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Brigid Bergin: It's The Brian Lehrer Show on WNYC. Good morning again, everyone. I'm Brigid Bergin, in for Bryan today. When most of us think of the BRCA gene mutation, we think of a higher risk of breast cancer for women. Decades of awareness campaigns have encouraged more and more women to test for the gene mutations and to hopefully make more informed decisions about their care.

More recently, the mutations have been linked to other parts of the body and cancer it can cause there. Think the esophagus, stomach, skin, and prostate. In fact, as many as 60% of men with mutations in the BRCA2 develop prostate cancer. Many men are far less aware that mutations in this gene can impact them at all. Joining us now to explain the link between BRCA mutations and why more men should get tested is Kristen V. Brown, staff writer at The Atlantic covering health and science. Kristen, welcome to WNYC.

Kristen V. Brown: Hi, thanks for having me.

Brigid Bergin: If you're just tuning in, listeners, I wonder if we have any men listening out there that know they have the BRCA1 or BRCA2 gene mutations. How did you find out and what do you do with that information? Maybe you've had one of these cancers linked to mutations in these genes. Were you able to trace it back and see if it was linked to these mutations or were you screened and whether you had these gene mutations or not?

What was that like? What led you to ask or anything else you want to help us report this story? 212-433-WNYC. That's 212-433-9692. You can call or text at that number. Kristen, before we get really into the details, let's just do some basic BRCA 101. Some people refer to it by spelling out that acronym as I just did. Others say "brah-kuh." How do you say it and what does it stand for?

Kristen V. Brown: Yes, I say B-R-C-A, which is more correct. I think more people know it by "brah-kuh." It stands for three things, actually. It stands for breast cancer, BR standing for breast, CA for cancer. It's also a nod to UC Berkeley, which is where the researcher who first discovered the location of the gene worked when she found it. It references this scientist, Paul Broca, who was a 19th-century French physician who first established a link between family history and breast cancer. It has these three meanings baked into them, but two of them really are linked to breast cancer.

Brigid Bergin: When someone is getting tested and they're trying to determine if they have this mutation, what do the mutations look like? What are the people who are testing looking for, particularly ones you've referred to as harmful mutations?

Kristen V. Brown: Yes, so everybody has the BRCA genes. Just to clarify, I think a lot of people think that if they have the BRCA gene, that's bad. No, the BRCA gene is something we all have. What it does is help prevent cancer. It helps prevent tumors. It helps the body's immune system. When people have harmful mutations, it interferes with that process, which is how cancer develops. There are dozens and dozens and dozens of harmful mutations. That's what these genetic tests look for.

Often, people will be moved to get them because they have a family history of, say, breast cancer. The question will be, is there a genetic link? Now, most breast cancers do not have a genetic link. If you have many generations of people in your family who have had that cancer, doctor might suggest you find out if you have this gene, which would put you at an increased risk for breast cancer as well as several other cancers as you mentioned at the top of the show.

Brigid Bergin: When you talk about cancers being hereditary, do scientists think that these mutations are hereditary and that they can get passed down through the generations?

Kristen V. Brown: Yes, so it's called hereditary breast and ovarian cancer. It's a syndrome that's currently associated. These mutations are definitely hereditary, but most breast cancer is not hereditary. Your breast cancer can be caused by lots of factors, right? Environmental, genetics, all of those things. Usually, it's probably an interplay of the two. In the cases of having a BRCA gene mutation, that means you are at particularly elevated risk for those cancers. I should also mention that having this mutation is pretty rare. It's considered a rare condition.

Brigid Bergin: We're going to get into how this impacts men and how awareness of these gene mutations has been raised over the decades. We have a caller who I don't want to lose, Rob in Central Harlem. Rob, thanks so much for calling.

Rob: Hi. Thanks for taking the call. I just discovered that I have the BRCA mutation I discovered about two months ago. Initially, it was like, well, I do have a family history of gastric cancers, but I was aware of the breast cancer risk for women. Then I discovered that there's certainly more to it for men. I guess what's going through my mind now is I'm quite healthy, sort of, at 66 years old. What do I do with this information now? How do my physicians and how do I chart the rest of my life knowing this information about me? At this point in my life, how relevant is it? What should I do with this information to live the rest of my life and I hope in a positive way?

Brigid Bergin: Rob, thanks for those questions. Kristen, it's information. As he is stating, it's not a diagnosis of anything yet, so what do you do with it?

Kristen V. Brown: First off, big caveat, I am not a doctor. I am a mere reporter. Definitely, first step, talk to your doctor. As you mentioned, these genes having these mutations does not mean you are going to get cancer. It means you have a risk of cancer and in the case of the BRCA genes and especially high risk of certain cancers compared to the normal population. What that risk means is that, usually, doctors are going to want to do extra screenings.

For women who are at risk of breast cancer, that would mean increased mammograms, often at a younger age. For men, because prostate cancer is linked, there's a host of screenings that they might consider doing more regularly than typical to catch any cancers early. That's why identifying these genes has been so important in people is the ability to do those screenings and catch stuff early, or in the case of breast cancer for women, sometimes even doing preventative surgeries to prevent there ever being a chance of cancer. It's really important to talk to your doctor and find out what kind of screenings they would recommend for you and then to start doing those.

Brigid Bergin: Just to be really clear, I want to go back for a moment about the BRCA1 and BRCA2, which have more name recognition than probably most other genetic mutations. What's the difference between the two, just in lay terms?

Kristen V. Brown: Yes, so they're just two different genes that both perform the same function. You could have a mutation in one or the other of them, but they both increase cancer risk. Sometimes the risk is different between the two genes, but there are basically two genes that do the same thing separately. Risk can be from either of them if you have a mutation.

Brigid Bergin: I think you wrote about the fact that the BRCA genes have become inextricably linked with breasts as much as pink ribbons have become an international symbol of breast cancer. We're going to talk more about the impact for men, but how did this awareness get raised over decades for women? What do you think has been some of the outcome of that?

Kristen V. Brown: I think, first off, the name BRCA, breast cancer is in the name. In the '90s, when the two BRCA genes were discovered, it was a time when we really thought-- this was before we had decoded the human genome, before we had mapped it. At this time, we really thought that it was going to wind up being that each gene was linked to one or two diseases. You were going to find like, "Oh, here's the diabetes gene. Here's the heart disease gene."

It turned out that the genome is much more complicated. I think that was part of why, at the start, you would name a gene something like breast cancer gene because we really thought that was how it was going to play out. It just turned out being way more complicated. Most genes have many, many functions in the body and affect tons and tons of stuff, right? We don't even know how many genes impact heart disease. It could be hundreds, right?

Brigid Bergin: Sure.

Kristen V. Brown: The other thing is I really don't want to understate this. In 2013, Angelina Jolie wrote an op-ed in The New York Times about why she was getting a double mastectomy because her mother had had the BRC genes and she did too. Her mother had died of cancer. That thing went viral, so viral. You had so many people for the first time, not just aware of the BRCA genes, but aware of the impact of genetics in general on their personal health. Some researchers actually did a study at one point of Angelina Jolie's impact. They found that BRCA testing rates went up 65% in the two weeks after her op-ed. You had a really, really incredible impact from Angelina Jolie talking about her own experience with hereditary breast cancer in her family.

Brigid Bergin: I want to bring a caller in, who I think has another question for you. Let's go to Lisa in Manhattan. Lisa, thanks for calling.

Lisa: You're welcome. My bottom-line question is I have two sons around age 40. Should they be tested for BRCA1, BRCA2? Should they have mammograms? The background is my husband and I have been tested and we are both negative. The other part of this, I have to tell you, is I have had breast cancer. My daughter, my mother, my sister, and my grandmother have had breast cancer and they have each been a different kind of cancer.

Brigid Bergin: Interesting.

Kristen V. Brown: Again, I'm not a doctor, but I do think in cases where there is that kind of hereditary link, doctors would often recommend there be a test, better safe than sorry, even if you and your husband tested negative. It would make it unlikely that your children inherited those genes, but really important to ask your doctor. I think that often they err on the side of, "Better safe than sorry," very low risk, and getting your DNA tested.

Brigid Bergin: Kristen, we have a listener who sent in a text that I'd love to get your reaction to as well. The listener writes, "I was diagnosed at 43 with advanced breast cancer. Assumed I had no family history because my mother and her mother had no cancer diagnoses. Turned out I got BRCA1 from my father. He had had prostate cancer, but that's so common in the general male population. It hadn't raised a flag." Did you come across much of that in your reporting of people who maybe wouldn't have otherwise thought to get testing done but turns out that, in fact, it was something that was hereditary?

Kristen V. Brown: Yes, I think this is where we see the damage of people really associating BRCA only with breast cancer, right? So many men report that if they do have a family history of breast cancer in their family, they only get tested for their daughters, right? They want to make sure that they haven't passed on the gene to their daughter, not even realizing that they could be at risk themselves. Because so many men haven't been tested, we don't really even understand the full risk profile for men.

As more researchers have been advocating for this, we've started to understand that, for example, not only is it linked to prostate cancer, but it's linked to extremely aggressive forms of prostate cancer, making it even more important for people to know that because prostate cancer is often very treatable. The more aggressive forms, you really often have to catch it early. You really see the damage of this link between BRCA and breast cancer because, as the caller mentioned, in their family, it didn't even set off bells that the father had had cancer. Specifically, prostate.

Brigid Bergin: Can you talk a little bit more about that, how the gene mutations and the risk of cancer show up in men?

Kristen V. Brown: Yes. Like I said, we are just really starting to understand this. It does confer a risk of breast cancer in men, although it's very, very small. In general, men have a very small risk for breast cancer in the general population. That's still true of people with BRCA genes. Men have a much-increased risk of prostate cancer as much as 60%. They could also be at risk for pancreatic cancer.

We're really starting to understand that there could be links to cancers in other part of the body that would affect both sexes like the esophagus, the stomach, the skin. That's all pretty early. As I mentioned, there used to be this idea of the genome that there would just be one gene for everything. That's really become an outmoded idea. We're seeing that with BRCA, that it's not just associated with the breast.

We're actually finding it increases the risk of cancer in general in many parts of the body. As we discover all of these other parts of the body, there's increasing relevance for men, right? Men have skin. Men have stomachs. It's really only in breast cancer that there's a much lower risk in men if they have this gene than for women, in which there's a huge, huge risk if you have a BRCA mutation.

Brigid Bergin: I want to get some of our callers. Our lines have filled up pretty quickly. Let's go to Joy on the Upper West Side. Joy, thanks for calling.

Joy: Thank you. Thanks for getting me on. I wanted to say two things. I have BRCA. I found out at age 67 quite by chance because I happened to be in a research study that did some blood analysis. That's how I found out I had it. There is no breast cancer in my family. Basically, two things I wanted to say. One is that my primary care doctor is a geriatrician. She knew absolutely nothing about this. She was like, "Oh, well, we'll just keep giving you mammograms."

Fortunately, I was talking to a genetic counselor. She said, "That's not the approach. You got to be way more proactive." See, oncologists, in the case of women, it's gynecological oncologist, because the highest risk is actually ovarian cancer, not breast cancer. Gynecological oncologists, breast surgeons, all these different doctors. Then they were immediately recommending MRIs and mastectomies and all kinds of stuff. My health is fine. I'll just throw that in.

To the man who called, who said he was 67 and just found he had it, he should really make sure he's talking to specialists, not just his primary care doctor. Because people who work with elderly folks, it's very rare to find out you have BRCA when you don't already have cancer at this age. That's the one thing I wanted to recommend. The other thing is a very specific thing. I immediately decided I wanted prophylactic mastectomies and found out that Medicare will not pay for them.

Medicare will pay for mastectomies if you have cancer. If they pay for mastectomies, they will pay for reconstruction, but they will not pay for prophylactic mastectomies with a genetic mutation that gives you a high risk of breast cancer. Don't ask me why. It's the craziest thing in the world, but that is something people should be aware of. If anybody is fighting on Medicare coverage, that's pretty outrageous. That was all I wanted to say.

Brigid Bergin: Joy, thank you so much for that call. I want to get another caller in. Let's go to Liz in East Brunswick, New Jersey. Liz, thanks for calling.

Liz: Thank you. Good morning. I was telling your screener that I had been diagnosed with uterine cancer. Due to my Ashkenazi background, they asked if I wanted to be tested for BRCA also, which I said, "Okay." There was no history of cancer in my family. However, I was tested. I did not come up positive for BRCA, but they did find two variants. As a result, I am having yearly mammograms, as all women should.

In addition, I'm having yearly MRIs to also look for any evidence. Thankfully, they've been negative. My kids should also be tested. They're in their 30s and a little stubborn since this could be very well genetic. It can lead to breast cancer in men. I have a son and a daughter. Also, colon cancers. The risk is small, but this is something that I learned from my experience.

Brigid Bergin: Liz, thank you so much for that and I'm glad to hear that you're doing well now. Let's go to Kostoff in Plainview. Kostoff, thanks for calling.

Kostoff: Yes, hello. I'm actually a longtime listener, so it's great. The first time I'm actually calling in. Basically, I'm a 41-year-old male, who my mother had a history of, basically, we lived with it, ovarian cancer and then breast cancer about 12 years apart. Thank God she survived, had to go to treatment. She was confronted with the choice of lumpectomy, mastectomy. She chose, at her age, lumpectomy. In between that, she had tested positive for the gene.

Basically, I was always told to test as well. I finally proceeded with it. She's doing well, by the way. We were looking with my wife for fertility treatments. As part of that, we went through the genetic testing. In doing that, I learned that I'm also BRCA-positive. Actually, on two fronts, it influenced that I'm going and I've told my doctors and I'm screened for other cancers. "I know you're at high risk for breast cancer, but also prostate." I've also tested. I've got abdominal MRIs for possible pancreatic cancers.

I told the screener, which is interesting, me and my wife, we made a decision that it influenced, during fertility, what type of offspring we would want for the sake of the chances that I would basically-- being a carrier, I would have a 50% chance of having that to an offspring. With that, that influenced us in how we proceeded with that track. That's just another point. All this research was done at this point, me being at my age, more in the fertility and looking for at that stage of my life.

Brigid Bergin: Kostoff, thank you so much for sharing your experience. Kristen, I'm sure you have a lot of reaction. We've got so much richness in what our callers are sharing between the insurance and Medicare challenges, but I want to get one more caller in because we are both journalists. Susan from Brooklyn is the physician. Susan, welcome to WNYC. Thanks for calling.

Susan: Okay, thank you. What I was always taught in medical school is that 10% of all breast cancers, not just BRCA, are men. If any man has breast cancer of any type or a cancer of any type in his family, he should include a mammogram. I have a friend who did that and turned out positive and is being treated. There's no reason to think that because a man doesn't have women's breasts that he can't get breast cancer. They can. Mammography should be included in screening in any genetic type of cancer.

Brigid Bergin: Susan, thank you so much for that call. Kristen, before I let you go, I'm seeing texts and callers with the question, "What's the best way to get screened for BRCA?" One listener said she had a test kit at home. How difficult is it? Is it covered by insurance? How should people proceed in terms of deciding whether or not to get tested?

Kristen V. Brown: I think that if you don't have a family history, unless you're adopted and you don't know your family history, if you know your family history and there's no family history of breast, prostate, pancreatic cancer, then you don't need to get tested. It's probably not worth it. If you do have family histories of any of the cancers associated with BRCA or maybe even just any cancer since we are expanding the numbers of cancers associated with the gene, then you need to talk to your doctor. Often these days, insurance does cover it. I know some patients face struggles in getting their insurer to cover it. More and more often, insurers are realizing it's in their best interest to get people tested so that screenings can happen, so that anything can be caught early, which costs insurers less in the long run, right?

Brigid Bergin: Sure.

Kristen V. Brown: You definitely should not do a consumer test like a 23andMe test as a way to find this out. Those tests do not test for as many variants as a clinical grade test would. They can be misleading. A lot of the times, people will do those tests, which I think now test for something like 40 variants. They'll say, "Oh, I don't have it," but the truth is they just hadn't tested for all of the variants. They might have one of the ones that was left off of there. If you are concerned, if you do have a family history, go to your doctor. Have them prescribe you a clinical grade test. Do not do a consumer test.

Brigid Bergin: Really fascinating. I want to thank my guest, Kristen V. Brown, staff writer at The Atlantic covering health and science. I want to thank all of our callers who called in with their stories. Really, really valuable. Kristen, thanks so much for coming on.

Kristen V. Brown: Thank you.

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