Medical Treatments
4:17 pm
Tue May 14, 2013

Genetic Counseling Can Help Women At Risk For Breast Cancer

Originally published on Tue May 14, 2013 7:15 pm

Transcript

MELISSA BLOCK, HOST:

This is ALL THINGS CONSIDERED from NPR News. I'm Melissa Block.

AUDIE CORNISH, HOST:

And I'm Audie Cornish.

On the op-ed page of The New York Times today, the actress Angelina Jolie revealed she recently had a preventive double mastectomy, both breasts removed and then reconstructed. Her mother died of breast cancer at 56 and Jolie herself had been diagnosed with the inherited BRCA1 gene mutation, which significantly increases the risk of breast and ovarian cancer.

And so, she writes: I decided to be proactive and to minimize the risk as much as I could.

Of course, there are women everywhere who carry the same gene mutation as Angelina Jolie. But do they have the same sort of access to genetic counseling and medical procedures? To help answer that, we're joined by Sue Friedman. She's founder and executive director of the group FORCE. That stands for Facing Our Risk of Cancer Empowered.

Sue Friedman, welcome.

SUE FRIEDMAN: Thank you for having me.

CORNISH: So, first, to be clear, the majority of breast cancers are not caused by a BRCA gene mutation. But if you do have the mutation, you're much more likely to develop breast or ovarian cancer, is that correct?

FRIEDMAN: That's correct. About five to seven percent of breast cancer, about 14 to 20 percent of ovarian cancer is due to a gene mutation - so, not the majority. And people who inherit a BRCA mutation are at very high risk for both cancers and also at somewhat higher risk for other cancers, too.

CORNISH: Now, Angelina Jolie writes in this New York Times op-ed that: Today, it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer and then take action.

But how easy is it for women to do so? And, for instance, do most insurance policies cover the steps that she took?

FRIEDMAN: So, there are national guidelines that determine who should and who will get the most benefit from a genetic evaluation. It's important to us to make sure people know that you should see an expert known as a genetic counselor, or a medical geneticist, in order to find out what your risk is, rather than just going out and getting a blood test.

And if the chance of having a mutation is high enough, based on expert guidelines, most insurances will cover genetic counseling and genetic testing.

CORNISH: But what about that next course of action? In this case, Angelina Jolie talked about a preventive double mastectomy. Is that something covered? What are the out-of-pocket costs involved here?

FRIEDMAN: A lot of it depends - there's a lot of different options for the types of mastectomy and reconstruction. It's actually - that technology has come a long way, and it depends on people's insurances. But we have found in the FORCE community, which is thousands of women who have undergone these procedures, most insurances will pay for mastectomy. And if they pay for mastectomy, they must also pay for reconstruction based on federal law that was passed in 1998.

CORNISH: Now, Angelina Jolie also said that she started with the mastectomies because her risk of breast cancer was higher than her risk of ovarian cancer and that the surgery is more complex. Now, does your organization, FORCE, advocate for one course of action over another?

FRIEDMAN: What we advocate for is informed decision-making. There are other options. We do know that prophylactic surgery - removal of the breasts, removal of the ovaries, and fallopian tubes, which is also very important - are the most effective way to lower risk. But they're not the right choice for everyone and there's timing issues, as well. So someone in their life may not be ready to have surgery, but maybe down the road will decide to have surgery later.

So what we advocate for is people getting the most up-to-date, balanced information and seeing a genetics expert, and then making the decision that makes most sense for them. There are options as far as increased surveillance. And there are medications that can somewhat lower the risk for both of these cancers but they're not as effective as surgery.

CORNISH: Now, how widespread is genetic counseling? I mean, is this something that's really available in all communities across the country?

FRIEDMAN: That's a great question and it is now because genetic counseling is available by telephone, as well as in person, through board-certified genetic counselors. So I think that that really has opened up the way for more people - people in rural areas, for entire families at the same time - to undergo genetic counseling. And it's important that people get credible information from the experts who are really trying to give it.

CORNISH: Now, Sue Friedman, Angelina Jolie is certainly not the first person - or even the first celebrity - to speak out about having preventive mastectomies but she may be the most famous woman to do it. And how significant do you think her op-ed is?

FRIEDMAN: I think any time this topic comes out to the public and is in the public eye, it allows the people that are touched by it, that read it, to understand, wow, maybe I should see an expert. Maybe I should get more information. Maybe I should find out a little bit more about my family history. And, as I said, we know that that's life-saving. It gives us the opportunity in many cases to prevent cancer.

CORNISH: Sue Friedman, thank you so much for speaking with us.

FRIEDMAN: Thank you for having me.

CORNISH: Sue Friedman is founder and executive director of the group FORCE, which stands for Facing Our Risk of Cancer Empowered. Transcript provided by NPR, Copyright NPR.