Ovarian Cancer: Awareness means silent no more
by Joy Larsen Haidle, MS, LGC
Joy Larsen Haidle, MS, LGC, is a past-president of the National Society of Genetic Counselors and a genetic counselor at the North Memorial Health Cancer Center in Minneapolis.
Ovarian cancer can be a silent killer. Most women are diagnosed with this cancer at later stages, as the symptoms are often silent or not recognized as indications of cancer in earlier stages in the midst of busy lives. As a genetic counselor, I frequently meet with women diagnosed with ovarian cancer and their family members to discuss the odds that the disease could be inherited, and I address their concerns and questions about cancer risk. Below are some of the common questions I hear that may be relevant to you or someone you know.
Should I be tested?
Since 2008, the evidence-based guidelines have recommended genetic testing for all women diagnosed with ovarian cancer, regardless of their age at the time of the diagnosis or their family history. Genetic testing is recommended at the time of diagnosis or early on in treatment planning because the results from a genetic test may provide useful information to help your doctors determine the best options to treat the cancer. Up to 25% of women with ovarian cancer will have an identifiable risk factor (mutation). This is important because women who have a mutation in BRCA1/2 or in a related group of genes may benefit from a type of medication called a PARP inhibitor.
The result of your genetic test may also provide information about your risk for future cancers and provide recommendations for surveillance or risk reduction options for yourself and family members.
What if I don’t want to test, but I want to give information to my relatives?
Just because genetic testing is available doesn’t mean that it has value to everyone. Meeting with a genetic counselor does not obligate you or anyone in your family to have genetic testing. A genetic counselor can help review your family history and select the best test for the cancers in your family. Part of a genetic counselor’s job is to help you and your family members understand what a genetic test can and can’t tell you, and to help you feel more informed in conversations with your doctors.
To provide information to a family about genetic risk, it is often ideal for the person who was diagnosed with ovarian cancer to undergo genetic testing. If you are that person and you don’t want to have genetic testing done, but you want information to be available to your family, you could think about DNA banking.
Banking a DNA sample means a sample of blood is drawn and the DNA is stored in a special freezer to be saved for a future time when your family is ready to learn the results of the testing. DNA banking is also useful when genetic testing was completed, and no mutations were identified. The sample may be banked and used in the future when tests improve, as technology will change over time.
I have a family history of ovarian cancer. Should I remove my ovaries?
Women whose relatives have passed away from ovarian cancer may wonder about their own chance of developing ovarian cancer and whether they should consider surgery to reduce their ovarian cancer risks. If the relative diagnosed with cancer has already passed away, testing is still an option for healthy relatives. If testing in the family did not identify a mutation, the decision to remove ovaries is often based on your family history. Meeting with a genetic counselor to complete a full cancer risk assessment can be useful in determining your lifetime chance of developing ovarian cancer and to put that information in context with the risks, benefits and limitations of risk reduction surgery.
What if my doctor doesn’t bring up genetic testing?
Feel empowered to raise the topic with your doctor if it has not already been addressed. Doctors have many topics to cover during an appointment. Family history and genetic testing often fall lower on the priority list. It is helpful for you to raise the topic with your doctor. NSGC recently completed a project with several other organizations and learned that genetic testing for women with ovarian cancer is still underutilized. In our study, only 22% of women with ovarian cancer had documentation of genetic testing in their medical record. Considering that medical guidelines recommend all women with ovarian cancer be offered genetic testing, there is more work to be done. Patients and providers working together can help benefit more people.
How do I find a genetic counselor?
Many genetic counselors offer consultations through in-person visits or using telephone or telehealth options such as Zoom. Genetic testing is often completed via a blood or saliva sample, so it is possible to test from home and still access expert services and quality genetic testing. Those who live in rural and underserved areas may take advantage of the telehealth options to easily access care.
Inherited risk factors for ovarian cancer are important for women and their families to be aware of. Sharing information about a diagnosis within your family may help to decrease the chances that your relatives will be caught off guard by a cancer diagnosis too. Discussing family health history around cancer or other conditions is an important part of precision medicine and can help tailor surveillance, treatment and risk reduction options.
Ask your relatives about the kind of cancers present in your family, ages when the cancers were diagnosed, how those individuals are related to you and whether women in the family have had a hysterectomy (with or without removal of the ovaries) and their age at the time of the surgery. These details will help provide more useful information for a cancer risk assessment and conversations about how to best protect your health.
Visit findageneticcounselor.com to search for genetic counselors who are offering telehealth services or are located near you.