Should you get genetic testing for cancer?

Your family's stories and who you will become are written in your 20,000 genes. The shape of your nose, the color of your hair − and, more and more, we're learning − the chance of cancer.

In the mid-1990s we learned about BRCA gene mutations (actually two genes, BRCA 1 and BRCA 2) that play a role in breast cancer, but now genetic counselors have even more tools at their disposal. 

Gayle Patel, director of genetic risk evaluation and testing program at Texas Oncology, says the world of genetic cancer testing really expanded in 2013 when panel-based testing was offered.

She'll be talking about that and specifically about the BRCA genes mutations on Sunday at the Dell Jewish Community Center at an event called What's Jewish About Breast and Ovarian Cancer? The event is open to the public and will cover everything from genetic testing to how to manage and prevent hereditary cancers.

Those BRCA genes mutations happen in about 1 in 40 people of Eastern European Jewish descent as compared with 1 in 400 for everyone else. But the lessons of the Jewish community and the BRCA genes mutations apply to other cultures and cancer gene mutations.

When Patel and other genetic counselors are looking at the possibility of someone having a hereditary cancer, they take a really good family history to make sure they are looking in the right gene group. Sometimes it's BRCA 1 or BRCA 2, but sometimes the mutation is somewhere else. They are learning that if it is a BRCA gene mutation, it's not just about female breast cancer. It could be a family history of ovarian, male breast cancer, melanoma, prostate cancer or pancreatic cancer. There's also a link to childhood leukemia and a rare syndrome related to both parents passing on the BRCA 2 gene mutation.

"We have so much to learn about different genes," Patel says.

Typically these hereditary cancer genes are actually tumor suppressors that have the job to go out and get rid of cancer, Patel says, but for some reason, with a mutation, that gene doesn't get rid of the cancer.

Some cancers are less likely to be hereditary, Patel says, "but I hesitate to say it's not genetic."

For example, lung cancer was thought to not be inherited, but "in a few families, we have found a genetic cause," she says.

Often it's an existing patient with a diagnosis who is coming in for testing, but about 30 percent of the people Texas Oncology sees for genetic testing don't have cancer but instead have a family history of it. Usually, they will start with the person who had the cancer if they are still alive. Testing costs about $250 to $300 for an initial test, and often health insurance will cover it if you meet the criteria.

"The majority of patients we see are worried," Patel says. "They have seen cancer in their family, and they want to take some action."

Before getting tested, families should know that a 2009 federal law prevents employers and health insurance companies from using that information against you, but there isn't the same protection for life insurance. Patel recommends taking care of that before doing the testing.

What genetic testing does do for families is allow them to be more proactive in screenings and other preventions. In breast cancer, it doesn't have to be as drastic as Angelina Jolie having a prophylactic double mastectomy. It might mean having regular mammograms before age 40 or doing breast MRIs as well. Sometimes risk-reducing medications like Tamoxifen can be used.

For colon cancer, it might mean earlier colonoscopies. For ovarian cancer, women might choose to have ovary removal surgery once they are done having children. For skin cancer, it means skin scans earlier and more attention to sun protection.

This could really help other family members and help change family stories, Patel says. "Could we get ahead of (cancer) and stop it in future generations?"