AARP Hearing Center
What Genetic Testing Can Reveal About Your Cancer Risk After 50
As many as 10 percent of cancers are hereditary. Knowing your risk can help guide screening, prevention and care decisions as you age
Kyle Hilton
Key takeaways
- Up to 10 percent of cancers are hereditary, yet many people never receive genetic testing, even after a cancer diagnosis.
- Genetic testing can identify inherited mutations linked to cancer risk and help guide screening, prevention and treatment decisions later in life.
- A positive result does not mean you will develop cancer, but it may open more options for monitoring and early detection.
Cancer ravaged Debbie Denardi’s family on both sides. She lost her mother and three aunts to breast and ovarian cancer. Prostate and colorectal cancer stalked her father’s side, killing her uncle and grandfather, and most likely, her sister.
“I always knew that I was going to have cancer too,” says Denardi, a businesswoman and advocate in Miami.
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Eventually, she did. Frequent screening by mammogram and ultrasound found Denardi’s triple-negative breast cancer. Genetic testing uncovered a faulty BRCA1 gene, which boosts risk for breast, ovarian, prostate and pancreatic cancers.
At age 62, she joined a clinical trial recruiting patients with harmful changes in the BRCA1 and BRCA2 genes. During the trial, Denardi learned that she also carries a faulty gene for Lynch syndrome, a little-known condition that raises the risk of several cancers, including colorectal cancer by as much as 80 percent in men and endometrial cancer by as much as 60 percent in women. Both of her adult sons carry the mutation.
“Now, looking back, I think, why did I sit down in those medical offices and write all these things, and they never paid attention, never recommended genetic testing,” says Denardi. “I would have done it if I had known.”
While most cancers are random and caused by risk factors, as many as 10 percent are hereditary. Still, many people never get genetic testing — even after a cancer diagnosis. Those numbers climb in historically underserved populations. Hispanic and Black people are referred to genetic services less frequently than their white counterparts. The consequences are devastating.
Today, genetic testing is more affordable and advanced than a decade ago, with options that can detect dozens of inherited mutations linked to many cancers.
“The chance that you could be carrying a gene related to hereditary cancer risk, with or without a concerning personal family history of cancer, is actually more common than anyone might think,” says Sara Pirzadeh-Miller, director of Cancer Genetics at UT Southwestern Medical Center in Dallas and immediate past president of the National Society of Genetic Counselors.
And knowing that risk is especially valuable information for folks 50 and older.
Testing at 50-plus
One reason genetic testing is still important after 50: We’re living longer and more active lives. And the age of onset for hereditary cancers varies depending on the gene, says Sue Friedman, executive director of the nonprofit group known as FORCE (Facing Our Risk of Cancer Empowered), and an early-breast cancer survivor.
While some hereditary cancers are first diagnosed at a younger age, Friedman says plenty of folks don’t learn they carry a faulty gene until after the age of 50 or 60, because no one recommended screening before then. Ovarian, pancreatic and prostate cancers — all of which can be caused by gene mutations — most frequently show up after the age of 50.
Junius Nottingham Jr. wishes that any health care professional had recommended genetic testing over the years. His family tree is loaded with cancer, and its members have paid dearly for that lack of knowledge.
Seven years ago, at age 28, Nottingham’s son Jeremy was diagnosed with stage 4 colon cancer, which had already spread to his liver. Nottingham soon learned that both he and Jeremy carried a mutation in the MSH2 gene, indicating Lynch syndrome.
At age 64, while helping his wife care for Jeremy, Nottingham was diagnosed with stage 1 colon cancer and needed surgery. Jeremy died later that year. Today, Nottingham devotes his time to increasing awareness of Lynch syndrome with speaking engagements, a website and a podcast.
“Every time I tell the story, I get emotional and don’t make apologies,” says Nottingham, a retired federal agent. “Cancer is real.”
Is testing right for you?
If you’re wondering about your own cancer risk, start by pulling together your medical history and your family’s history. (See the “red flags” graphic.) You can learn about your cancer risk from FORCE and the American Cancer Society by calling or using one of their online tools.
Once you know your risk, you need to decide whether to seek genetic testing. On the surface, testing is as simple as shipping off a saliva sample using a home test kit or getting a blood draw in the doctor's office. The safest route, however, is to first reach out to your primary care physician, a specially trained nurse or a genetic counselor.
These professionals can help determine whether genetic testing is appropriate and recommend a gene panel based on your personal and family history.
Once the results come back, you will need someone who can accurately interpret them, says Pirzadeh-Miller. Genetic counselors can also help with the cost of testing and insurance paperwork. Most importantly, they can guide you through your next steps.
Should your test come back positive, you’ll have many decisions to make, depending on your age, overall health and screening guidelines. Guidelines from the National Comprehensive Cancer Network (NCCN) outline screening or surgical options based on the cancer type.
Most insurance plans cover cancer genetic testing when referred by a health care professional. There’s a catch, though, for those over age 65: Medicare does not cover preventive genetic testing and care, unless you are currently in treatment with a cancer diagnosis.
“If you do not have cancer, or had cancer many years ago and you beat it, Medicare is not going to pay for you to have testing even if you meet all the criteria outside of Medicare, such as NCCN guidelines,” says Lisa Schlager, vice president of public policy for FORCE.
Proposed legislation, called the Reducing Hereditary Cancer Act, could help close that gap and ensure preventive care is covered. So far, the bill has been introduced in Congress but has not passed.
You’ll also need to consider potential insurance issues. The Genetic Information and Discrimination Act prohibits discrimination based on genetic information in health insurance and employment, but it doesn’t cover life insurance, long-term care and disability insurance.
Knowledge is power
Whether you choose to test or not, know that a positive result doesn’t mean you will get cancer; it means you are at higher risk, and family members may be as well. A negative result doesn’t make anyone risk-free.
One thing is certain: If you test positive, you have more options today for prevention and surveillance, which could catch cancer at a stage early enough to cure.
Dr. Olufunmilayo I. Olopade, an oncologist and cancer geneticist at the University of Chicago, urges her patients to think of genetic testing as part of their family’s legacy. Our genes can make our eyes brown or blue, and sometimes they can increase our risk for cancer, because that’s what hereditary cancer is about, she says. Unless you complete genetic testing, you can’t tell whether you may have inherited any cancer risk.
When she first started practicing medicine, Olopade says her patients were dying of cancer due to faulty BRCA1 and BRCA2 genes and wished they had been able to do something to prevent it.
Now they can.
“Part of staying healthy is knowing your risk,” Olopade says.
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