In this Breastcancer.org podcast, Harvey Singer talks about his diagnosis of breast cancer and awareness of male breast cancer in general, especially during October. With his sister Vicki Singer Wolf, a three-time breast cancer survivor, Harvey is the founder of the HISBreastCancer Awareness, Inc. Foundation and HISBreastCancer.org. He also wrote the book Sir, You Have Breast Cancer! My Life and the Story of a Man with a Woman’s Disease.
Listen to the podcast to hear Harvey talk about:
- the shock of his diagnosis
- how he made his treatment decisions
- how perceptions of male breast cancer have changed
- risk reduction advice he recommends for men at high risk
Running time: 36:27
These podcasts, along with all the other vital content and community support at Breastcancer.org, only exist because of the generous donations of listeners like you. Please visit Breastcancer.org/support to learn how you can help keep our services free for you and the millions of women who depend on us.
Show Full Transcript
Jamie DePolo: Hello, everyone. This is Jamie DePolo, I’m the Breastcancer.org senior editor. Welcome to this edition of our podcast. Our guest today is Harvey Singer, who is the cofounder of HISBreastcancer.org, a website devoted to male breast cancer.
In 2008, an old friend gave Harvey a bear hug that caused shooting pain through the left side of his chest. He was diagnosed with breast cancer in October, learned he had an abnormal BRCA2 gene, and had a mastectomy to remove his left breast. Harvey and his sister, Vicki Singer Wolf, a 3-time breast cancer survivor, founded the foundation HIS Breast Cancer Awareness, Inc. And HISBreastcancer.org is the website that goes along with their foundation. They founded the organization in 2009 because they could find little information about male breast cancer.
Harvey, welcome to the Breastcancer.org podcast.
Harvey Singer: Thank you, Jamie. Happy to be here to help.
Jamie DePolo: Yes. Thank you so much. So, you have said that your mother and your sister were both diagnosed with breast cancer, yet you were still pretty shocked when you were diagnosed as a man. So can you tell us a little bit about what you knew, or really didn’t know, when you were diagnosed?
Harvey Singer: Sure. My mom and my sister were actually diagnosed a month apart, which is kind of weird in its own way. My mom was diagnosed in her late 60s, and my sister, at 35, said, “You know what, maybe I should go get a mammogram.” She went a month later and found out that she was also carrying a cancer in her right breast. From that point, she went through the lumpectomy and decided not to do anything additional at that point. The margins were clean. She went back about a year later as a second tumor showed up, and at that point she had another lumpectomy followed by some radiation, and then she decided to get tested for the BRCA gene to see what was causing it.
She had looked back into our family’s history, and there was a lot of cancer. My mom’s sister is also a breast cancer survivor, and my mom lost both of her brothers to cancer in their early 30s. So, she went and got tested, found out she was BRCA2-positive. She called me and told me the diagnosis and warned me that I could be carrying the BRCA gene. I said, “Well, okay, but I’m not going to get breast cancer. I’m a guy.” She goes, “Well, you can get other things like prostate cancer, pancreatic cancer, that BRCA can cause.” And I said, “Okay, thanks for the information.” And I just kind of put it to the side because I said, “I’m a guy, I’m not going to get breast cancer.” And I didn’t really buy into all the other stuff. And they didn’t really understand the whole BRCA thing at that point. Then, in 2008, as you mentioned, I was with a bunch of guys at a football outing and an old friend gave me a big bear hug, and I got this shooting pain.
I had actually noticed symptoms for about 3 months prior to the hug. I noticed an indentation of my left nipple, I noticed all the telltale signs that I know now that I did not know then and ignored them. I said, “Oh, it’s folding over. I’m a little overweight. I’m not taking care of myself.” As guys, we tend to make excuses for everything medical. Guys hate going to the doctors. Guys hate to be diagnosed with anything, so they make excuses for everything.
It wasn’t until that hug that I said, “Okay, something’s up here.” And I went on return from that trip to my internist. She took about a minute to put her hands on my chest and said, “I’m sending you for a mammogram.”
Jamie DePolo: Did you think breast cancer at the time? When you got the hug and when you had the different symptoms?
Harvey Singer: Yeah. As soon as I did, I started poking around and I thought I felt something abnormal. I actually came home, I showed my wife. I said, “Feel this,” and my wife said, “Oh, you’re always looking for something. If you’re bothered by it, go see your doctor.” So I did. I called. I made an appointment. I actually had a business trip that week but I made an appointment for Friday. So it was on a Friday afternoon that I finally got in to see my internist, and she immediately felt what I had felt, a little nodule underneath my left nipple, and said, “I’m sending you for a mammogram.” Which I said, “How are they going to do that?” And she said, “Well, I want you to go, I want you to go today because I don’t want you to worry about it all weekend.”
And at that point I put everything together -- my sister, my mom, the BRCA diagnosis. I knew something was up. I had been experiencing some issues with my prostate levels, my PSA levels, so I just put it all together and I said, “Okay, I’m going there. I know what they’re going to find.” And I kind of knew right away.
So I went and had the mammogram followed by the ultrasound, which was calcified, which is the other -- come to figure now, I understand it a lot better now -- calcification is a dead-ringer sign for a mass, a cancerous mass. And then the following week a needle biopsy and onto the surgeon and a full mastectomy of my left breast.
What I didn’t understand at the time was -- and what my sister didn’t even understand -- was that I couldn’t do a lumpectomy. I think that’s a real misnomer with guys. Women tend to catch cancer early in their breast. They can have a lumpectomy. They can’t do that with guys. There’s just not enough breast tissue. So they have to remove the entire breast from the area including your nipple, areola, and everything else that goes with it.
Jamie DePolo: And did they take chest wall muscle as well for a mastectomy with men?
Harvey Singer: No. Just breast tissue. All the margins were clean. I had a sentinel node negative, so that was clean. But when the pathology came back from the tumor, it was a high Oncotype score. For a while they thought I was HER2-positive, which turned out to be incorrect.
But I went on to see oncologists who decided I should have some sort of chemotherapy. I went to see three other oncologists for second and third and fourth opinions to try and change up the cocktail, because they all seemed to have differing opinions of what to do for me. And I ultimately made that decision on my own as to which chemotherapy treatment I should have.
Jamie DePolo: Okay. And when did you decide to have the BRCA testing?
Harvey Singer: Well, I kind of knew what I had, I knew what was causing it. I did a lot of homework, through a lot of research -- which is one of the impetuses that caused us to start the foundation. It was very frustrating to not have any information for guys. I could not find a single piece of relevant information about a guy outside the fact that they treat you like a woman and some other websites that were dedicated to families that had lost their brother or father to breast cancer. That’s what I found on the web. And it was night after night of frustration. Finally, that was the impetus that caused us to say, “You know what, I’m going to do something about this.”
I knew deep down I had the BRCA2 gene or I wouldn’t have gotten this. I read enough to know it was either environmental or more likely genetic, and BRCA2 runs rampant in the Ashkenazi Jewish faith, which I am. So, we didn’t actually test until after I completed chemotherapy. I went through the test, and when the geneticist came in with the results, he looked at me and he goes, “Well, I guess we found out what we already knew.” I had given them my sister’s BRCA test results, and they know exactly what to look for and it was there.
And then it became, “Oh my God, did I pass this to my kids.” That became the next important factor to me. Irony had it, I knew I had it before I was tested, I knew I was dealing with it. But when you think about passing something like that along to your children, it was really difficult. Now, between Vicki and I, we have five children. They’re all boys, which was another main reason for us to start HIS Breast Cancer Awareness. We needed to change the rules of engagement for the boys, for the men that are dealing with this. The men are so swept aside in this whole thing, it’s ridiculous. I think today it’s better than it was 6 years ago when I was first diagnosed. But I still feel like today it’s like where women’s breast cancer was in the late 50s/early 60s. Nobody wanted to talk about it, it’s pretty hush-hush. Women had breast cancer in the 50s and 60s, but nobody ever said anything about it. Nobody wanted to know you had your breasts cut off. Today, with Pink October and everything, it’s front-page news for everybody. It’s become -- which is another sore subject for us.
We’re not big on the whole Pink October. As a matter of fact, our identification ribbon is half pink/half blue. We’re just trying to make a difference for guys, and we’ve done that. We have guys that contact us from all over the world looking for information. We don’t give them medical information. We may tell them, “This is what I did.” We’re not allowed to and we don’t want to. We can just lay out the facts and let them make their best choices. We do have five, or six now, prominent physicians, surgeons, oncologists on our board who kind of stay on top of our website and make sure that we’re not saying anything that’s irrelevant or inaccurate. So we go from that regard.
Jamie DePolo: Let me ask you something, too. How old were your children when you were diagnosed?
Harvey Singer: It was 6 years ago, so my oldest was 25, my youngest was 23. Both already through college, on their own, living out of the nest. They understood everything that was going on. I kept them in the loop. I didn’t want them to come home while I was going through chemotherapy because I just didn’t want them to have to see that. They had kept offering and I kept saying, “No, I’m fine, I’m fine,” you know. They’re very well-educated now. And my sister’s three kids are about the same age, actually, and one of them has actually just graduated. He’s a naturopath, he’s an ND, naturopathic doctor. And her older is the president of Lucky Vitamin, which runs a major supplement company. And my sister’s husband is an ex-pharmacist. So we’re pretty well-educated on a lot of the topics that go with it. It just helped us a lot with the foundation and making relevant information available on the foundation site.
Jamie DePolo: Sure. Did you suggest to your sons that they get tested for BRCA?
Harvey Singer: We’ve talked very long and lengthy about it. The national standard according to the Basser Center for Research, for BRCA Research, which I think is the governing body these days, together with FORCE, Facing Our Risk of Cancer Empowered -- I was on one of their seminars, webinars, about 2 months ago. The average age they’re suggesting for BRCA testing for parents who have kids, for boys, is 35, unless you’re going to start a family, in which case you want to know earlier.
Both my boys are single at this point. One actually has just recently been tested. One still is in the process of counseling and is in the process of testing. Thank God, my younger one got tested first, and he was actually negative.
Jamie DePolo: Oh, that’s good.
Harvey Singer: Yeah, that was a hard day knowing that, when that decision was coming down. I was actually with my therapist, and I said I was very, very nervous about how I was going to handle the results. Like I said, the hardest part to me is dealing with the fact that I may have passed this along to my children. My older son is still not sure what he is yet. He hasn’t been tested yet.
Jamie DePolo: But it’s certainly not something you can control, so…
Harvey Singer: No, no. My mom gave it to me. We know where it came from now. Although my mom’s never been tested, but we know where it came from because there’s just nothing on my father’s side that’s relevant to it. Oddly enough, my sister and I have an older brother who has a daughter, and he decided to get tested, and he was also positive and so was she. He has a 24-year-old daughter who’s positive now, too. Thank God he hasn’t had anything to deal with. My sister’s had that, I’ve had both breast and prostate cancer, BRCA-induced. So education is the key. My kids are very smart. They understand all the ramifications. We’ve been able to change their diet and exercise and alcohol intake, as much as you can with a kid in their 20s and 30s. But they understand the power of understanding your body and what you’re putting into it.
Because as much as I believe that BRCA caused it and everything else, I still believe that we all make cancer cells and we can keep our immune systems strong to fight those cancer cells by reducing your sugar intake, by reducing your alcohol intake. Eating organic foods rather than infused with pesticides or other environmental toxins they might put into the foods. And, for breast cancer, to avoid hormones in the animals that they’re eating, because most breast cancers are hormonally driven. Which is why I don’t believe that men should be treated like women, because we create different hormones at different levels, and when you have a hormonally driven disease you should understand that.
Jamie DePolo: Taking off a little bit about that, about treatment, when you were diagnosed, as you said, there was not a lot of information out there. You said you got third and fourth opinions about what sorts of chemotherapy you should have. How did you educate yourself, I guess I’m wondering, how did you make those treatment decisions with very little to go on?
Harvey Singer: Reading as much as I could. Getting the best oncologists in the country to allow me to visit them. I accessed the San Antonio Breast Cancer Symposium website, one of the oncologists gave me her keys to unlock all the studies. I read everything that took place in the 2009 San Antonio Breast Cancer Symposium. Education’s the key. Knowledge is the key. Trying to figure out the roadmap that you’re going to take to deal with your specific cancer.
Nobody has the answers. I say this often to people who contact us through our website. Doctors are just guessing at what to give you. They’re using their best estimate, they’re best guesstimate. They’re using statistics and studies, and most of them follow whatever major cancer center they tend to reach out to -- Sloan Kettering. My attending oncologist is a Sloan Kettering girl. She kind of goes with whatever Sloan Kettering puts forth. Some of the more progressive ones are on the west coast. It’s really, there’s some geography to it.
There’s a lot of, you know, MD Anderson has their theories, Sloan Kettering has theirs, Basser now has more information than anybody when it comes to BRCA-driven breast cancer. So, you just need to have knowledge, and I can’t tell you how many sleepless nights I spent just sitting on my computer looking at things, reading things, and seeing what I could find to give myself a fighting chance. I just didn’t want to be another statistic. I wanted to be able to make those decisions on my own and not let somebody -- most people today just follow whatever their doctor tells them. I’m just not cut out that way. I can’t make decisions that way, and neither is my sister, Vicki. We’re very, very educated in what we’re dealing with. And we decided to form the foundation to help others with that decision if they want us to help them. We’ll help direct them. We’ll teach them how to get educated. Sometimes you just get railroaded through the system, and if you live you go into column A and if you die you go into column B, and they use that for the next person. And I just didn’t want to be that person.
Jamie DePolo: Now, let me ask you this, too. Well, actually I have two questions. I know that there is not a ton of research on male breast cancer just because the critical mass of diagnoses is not as large as women. Did you consider… were there any clinical trials that would have been a good fit for you?
Harvey Singer: There were none. I tried. I wanted to be in them. There were none. There’s about 2,400 cases annually diagnosed in the U.S. About 400 of those will die annually. The death rate, the mortality rate for male breast cancer versus female breast cancer is almost 4.5 times as high. That’s because of lack of screening, lack of information, lack of knowledge to know what you’re dealing with. I can’t tell you how many guys I’ve talked to that had symptoms for years and years and went to their primary physicians, and their primary physicians told them it was nothing. Or it was gynecomastia. Or it was something else, and it wasn’t until it was stage III or beyond that they finally diagnosed it. So, the outcomes are poorer in that regard. So, we teach self-breast exam. You go to our website, you’ll see. We teach you how to self-breast… you’re standing in front of your mirror every morning shaving, although it’s Movember, so I’m letting a little bit grow out this month. Look down, just look at your chest. Does it look the same on the left as it does on the right? And mine didn’t, and I ignored it for 2 months, 2.5 months.
I mean, I was ignorant. And fortunately, I still caught it early enough that it was stage I, and I was able to take care of it for the most part. I still had to go through 3.5 months of chemotherapy, but maybe I wouldn’t have had to go through that if I caught it earlier. I don’t know. But if you can catch it early, you have a chance. But there’s no clinical trials because there’s not enough men to partake in those trials.
Jamie DePolo: Now, the self-breast exam, is that something that your foundation recommends for all men? Or is it for men with a strong family history? Or, what do you suggest?
Harvey Singer: Well, I think it’s obvious if you have any family history that you should be doing this once a month. We recommend it for everybody. We recommend it for our children. I got on the pulpit -- most of the guys my age, 40+, go for a physical every year. They’ll do a variety of tests. One thing they never do in a physical exam by your internist is check your breasts, as a man. If you’re a woman and you go in for a physical, Jamie, yeah, I’m sure you know this, they check your breasts. So, I preach to every guy when you go for your physical, ask the doctor to check your breasts. You should be doing it yourself, but he’s a little better at it. He’s more knowledgeable. Let him do it. It takes a whole minute to do. And if you ask him, he’ll do it. But the internists just don’t do that as normal course of a physical. Why not? It doesn’t hurt. It’s not painful. It doesn’t take much time, so why not do that?
So, as a guy, we preach when you go for your physical, ask your internist to check your breasts. Once a month, you’re in the shower, lift up your arm, run two fingers around in a circle. It’s on our website. You’re standing in front of a mirror, look down, make sure there’s no difference side to side. Very easy things that could really save your life.
And we understand, most guys, “Well, I’m not going to get it.” It’s only 1 in 100 breast cancers are male. It’s only 1% of all cancers in men are breast cancer. I got it. I got all the numbers. But I defied all those odds and so do 2,400 people in this country that are men every year. If 2,400 people went down in a plane crash, we’d sure hear about it, it would be all over front-page news. But because it’s male breast cancer, nobody seems to care.
Jamie DePolo: Right. Now, do you suggest the age to start the exam, is that 35, 40? Roughly the same age as women? Or earlier?
Harvey Singer: I started telling my kids as soon as I knew, and they were in their 20s. I mean, to get BRCA tested -- Basser recommends somewhere around 35, unless you’re going to start a family, to get BRCA tested if there’s family history of BRCA, like your sister or your mother. Most people don’t know that you can get BRCA from your dad or from your mom, and it could be to your daughter or to your son. They just think it’s a women’s thing, and it’s not.
Angelina Jolie made it very popular. She got BRCA1, she found out she was BRCA1, she lopped off her breasts, she built new ones. That really has very little to do with a guy. But they made it very, very important. It became front-page news all over the place. I was glad because it brought BRCA to the forefront --
Jamie DePolo: I was going to say, it did get more people talking about it.
Harvey Singer: Oh yeah, it definitely helped. It just didn’t help as much from the male side because it was never mentioned. And every time I saw an editorial -- and it was front-page news everywhere, my local paper, your local paper, magazines, the cover of People, every newscast, they were all talking about it. But you never heard the word “male” associated with it. And every time I saw and I wrote to the editorial department of that paper or news organization and said, “Hey, guys can be BRCA, too. As a matter of fact, the statistics are 50% of the BRCA carriers in the world are male. So when you’re going to talk about something, let’s not just sweep away half the people that are carrying the same genetic code mutation and that can pass it to their children. Let them understand.” It’s been an uphill battle. It’s gotten better. But it’s just like Pink October. There’s nothing to do with men in October.
Jamie DePolo: Now, do you think the perception of male breast cancer has changed since you’ve been diagnosed?
Harvey Singer: Definitely, definitely changed. It’s definitely more prominent. I like to think that we’ve had a little impetus in helping that, but there’s a lot more organizations now that we’ve come out. We were the first we could find. There’s a couple documentaries being made. There’s a documentary called Pink and Blue due out this spring that Vicki and I are part of and our organization is part of. And they found a lot of organizations that were kind of hidden in the bushes, and they’re bringing it all out. Alan Blassberg, who was the director and producer of this film, was just actually nominated, I don’t want to get this wrong, but the… United States National Jewish Federation as being one of the 40 most influential Jewish people in the country for making this film. It’s definitely better than it was. There’s still so much further to go.
We talk about the NFL, my sister and I, all the time. The NFL, major, powerful organization catering to a 70% male audience, goes pink for an entire month and not once do you ever hear them say, “And guys, you can get breast cancer, too.” And I can’t tell you the amount of letters and tweets and things we’ve written to the NFL commissioner’s office trying to get them to incorporate guys into this. I mean, they’re spending millions of dollars, they’re collecting more than that on the sale of this stuff. But they just don’t, their primary audience they don’t talk to. And if they just say, “By the way, guys, you can get this, too, you might want to just check yourself once in a while,” something easy like that. But they won’t go there. So, it’s a little frustrating. We’re going to keep banging.
Jamie DePolo: And you’ve mentioned October a couple times with breast cancer awareness. I know we surveyed our community members about their feelings about October. And many of them, the majority of them, felt that there was not enough attention paid to male breast cancer, not enough attention paid to metastatic breast cancer. And I know everything’s pink. And crazy things are pink, like drill bits are pink and fracking bits are pink and things that you would never associate with recovering from breast cancer.
What, in your mind, ideally, would October look like if it incorporated men and women? What would you, in your dream world, what would you like to see happen in October?
Harvey Singer: Well, I have a couple problems with October. First of all, the awareness of October has made breast cancer more aware but people think it’s a one-month-a-year disease. It’s like the other 11 months don’t count. It’s only popular in October. I can’t stand the way all these companies have latched on for their own personal benefit. Pink sunglasses. You mentioned it. You see everything turned pink, and how much of that money is actually going to research? From the statistics I’ve researched, very little is going to the hard research the doctors are doing. And from the male side it’s even less.
Every October, I start in August, and Vicki and I start writing to all the news organizations and any place we can get on. One year I crisscrossed the country. I went to every local news organization, got on TV in Chicago, Tampa Bay, Los Angeles, trying to get awareness for the male side as well. And a couple of progressive stations took the bait and let us on and let us get our message out, which in turn seemed to… We can tell by the number of hits to our website, we can tell that it just increased the awareness on the guy side. We did a campaign with a prominent -- I won’t mention her name -- cosmetic company who contacted us this year. They spend a lot of money, they have a huge foundation for breast cancer awareness. Vicki and I flew in. They paid us for our time. They paid all our expenses. They wanted the male side of it. When it came down to October, when it started running and we saw the finished product, they cut us out and there was no mention of males anywhere. And they had told us that they were doing this specifically because they wanted to focus on the males and minorities. And they had some minorities, but they had nothing to do with the males.
Vicki and I talked about it afterwards. Said, “Well, they paid us for our time and the money for the foundation, but they didn’t do what we wanted them to do.” It’s not about their small donation, it was about letting them help us get the word out. And they just cut us from it. They told us after the interview how great it was and how great we were, and the president of the company still actually writes me on occasion, says, “Oh yeah, we apologize for not using it,” blah, blah, blah. “It’s just we didn’t feel it was right for our audience in the end.” Because their audience is cosmetics and it’s mostly female, I’m guessing. I don’t know. And I said to her, “Don’t those cosmetic-buying females have husbands and sons and brothers?” And they just don’t look at it that way.
So, it’s kind of frustrating. What I would like it to be would be equal, but it will never be that way. So I would like it to be 5%, just 10% of the message that comes out in October. Just add a tip of blue to the pink ribbon somewhere and explain that guys can get this and guys can pass it along. They don’t even have to have it, they can pass it to their daughters. They can pass it to their sons. Try and make it more prevalent for everybody. It’s an uphill battle, but it’s a battle we’re going to continue to fight every day as long as we live.
And we’ve made ground. I can’t say we haven’t. We’ve definitely made some headway. It’s more prominent. When this film comes out, Pink and Blue comes out, I think it will help. I don’t know if you saw Decoding Annie Parker, I’m sure you saw that film. That helps a little bit but that doesn’t talk about the guys either too much. It just talks about the BRCA gene.
So, it’s a combination of things. Making people aware, and October is just one month of twelve. And if you’re a breast cancer survivor, it’s an all-year-round business. It’s like people say, “Oh, so you’re cured now.” Or you’re cancer-free. And Vicki and I subscribe to the fact we’re never cancer-free. Nobody that’s ever had cancer is ever totally cancer-free. We don’t believe in the word remission, either. We believe that right now I don’t have cancer that’s detectable, but I’m sure there is cancer in my body and I have to keep fighting every day.
I remember the conversations with my oncologist 5 years ago when she asked me how much alcohol I drink. I wasn’t a heavy drinker, but I do travel for business and I was a social drinker. And she said, “You know, one or two drinks a day is okay.” And then the following year it was like, “One or two drinks a week is okay.” And then the following year it was, “One or two drinks a month might be more what you want to do.” And when I saw her this summer, she said, “You might just want to stop drinking because now they’ve found a direct link between alcohol and breast cancer.” And I think alcohol and most cancers.
Personally, I feel that I’ve always known that there was a process there. But I think it’s a fact that alcohol becomes sugar in your body, sugar depletes your immune system. That’s why I’m very careful how much sugar I intake. And if your immune system is depleted, your ability to fight cancer cells that we all have, even the ones that don’t have diagnosis of anything. The ability to fight those cancer cells off with your immune system is what keeps you healthy. If you deplete that system, which alcohol does, you’re going to make yourself more susceptible to disease.
So, hopefully October will become a little more blue as we go forward and the rest of the year will be just as much pink and blue, and it won’t be a one-month-a-year disease. And these other companies won’t just do it for financial benefit, which is what I think is actually taking place.
Jamie DePolo: Now, you talked a little bit about this earlier and just now about risk reduction. Are there steps, I know there are steps that men can take, but are there different steps that men should take if they know they’re at a high risk of breast cancer? Like if they have an abnormal BRCA1 or BRCA2 gene? You know, we recommend on our website some of the things you talked about: avoiding alcohol, not smoking, healthy diet, maintain a healthy weight, exercise. Is that basically it for men, too? Are there other things that you would recommend or that your foundation recommends?
Harvey Singer: Yeah. If you’re BRCA-positive, you know you’re BRCA-positive, we suggest screening. Screening like a woman screens, maybe even more vigilantly. Vicki and I both go on alternate schedules. At 6 months, MRIs with contrast of our breast, 6 month mammograms. I go once a year for an upper endoscopy to screen my pancreas. Pancreatic cancer is another derivative of BRCA. And at first my GI, who I’ve known forever because I’ve have colitis forever and I get colonoscopies every 18 months anyway. When I said this to him, he said, “Well, there’s only one guy in the whole city of Rochester that does this.” And he referred me. The doctor looked at me and said, “You just want me to screen this because why? You having any symptoms?” I said, “No. But I just want to know if you can see any lesions on my pancreas.” And he did it and said to me, “It looked clean, I’ll see you in 5 years.” I said, “No, you’ll see me pretty much every year.” I don’t care. I’ll do whatever it takes to be ahead of the curve. I know the only way to beat pancreatic cancer is to catch it before it actually happens or when the lesion is starting. The problem with pancreatic cancer is it’s asymptomatic, so by the time they figure it out it’s usually too late. That’s why there’s such a high mortality rate with it.
So, if you’re carrying a BRCA gene and you’re a guy, there’s no reason why you can’t go get a mammogram once a year. Most insurance companies, as a carrier, will pay for that. Under new healthcare laws I can’t tell you that every insurance company will. I know my kids can, starting at 35 they will do it. And if they would do it earlier and the insurance companies pay for it, I would have them do it earlier. But right now they’re just being self-vigilant. So, you can be screened. You can just be knowledgeable and you can reduce your risk by what you eat, who you are, exercise 5 days a week, 45 minutes, not that difficult. We can all do something like that, it keeps your body strong. Watch your hormone intake. Make sure your chicken, your eggs, and your milk, if nothing else, is organic. We totally believe in that side of it because those hormones that they feed them are hormones that breast cancer lives on.
That’s our regimen. That’s the way we live. It’s not always the easiest way to live. I play golf with a lot of guys. We come in from our golf late on Wednesday night, everybody’s drinking, I’m not. It’s hard to be unsociable that way, but it’s okay. It’s fine. The bigger part of breast cancer when I was diagnosed was the stigma of being the guy with a woman’s disease. You know, my friends would tease me.
Jamie DePolo: Really? They actually teased you?
Harvey Singer: Well, in good jest. They knew what I was going through. But it became a little bit of a running joke. The group of guys, the guys that I was with when I first discovered that I had an issue, we’re all from Philadelphia, we’re spread out all over the country. We meet once a year for an Eagles game either in Philly or somewhere else. I’ve always been the CEO for Life, as they pegged me, because I do all the organization for it. And they’ve renamed me OT, meaning One Tit.
The stigma going through it, it’s better now than when I first started. You have to go to get your mammogram, you have to fill out the forms. You have to draw on the diagram, with this woman with, like, 36D breasts, where you might have any issues.
Jamie DePolo: So the forms have, there’s not a male form?
Harvey Singer: Now there is. After a couple years of my complaining to my radiology group about it. I said, “You know, this is not that difficult a form. Can’t you just make a different one for guys?” It’s kind of embarrassing when you’re sitting in a room with a bunch of women. Or they give you a robe with a pink ribbon on it. You’re there, everybody’s getting their mammograms. I don’t know. Some of those stigmas are really, really difficult to overcome.
When I started seeing my oncologist for the first time, I went in and I was sitting in a room with all these women. My wife came with me. And we saw somebody that we knew, who unfortunately had been there. She came up and she went, “Oh no, Donna, not you, too!” And my wife looked at her and said, “No, Harvey’s here for his appointment.” And she just had this blank stare on her face. She couldn’t believe it was a guy sitting in this room.
I filled out the form and they were asking me questions like, do I have vaginal dryness? The first time I filled out the form I looked at my wife, I said, “Do I have vaginal dryness?” And we just started laughing about it because they couldn’t take that off the form, they couldn’t change it. It was also what caused me -- I don’t know if you’re aware, I wrote a book about this called Sir, You Have Breast Cancer. It’s the story of a guy going for a woman’s disease, and it talks a lot about the things that went on through that process that were just ridiculous. But looking backwards, you just have to laugh about them and hope to change them. And we have been able to do that.
Jamie DePolo: Which is great. Harvey, thank you so much for joining us. I just, it’s been so enlightening to talk to you, and I’m so happy that hopefully maybe with this podcast, we can raise the awareness of male breast cancer just a tiny bit more. Thank you so much for being our guest.
Harvey Singer: My pleasure. Every guy we can make a little bit more aware, maybe save a life or two or three, is helpful. So I appreciate you doing this, and I appreciate you having me on.
Jamie DePolo: Thank you so much.
Harvey Singer: All right, Jamie. Stay well.
Can we help guide you?
Create a profile for better recommendations
Breast self-exam, or regularly examining your breasts on your own, can be an important way to...
Eating When You Have Nausea and Vomiting
Almost all breast cancer treatments have varying degrees of risk for nausea and vomiting. Some...
Tamoxifen (Brand Names: Nolvadex, Soltamox)
Tamoxifen is the oldest and most-prescribed selective estrogen receptor modulator (SERM)....