Article: How your ovarian cancer diagnosis can help your relatives

Contents

ARTICLE AT A GLANCE

What is this article about?

A Healthline.com article provides guidance to those with ovarian cancer about when and how to talk to relatives about increased cancer risk due to an inherited mutation.

Why is this article important?

Up to 25 percent of ovarian cancers are due to an inherited mutation in a gene linked to cancer.  The  BRCA1 and BRCA2 genes are most commonly associated with ovarian cancer. Other genes that have been linked to ovarian cancer include ATM, BRIP1, EPCAM, MLH1,  MSH2,  MSH6, PALB2, PMS2, RAD51C and RAD51D. Because so many cases of ovarian cancer are due to an inherited mutation, current guidelines recommend that anyone diagnosed with ovarian cancer undergo genetic testing.

The guidelines also recommend that people with ovarian cancer who test positive for a mutation share this information with their blood relatives, who may also be at increased risk. This article provides information on how to share information about an ovarian cancer diagnosis, genetic testing results and increased risk for cancer with family members.

Talking to loved ones about an ovarian cancer diagnosis and genetic test results

Learning about a family cancer risk that is due to an inherited mutation can be stressful, especially when it is a surprise. A range of emotions is common, often including anxiety, guilt, fear and lack of acceptance. Some family members may be thankful to have new details and be ready to seek genetic counseling. Others may not want to know the results or be tested.

Learning about an increased cancer risk due to an inherited mutation can also be positive. Sharing your diagnosis and genetic test results with family members can help them make medical decisions to manage their risk for cancer. It may also help guide treatment for relatives with a cancer diagnosis. Talking to family members about your ovarian cancer diagnosis and genetic test results can be difficult. This article suggests a variety of ways to have this conversation. Healthline.com spoke with FORCE advisory board member Leigha Senter, CGC, who offered tips to make this conversation with loved ones easier.

• Start with one trusted relative, even if that person isn’t a first-degree relative. This might be an option if you have a trusted aunt or uncle who could help you come up with a plan for talking with other relatives who need this information.
• Write a letter. If talking directly to family members may be difficult or specific family members may be difficult to talk to, writing a letter is a good way to get the information to them. It also gives you a way of fine-tuning your message until it sounds just right to you. A genetic counselor may be able to help you write your letter or provide a template as a starting place.
• Send a video. Similar to letter writing, this provides an opportunity to work on what you want to say and how you want to say it until you feel good about your message.
• Involve your provider or another expert in a virtual or in-person group discussion. Some providers may be willing to conduct a group appointment to explain the issues of risk, giving context to what might be frightening information.
• Allow your provider or another expert to talk to relatives on the phone. If your provider is willing, you can permit specified members of your family to call your provider and ask questions.

The article stresses the importance of telling all relatives—not just females—about genetic test results. Mutations can be passed down from either parent, and people of any gender may carry a mutation that increases the risk for cancer. 

It suggests waiting to talk to younger children about what the risk means since they have plenty of time before it could potentially impact them.

The article also suggests reassuring relatives that they don’t have to act immediately—or at all—on the information. It also reminds readers that not all relatives will be grateful. Some may be angry. Expect a range of emotions; it’s a lot of information to take in, and people may not initially react in ways you might expect.

The Healthline.com article provides resources for more potentially helpful information about planning your discussion. See the resource block below.

Some relatives may be concerned or fearful of the legal implications regarding the information you provide. The Genetic Information Non-discrimination Act (GINA) prohibits insurance companies and employers from discriminating against you or your relatives for genetic test results that indicate an increased risk, information about a family’s medical history or your participation in research that includes genetic testing, counseling or education.

If you plan to talk to relatives about your ovarian cancer diagnosis and how your genetic test results can impact their risk of developing cancer, consider whether to talk to a single person or have a group discussion. You may want to do this via letter or video or first speak with a relative whose risk isn’t as great—someone who is not biologically related to you, for example—if that makes you feel more comfortable. Determine if you would like your provider or an expert to be involved and the steps you might need to consider to make that happen. Look at some of the available guidance on having such talks. Finally, consider the optimal time to talk to young children about their possible increased risk. Preparing for these conversations can help you deal with a wide range of possible reactions.

What does this mean for me?

If you have been diagnosed with ovarian cancer, your relatives may also be at increased risk of ovarian and other cancers. Having a conversation with family members can be challenging. Reaching out to health care providers, friends and family can help begin these conversations. Sharing accurate information with family members can help them take action to protect their health and reduce their cancer risk.

Reference

Lovering C. “How to Talk to Loved Ones About Ovarian Cancer Risk.” Healthline.com. August 25, 2021.

Disclosure: FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.

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posted 7/28/22