ready to have genetic testing so they can reduce that risk
Sharing genetic information with children and young adults
People who test positive for a cancer-related gene 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.
Genetic testing is typically not recommended for children younger than 18, but it can be considered when your children reach adulthood. Younger children might not be able to understand what your mutation means for you or for them.
Here are some tips you may find helpful if you have children.
Children who worry a lot or are anxious may not get any benefit from knowing that a cancer-related mutation runs in the family. 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 have finished with their education.
If your kids suspect something is going on, it may make sense to tell them. Children can often sense when there is an issue in the family. Your child may ask questions if they’re aware that various family members have been diagnosed with cancer. They also may be curious about any medical appointments.
It can be upsetting to learn that you have tested positive for a cancer-related gene mutation. In these cases, it may be helpful to speak with a genetic counselor, a mental health professional, or a peer support group. FORCE, a nonprofit organization that advocates for people facing hereditary cancer, offers a list of support services that can help you connect with other high-risk people online, over the phone, or in person.
Terms like genetics, heredity, mutation, and even cancer can be difficult to explain to children. It’s a good idea to ask your genetic counselor for advice on how to talk about 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 mistake in a gene that can lead to the growth of unhealthy cancer cells. The important thing is to keep your explanation simple and to the point.
Knowing that you and the people you love have an increased risk of developing breast 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.
Regardless of how old they are, children can be anxious about their health after learning they may have a cancer-related gene mutation. 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 to make sure children have the support they need.
You don’t have to approach this conversation as a one-time deal. In fact, it’s a good idea to keep speaking about your genetic testing results with your children as they get older.
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 your kids know but you have brothers or sisters who haven’t told their children yet, conversations can get tricky. As your siblings’ children get older, you can try talking to them again about cancer risk in the family.
The National Society of Genetic Counselors published Talking About BRCA in Your Family Tree, which you may find helpful. Although the booklet focuses on BRCA, its advice is relevant to families with any of the other inherited gene mutations that can increase breast cancer risk.
Genetic testing stories
In this video series, three women who were diagnosed with metastatic breast cancer discuss how genetic testing affected them and their families.
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.
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.
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 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 February 22, 2023 at 7:37 PM