How To Talk To Your Family About Genetic Testing For BRCA & Breast Cancer

With the holidays right around the corner, now is an opportune time to talk to far-flung relatives about breast cancer, other hereditary cancers, BRCA and any genetic testing your relatives may have received. Between a difficult diagnoses and the public nature of a holiday dinner, though, the topic can be tough to bring up, especially with a relative you haven’t seen in awhile.

What’s the best way to bring up private health issues, get important information for you and your children, yet not come across as intrusive to your loved ones?

Not Sure If Your Family Has a Cancer History?

If you don’t know of anyone in your family who’s been diagnosed with cancer, your job is to get educated before the holiday feast. Simply asking, “Who’s got cancer?” in the middle of dinner is not an option. In a family, there’s often one person who is the genealogist, the keeper of the information. Talk to that person first. If you feel comfortable asking about family cancer history, go for it! If not, explain that you’re interested in your family history and ask about your relatives. Questions like “how old did they live to” and “what happened to them” will often illicit cancer diagnoses, especially if someone in your family died of cancer at a young age. For breast cancer, don’t forget the female members of your father’s and grandfather’s side of the family. Breast cancer genes are passed through both the mother’s and father’s lines, even if men are less likely to be diagnosed.

If there is no “keeper of the information” in your family, and you’re not aware of any cancer history, sometimes starting broad discussions at the holiday dinner table yields a surprising amount of information. Try bringing up actress Angelina Jolie’s genetic test and her resulting mastectomy. Distant relatives might bring up other family members that were diagnosed or got genetic testing or even their own brushes with cancer.

Before You Talk To Your Relative

If you do know of a relative who has been diagnosed, sometimes it’s easier to talk to someone else first, someone who is closer to them, like a parent, sibling or child. Talk to that person. How is your relative doing? What type of cancer was it? How are they being treated? Did they get a genetic test? How open are they to discussing the cancer? It’s important to remember that the more recent the diagnosis, the harder it is to talk about, especially for the patient. While it’s easier to talk to relatives of the patient, they are less likely to have the more specific information you need like copies of tests and exact cancer type.

If you have some information on your relative’s cancer and you plan on seeing them soon, educate yourself on their cancer first before you ask questions. This will help you ask the right questions and avoid asking inappropriate questions. If it’s breast cancer, good things to read up on are the types of breast cancer, stages, different BRCA mutations and treatment options.

Talking To Your Relative

People are often reluctant to ask relatives about their cancer diagnosis because they’re afraid of coming across as selfish or nosy. But often, you can break the ice by simply expressing concern and empathy about what they are going through. Start with, “How are you doing?” Many cancer patients welcome the chance to open up and share their story, especially if the diagnosis and treatment is long past.

Remember, though, that the specific questions are best left to a private conversation, not at the holiday dinner table. Ask, “I know that this is a difficult topic—can we have a private conversation?”

Here are some of the questions we ask patients about their family cancer history. This a great starting point for information gathering, depending on your level of comfort:

  • Ethnicity – Do we have any Eastern European (Ashkenazi) Jewish heritage? What’s our family’s ethnic background (Irish, Dominican, Italian, African, etc)?
  • Age of onset – When did you get cancer? How old were you?
  • Cancer type – What type of cancer was it? For instance, if it was breast cancer, was it ER-positive breast cancer? Triple negative breast cancer?
  • First cancer site – Where did the doctors first find the cancer? Did it spread?
  • Treatment – What treatment did you have to go through? Did you do more than one type of treatment? Often if someone is unsure of their cancer type, the treatment can reveal the type of cancer.
  • Did you get genetic testing?
  • If so, what lab? (If you choose to get testing, testing at the same lab as your relative will give the best results.)
  • Do you know which BRCA mutation?
  • Could I get a copy of the report? (This is vital if you want to compare your genetic test to your relative’s test.)
  • Do you know of anyone else in our family who’s had cancer? Often less immediate relatives will have more knowledge of more distant relatives like your grandfather’s sister.

If your relative is reluctant to talk, sometimes asking about your own children helps: “Do you think you’ve had any testing that would be helpful to anyone in the family? That I can pass on to my daughters?” When people understand that their information can help family members, and even save lives, they might be more likely to open up.

Cancer diagnoses and health issues are often painful topics. Be aware of your family members’ sensitivity and use your best judgment on how to bring up the topic. All families and cultures are different and what works well for one family may be taboo in another.

In the end, being knowledgeable about your family’s cancer history is definitely worth the effort. Having more information on your cancer risk levels can help you and your doctor create a customized early detection strategy and could inspire you to reduce other controllable risk factors like smoking, alcohol, obesity, and high fat diet, all positive steps for a healthy life.