When you receive a diagnosis of ovarian cancer, it gives you a lot to think about. Besides the effect of the condition on your own life, you may also want to start discussions with family members.
Family history of ovarian cancer can increase risk, so talking with relatives can help others gain information to improve their own health outcomes.
Knowing your risk can help care teams with early detection, treatment, and even prevention. But many people don’t know how to have these conversations.
Healthline spoke with Leigha Senter, a genetic counselor and researcher who helps people communicate with family members about cancer risk. She offered insights on how to make the process easier.
“There’s no right or wrong answer about who to talk with first. It can be overwhelming, particularly if you have a big family or if you have estranged family relationships.
“So I always say, just start with one person.”
The first conversation could be with an aunt, cousin, or whoever makes you feel most at ease. That’s the case even if you are aware that immediate family may potentially have the greatest personal stakes in the issue.
She also notes that people of all genders should be included in these discussions, not just women. While a person without ovaries will not get ovarian cancer themselves, they can pass those genes along to their children.
“You inherit these genes from men and women. So, a man having a family history of ovarian cancer could impact risk, too,” Senter says.
Whether it’s because you have a large family or the idea of having the same conversation with several people seems too much, Senter recommends getting someone to help.
It’s a sentiment echoed by the
“I can’t call your sister out of the blue and say, ‘Here’s your sister’s genetic test result,’ because of privacy laws. But if you allow for permission and have your sister call me, then we can have that discussion.
“Sometimes we’ll even be able to chat with relatives in a group setting, which is sort of nice because there’s some shared experience there, and people can kind of feel some comfort by going through it together.”
Sometimes, people with ovarian cancer feel an obligation to educate family members on the condition and its genetic component. That can become difficult, especially when you are still learning what the diagnosis means for you. Senter recommends having reliable information at the ready.
“There’s definitely going to be questions that the person starting the discussion doesn’t feel comfortable answering or just doesn’t know the answer to. And that’s natural.
“Just being sure that we’re providing accurate information and have go-to places in case you reach your limit and just can’t answer questions anymore is important.”
Senter recommends FORCE, an advocacy organization for people living with hereditary cancers. She sits on their advisory board.
There’s often a range of emotions you may experience before the discussions and during these talks. Senter says people can take their time with these communications.
“It’s natural to feel a sense of guilt. Like, oh gosh, I may be passing something on to my kids and this may impact their cancer risk. It’s also natural to worry.
“Relatives have a gamut of reactions, everything from being confused or sometimes even angry about getting this information, to gratitude and being so thankful that they can go get tested and be proactive about their health.
“That’s why I think it’s just like getting through a diagnosis or a week of treatment. It’s one day at a time.”
Similarly, she says having these discussions is one step at a time.
Taking it one step at a time is also good advice when you have young children. Since hereditary cancer testing usually doesn’t start in childhood, it’s OK to focus first on having the discussion with adult family members.
“Thinking about children is a huge emotional burden. If they’re small, that can be delayed somewhat because it’s not going to change anything for them necessarily in the short term,” she says.
One goal of speaking with family members may be to encourage others to get genetic testing or to be aware of the potential higher risk of developing cancer. However, Senter points out that family members can start slowly in the process of learning about ovarian cancer and its genetic component.
“When you have that discussion with a care provider, it’s not obligatory that you then also have testing on that day. You may just have questions while you process. That’s fine.”
Speaking with a care provider can help family members put a diagnosis in perspective. Senter offers the example of a woman with ovarian cancer who has received genetic testing and does not carry a mutation. Her sisters or daughters may not necessarily need genetic testing, but may be more proactive about their health.
“It just gives a little added incentive to be extra attentive if they notice any of these sadly subtle symptoms that ovarian cancer presents. Then they may be a little more diligent about getting those checked out,” Senter says.
For some people, it is challenging to have face-to-face conversations about an ovarian cancer diagnosis. Fortunately, there are many ways to get the message across.
“The video essentially says a relative’s gone through genetic testing. They have a mutation in one of these genes. Here’s what it can mean for you.”
The upshot may be that there’s no one way to talk to relatives about ovarian cancer risk, and people should feel comfortable exploring whatever format works for them.
Talking with relatives about genetic testing is an important step after an ovarian cancer diagnosis. Reach out for help from care providers, friends, and family to have these conversations. Sharing accurate information can help others take action to protect their health and reduce their cancer risk.