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Sharing cancer risk news with your family: a conversation that can save lives

Imagine you’ve learned that your genetics put you at higher risk for certain cancers. How do you break that news with family members who may share your same genetic traits?
Learning that you’re at risk for hereditary cancer does come with an extra responsibility: Telling your family. There is no "right way" to share that news, and how you inform your immediate and extended relatives is a deeply personal choice.

The holiday season is often a popular time to share major family news, such as pregnancies, engagements and new jobs—but what about being genetically predisposed to cancer?

Advances in genetic counseling have saved some would-be cancer patients years of struggle, pain and financial hardship. Discovering a genetic predisposition to certain types of cancers can allow patients to be proactive, potentially saving lives. But learning that you’re at risk for hereditary cancer does come with an extra responsibility: Telling your family.

Patients that undergo genetic counseling have an obligation to share with their family that they, too, may be at risk, according to Mary Ahrens, MS, CGC, a genetic counselor at the Cancer Risk Management Program. But how do you tell them?

That choice is deeply personal, Ahrens said. She and the genetic counseling team work with patients to help them understand their genetic test results and figure out how to share those with relatives who could also be at risk. What works for one family may not work for another. Some people send out a mass email, while others have included the information in a Christmas letter. Others tell one relative, who then communicates the message to the wider family. Ahrens said it’s important for a patient to understand their family’s unique dynamic and share their news accordingly.

“Each family has their own way of communicating and they know the most effective way to ‘talk’ to their relatives,” Ahrens said.

Learn more about our Cancer Risk Management Program.

To help share the news, genetic counselors at the Cancer Risk Management Program give patients a “Dear Relative” letter along with a copy of their test results. This helps patients ensure they have all the information necessary to reach out to their family and helps relatives prepare to get tested themselves, if necessary.

No matter how patients choose to share the news, it is important that they do share it — because that awkward conversation could be a life-saving one. By learning about a genetic predisposition to certain cancers early, family members can take early action. For example, women who learn they have a mutation in the BRCA-1 or BRCA-2 genes—which can signal an increased likelihood of developing breast and/or ovarian cancer—can receive regular breast cancer screenings. In rare cases, they may choose to undergo a preventative procedure to remove their breasts if necessary. Women with this genetic mutation can also choose to discuss surgery to remove the ovaries when childbearing is complete. The goal is to reduce or eliminate the risk of cancer now that a patient knows that they are at high risk.

Clinical Nurse Specialist Denise Musser, APRN-CNS, OCN, ANG-BC, works with patients after they’ve undergone genetic counseling. She ensures that they receive recommended cancer screenings and other preventive measures. For example, an annual colonoscopy can simultaneously check for colon cancer and prevent the development of the disease by identifying and removing pre-cancerous lesions, Musser said.

“Our goal is to identify people who are at a higher risk for cancers and then help them reduce risk, catch their cancer early or prevent it altogether.”

So, if you plan to share the news over a holiday meal this season or send out a mass email to distant relatives, just remember Ahrens’ advice: It’s when or how you tell your family—not if.