1. You Might Be Wrong About the Kinds of Cancer in Your Family
“It’s shocking how inaccurate family histories are,” says Theodora Ross, MD, PhD, professor of internal medicine, director of the Cancer Genetics Program at the University of Texas Southwestern Medical Center, and the author of A Cancer in the Family: Take Control Of Your Genetic Inheritance. “Everybody mixes up cervical and ovarian cancer or ovarian and gastric, for example. Or you hear that someone died of liver cancer, which probably isn’t true — it’s more likely that it spread from somewhere else.”
“I have a family history of cancer — siblings, parents, aunts and uncles — and when I started digging for specifics after I was diagnosed with melanoma, even I, as a doctor, had a hard time getting good information on who had what. My Uncle Jack, my favorite uncle — the rumor is that he died of adrenal cancer, but I doubt it. It was probably lung cancer. And as I was writing the book, I kept going back and forth about my Aunt Evie, whether she had endometrial or ovarian cancer. I still don’t know what she had.”
2. You Should Make a Pedigree, if You Haven’t Already
“It’s similar to a family tree, but you’re including known cases of cancers, age of diagnosis and the age each person was when they died,” says Ross. A genetic counselor can help you make a more detailed, official version, but it’s helpful to have one started before you make an appointment.
Pedigrees helped scientists make an eye-opening discovery about one of America’s most famous families. “From the 1960s to the 1990s, four generations of McCoys [of the Hatfield’s and the McCoys] were being studied by researchers at the University of Virginia. Looking at their pedigrees, the researchers saw a huge number of people in the family with pheochromocytomas, a rare adrenal gland tumor,” explains Ross. “With cancer that rare, you always suspect a genetic mutation, and they found that each person with this tumor had a mutation in the VHL gene, which means they had Von Hippel-Lindau syndrome. These tumors secrete your fight-or-flight hormones, and theoretically they can lead to behavioral changes like anger. So you could speculate that the Hatfields versus the McCoys was because of the McCoys! But even cooler is that when the McCoy family figured out what the mutation was, they went public so distant relatives who weren’t being studied would know about their risk. I’m sure they saved people’s lives by doing that.”
3. What You’re Looking for Goes Beyond Relatives With the Same Kind of Cancer
There are two main things to watch for: linked cancers that point to a genetic mutation, as well as patterns. “For patterns, we’re talking about early age of onset, like breast or colon cancer in the 30s or prostate cancer before age 50, family members with multiple cancers, cancers in paired organs in the same person (i.e., both breasts or both kidneys), or multiple people in the family having the same form of cancer,” says Ross. Linked cancers mean forms of cancer that you might not think to pair together, like pancreatic and melanoma, but are caused by mutations in the same genes. “Other classic examples include breast and ovarian, breast and colon, colon and bladder, and thyroid and adrenal,” says Ross. Find more information on linked cancers from the National Cancer Institutes here.
4. A Genetic Counselor Does Much More Than You Think
If you find patterns or linked cancers in your self-made family pedigree, you may want to talk to a genetic counselor. They’ll not only help you interpret the results of genetic testing, says Ross. “Certified genetic counselors go to the ends of the earth to help you get medical records and as much data as you can to make a complete, accurate family history. They can also talk to family members to both get information and share the news if you find out that you have a genetic mutation that increases your risk.” They’ll even help you figure out what your insurance will pay for if your results come back positive for a mutation — for example, if your tests show an increased risk of breast cancer, your genetic counselor can find out if your plan covers extra screenings like more frequent mammograms or breast MRIs.
5. It’s Natural to Hesitate but the Way You’ll Feel After Getting the Test Might Surprise You
“I was scared to do it, and it wasn’t until after my melanoma diagnosis that I actually did it, and even at that point, it was only to make my husband happy,” says Ross. “I didn’t think I was dealing with an inherited problem, which is remarkable — here’s someone who knows about science and medicine, has had many relatives with cancer, and still can’t see the truth in themselves. But one of the things that was most shocking to me is what a new lease on life it was to just do it, learn more about my risk, and what my options were.” (Ross found out she carries the BRCA1 mutation and elected to have a double mastectomy and, later, have her ovaries removed.)