Today we have a special episode in honor of male breast cancer awareness day. Four Male Breast Cancer Coalition members, Ron Rapaport, Jeffrey Flinn, Bret Miller, and Pat Washburn, share their compelling stories. Unfortunately, male breast cancer is often overlooked even though it affects 1 in 833 men. We hope this episode raises awareness and educates you about this deadly disease. Their stories are inspiring and educate us about what to look out for in ourselves and our loved ones. You don’t want to miss this episode.
Ari: Welcome to whisper and bricks. My name is Ari Schonbrun. I’m your host, we have a special episode of whispers and bricks today. Now most people don’t know that today. Thursday October 7 is international male breast cancer awareness day. Now, like most people, I had no idea there was such a thing as male breast cancer. It wasn’t until I met Ron Rapoport and heard his story. And my eyes were open to this deadly disease that affect one in 833 men that I decided to help spread the word about this cancer. So I invited Ron to come on the show. And he brought with him three people who will share their insights and their own personal bricks that they were hit with. Please help me welcome Ron Rapoport, Jeffrey Flynn, Brett Miller, and Pat Washburn. Welcome, everybody. And thanks for coming on the show. As everybody doing
Ron: very, very well.
Ari: Right. Awesome. Now you the commonality here is obviously you’ve all been hit with this brick called male breast cancer in some way, shape, or form. Now, Ron, let’s start with you. Why don’t you tell us a little bit about the male Breast Cancer Coalition better known as MVCC, and what they do, and then tell us a little bit about your story.
Ron: Okay, well thank you already for for having a son and for airing this on our first International Male Breast Cancer Coalition Awareness Day. So who is the male Breast Cancer Coalition. We are a not for profit, advocacy organization bringing everyone together to educate the world that men have breast tissue, and breast cancer does not discriminate. We are 1% of the total breast cancer cases in the United States. There are approximately 2600 cases a year diagnosed and we lose approximately 500 men a year to the disease. Compare that with testicular cancer 10,000 cases a year and they lose less men. The reason being there’s a lot of stigma, there’s a lot of embarrassment for men, and we’re trying to get over that. The chances of getting male breast cancer cancer, as you mentioned is one in 833 up from the previous one in 1000.
A good amount of our men are diagnosed at stage three, they waited too long. Because of like I said, the stigma or embarrassment. Our goal already is that no man will ever feel alone. When hearing the words you have breast cancer. We have a very informative website www male breast cancer coalition.org We have a downloadable self exam card and video showing how to properly do a breast exam. We have a brother to brother program for newly diagnosed men, where we match them up with other men that have gone through a similar path. We have a virtual support group monthly globally for our men around the world and in the United States. And we also have a patient and caregivers support group a virtual support group. We help our men get enrolled in clinical trials. We work with researchers to include our men and studies. We speak at schools, churches, radio, TV, podcasts like this to share our journeys. And we partner with cancer organizations throughout the world. We have even gotten herself. Exam cards published in many languages. And recently, we got it just translated into Hebrew. We lobby for more funding for clinical trials and research and we attend conferences to educate ourselves from experts in the field. So my story, I’ll make it as brief as I can and late 2018 I noticed my left nipple was puckering in a little bit. And by New Year’s Day it got they got more pronounced and I had a nasty fall that year. I I had to go to the hospital. I had influenza B and I had dehydration so that whole area was messed up for a long time a cracked some ribs. So I showed it to my wife and my wife said oh, you’re going in for a mammogram and I looked up male breast cancer signs and symptoms and I saw a nipple retraction was was listed but then I read the chances of getting that are one in 1000. So I figured out you know probably nothing Probably healing up anyway, I went to the imaging center. And that’s where I first got introduced into what we call being a blue.in. A sea of pink. I filled out the forms at the imaging center. They asked me when my latest pregnancy was pink robes, the whole thing. So I felt really out of place anyway that the lady called my name. I went up there and she said, No, I need your wife. And I said, I showed him my white armband. She said, Oh, we’ll have to get you a room. Well, that was that was my introduction to being a blue.to see a pink. So walk into the room they do the mammogram, the first thing she asked me, she says, By the way, are you Ashkenazi Jewish? I said, yeah. Oh, well, you know, you got a higher a higher risk of getting breast cancer. I said, Oh, really? I didn’t know. Okay, so anyway, they did the mammogram on the right and the left the left was the one that was in question. The right was fine. The left they still weren’t sure about. And even when I went to the doctor, and they looked at it, they they weren’t sure anything was wrong. So they said, Okay, we’re gonna go to the next room, we’re gonna do an ultrasound. They’ll radiologists to come back in a few minutes. Well, the nurse came back. She said, We don’t know what it is. We think it might be a calcium deposit, we’re not sure we need a biopsy. It did a biopsy. And about three or four days later, they diagnosed me with infiltrating ductal carcinoma of the left breast. So and I did a genetic test, and I do not have any bracha gene mutation. So I don’t know where I got it from. But uh, February, the next month, they did a mastectomy of the left breast. They did some testing on my tumor. And my recurrence rate was very, very low. So they opted for no chemo, no radiation. And they put me on an anti hormone therapy for 10 years. So we’ve had years and years Yeah, to my Yeah, okay, good. And so I caught it early, they told me I caught it early on the stage one, the survival rate for stage 01 And two is 90%. For Stage Three, it goes down into the 70% percent talent for stage four, there’s a five year survival rate of 20%. So the moral of the story is, guys who are listening to this, if there’s anything you think is wrong, or abnormal with your chest area, get it checked out. So I’m going to hand it off to who’s ever next.
Ari: So, um, wow, that’s an incredible story. And, you know, what, it takes a lot of courage to step forward, and to talk about it, because you’re right. I mean, I’m gonna be honest with you, the first time I heard about it, I was a little embarrassed I, you know, it’s just one of those things. So I really, I take my hat off to you that you’re, you know, that you’re strong enough. And you’re, you know, you’re you’re positive enough in your own self, that you can come forth. And and tell us about these situations. And because I’m sure there are many, many men out there that, like you said, are very, very embarrassed about it. And they may not take the time to check it out. Because they said I you know, I’m not I don’t have breast cancer, you know, when those macho men. But Brett, let’s go to you. And can you tell us about like the risk factors of male breast cancer? And then tell us a little bit about your story?
Ron: Yeah,so there’s is multiple risk factors that come into play for male breast cancer age being one, a family history, do you have a sister, a mother, a grandmother that has had breast cancer, you can also have first cousins are so in a relation that breast cancer and inheriting gene mutations to the bracha one Abraca, two, I know Abraca twos more closely related to male breast cancer and prostate cancer. And then another one’s the client filter syndrome, where a male has an extra X chromosome, it’s a rare thing as well, but just with male breast cancer, it’s it’s a rare thing. But it’s just there’s there’s so many other different things. I think environmental is another thing, you know, high estrogen numbers or eating estrogen. High level foods like soy is one can have effects on your body and stuff. So it’s really, it’s you have to start knowing your family history. You have to know everything in moderation. Know what you’re eating what you’re putting into your body. Because, you know, I was 17 When I first found a lump. I was going into my senior of high school I had received to fit. Two physicals are seeing the doctor at least twice that year one to get a fiscal to play football and another at the end of the year to receive some vaccination shots to go to college. And I still had the slump. So I brought it up to both doctors and they both had essentially said that it was a calcium buildup you’re going through puberty, it’ll dissipate and go away. It’s nothing to worry about. Fast forward seven years later, it 24 is when I was officially diagnosed. But I was only diagnosed because I had my parents pressuring me to go get a physical, because they had asked if I’d still had the lump. And I said, Well, yeah, it’s, you know, hasn’t gone away. But it hasn’t really bothered me. One of the things that I never really told them too much until close to the actual diagnosis, but I did have a discharge from my nipple for about a year and a half. You know, so, but I was thinking as a male, you know, you try to think of all the different ways as not to go to the doctor. So I was just thinking that it was the calcium buildup, dissipating and going away. So the, you know, the liquid and everything coming out, but come to find after I was diagnosed that, you know, with a lump, and then a discharge, those are two of the top symptoms of male breast cancer, like, you know, after I died, I got diagnosed, I started this deep dark dive of everything, and I, you know, saw this, so I wish that I would have been a little bit more aware of what I was, you know, dealing with forehand, so then I could have been a little more proactive. But I was 24, I was diagnosed, I went through, I did a mastectomy, and then four rounds of chemotherapy. And it was going through this whole journey and talking to all these different doctors and hearing that I would be a lot of the first you know, for secondary surgeries, or first reconstructive surgery, you know, and so on, and just being so young in it, and talking to the doctors and them saying that, hey, if I was willing to share my story, they think that I could help out a lot of other men being more comfortable with it, because most men they hear and they think it’s embarrassing, it’s emasculating. They don’t want to talk about it, because hey, they got diagnosed with breast cancer. Well, I’m a dude, I don’t have boobs, I don’t have breast I have packs, I have chest, I, you know, puff their chest out, and even strong stuff. But it’s, it’s breast tissue is what’s getting effective. And that’s what all these men need to understand is, it’s okay. If that’s the clinical, that’s the, that’s the scientific term. That’s what it is just come to terms with, that’s what it is, is breast cancer. But you’re not alone in this, like, we’re all here. We’re going to help you out. We’re going to get you through this and stuff. So that’s where I first started the Brett Miller when t foundation to start building the awareness, and men and the youth because of so young. But just, you know, men and women in their teens, you know, they need to know their body, you’re your own best advocate. So if you feel alone, say something, go to a doctor, get a second opinion, a third opinion. And then in 2014, myself and Cherie Ambrose created, co founded the male Breast Cancer Coalition, under the direction of my mother, Peggy, she kind of they between those two women, I know that we wouldn’t be here, where we’re at today. They keep us all in line. And with the help of Ron and Pat, and everybody else. I mean, we just you know, we’ve turned global. And I know that I couldn’t keep everybody in check on doing this. So I thank everybody, for all their help and where we’re at today.
Wow, that’s amazing. I have to tell you, I have a 17 year old, my son. And I can’t imagine, you know, if you know, something like that would have happened to him. And I know him all right, he would have been no, no, no, he’s too macho, you know, he doesn’t, you know, he’s not going to the doctor does now. He’s just that type of macho kid, whatever. Sometimes I have to put them in, you know, get them in line. Although as he gets older and older, it’s getting a lot more tougher, you know, to do that. But again, you know, again, like Ron, I say the same thing. My hat’s off to you. You know, it’s just I mean, listening to your whole story, you know, especially, I mean, you’re young.
Yeah, yeah, I tried to give you a little cliff notes version and stuff. You can go see read my story and all of our men story on our website, male breast cancer, coalition.org. And those that we’ve lost, we have all their stories up there just so not every single one’s the same. Everybody’s a little different in their ways and stuff. But we all come back to the Hey, we were diagnosed with breast cancer, and we’re all here for each other.
Ari: Right. I hear.
Now, Pat, you got a little bit of a different story. All right, cuz obviously you’re not a male. I figured that out, by the way, right? Yeah, I figured that out. Yeah, no, no problem. No problem. It’s, it’s all those years of schooling that I had that, you know, that I learned that. And I’m not going to go into anything political. But tell us tell us your story, or your husband’s story, actually. But it’s right. It’s obviously your story as well. So give us an idea what you know, you know, talk about the signs and the symptoms maybe that you you worked with or found and then give us give us you know your story. I’m sure Everybody wants to hear that.
Pat: Well, the first thing that I tell the guys when I’m talking to them is I try to express to him what the signs and the symptoms are. They should be doing self exams once a month, just like women do. And when they do self exams are checking for lumps, they need to just need to include the area around the collarbone, as well as their underarms because that’s where our lymph nodes are. And you guys need to be checking. The lumps can be small, they can be large, it can be hard, it can be soft, it doesn’t matter. My husband did have a lump. However, he also had like homeless, he thought that it was probably just another life Poma, which is a fatty, non cancerous mass. And so he wasn’t worried about it, but never occurred to him. The second thing that I tell my men, and I explained to them what they should be watching for, I tell them when they get out of the shower, is to stand in front of the mirror and look at themselves are both breasts, about, you know, even Is there a rash on one is there a dry patch of skin on one, if they notice something, they need to think back to how long it’s been there, they don’t remember how long it’s been there, they need to see a doctor about it, because that can be cancer coming through. The third thing is the nipples and it surprises me how many of our men actually have this as the the deciding factor for them and how they discovered the breast cancer, it’s a nipple starts to retract. If it starts to to pull inward, that should not be happening. That’s not a normal thing. And if that happens, it means that something is in there probably pulling it inward. The fourth thing is what Brett mentioned with his and having the drainage from the nipple. And it can be a clear drainage, it can be a blade drainage, it can be a milky drainage. Now, those are the four most common things that I tell people. Some people have have other symptoms that have come up. These are the four most common and some people don’t have any kind of symptoms. My husband, the only thing that he noticed was he had a pain in his arm, and then his shoulder. And he was an avid golfer. So we attributed it to being something he did on the golf course. As it turned out, he was diagnosed in December of 16. And at the time he was diagnosed because he didn’t get breast cancer. So at the time he was diagnosed, he was diagnosed metastatic stage four. It had already metastasized from his breast, he had six lesions in his liver. It was in both lungs. It was in his lymph nodes. It was in his bones, which was causing that pain in his arm. And he had eight tumors in his brain. We had no idea anything was wrong. So that was in December of 16. Five months later, in May of 17, he took his last breath. And so what I have done, you can see the car on the wall behind me. That was his car. That was the last one that he ever bought. And I had never heard of the male Breast Cancer Coalition at the time. But I took his car, and I had to wrap it on it. And in blue on the spirit, I’m sorry, in pink on the sides of it. It says breast cancer does not discriminate. And underneath of it in blue, it says men to and on the hood of the car, the picture of my husband, it was taken at Christmas time when he was being diagnosed. And that that was actually not my intention to put his picture on. But it has has been a very good thing for me to have on there when I’m talking to these strange men that they have no idea who I am. I can point out that picture and I can say you know what, five minutes later he was gone. And I traveled the United States talking to people about breast cancer. Since my husband died about four and a half years ago. I put 75,000 miles on my car. I just got back, Brett mentioned his co founder, Jerry Ambrose, and Sherry and I just got back from a 15 state trip to the western half of the United States, talking to people about male breast cancer.
Ari: That is so amazing. I’m going to tell you that I went on, you know, the different websites and I saw I saw the car online. And it was absolutely amazing. It was it was it was incredible. I just want you to tell us one quick story that I read about you having some trouble with the law.
The one in South Carolina. So I was driving down the interstate in South Carolina with my car and traffic was not up to speed. So I went around everybody. And I get to the front and there was a state trooper. And so he still wasn’t up to speed. And so I took off and I was driving the speed limit, maybe a couple miles an hour over. And my telephone rang. And I answered it, and it ended up being the manager from the hotel we had just come from the night before. And I said, you know, I’ve got a trooper on the road behind me, you pull off the interstate, and I’ll talk to you. And so I signaled pull off the interstate. I had passed the trooper probably 15 or 20 miles before this. And I signaled to come off the interstate, and the trooper followed me off. And he, as I turned on my blinker to actually get off of the exit ramp, each up to siren at me. So I pulled into the driveway of a field. And he pulled in behind me. And he came up to the car, he greeted me and the lady that was traveling with me. And then they leaned down right beside me. And he said, I need to know what are the signs of male breast cancer? And I told him before that I just told you, and I asked him, I said, Are you having a concern? And he said, Yes. So I’ve not heard back from him again. I gave him all of the details about the male Breast Cancer Coalition, building that we had a ton of resources, asking to please go in and see a doctor. But the only reason he stopped me was because of the car.
Ari: Right? Exactly. And I love that story. I think it’s a great story. And it’s very powerful. And, you know, it’s just, it’s one of those things that you don’t know who’s got it, you don’t know who’s gonna be affected by it. And like you said, if it wasn’t for that car, he wouldn’t he would never have known and who knows? Who knows. But that’s that’s amazing. Jeff, how are you? Um, you’ve got an interesting story. And it’s, I think it’s something that we share, because it has to do with 911.
Jeff: Yeah, we have not as as close to the towers as you were. But yes, I was down there, the day of, and quite some time after 911. I actually when I saw the first plane go in, I was on the both planes actually, it was on the 37th floor of a Goldman Sachs building. And I called my wife and I said, you know, just a natural reaction. I said, I’m going to go down here and see if I can help. And she implored me not to go. One of the people from Goldman was a fire chief from Lynbrook out here. And he went, and he came back all ash and this is before the towers crumbled. And then he said, Don’t go down. He said, people are jumping, it’s really a bad scene. Anyway, I watched both the planes go in. I did watch the towers, towers crumble as I walked to my office, there was no transportation of phone service at the time. And I supported the global financial community. And I spent months down there trying to normalize their businesses after after the disaster, so and implementing disaster recovery plans and traveling from site to site. So as I tell my story, my company and the Environmental Protection Agency said it was safe to breathe the air down there. So I walked around down there massless and so I also noticed a lump in my chest. And I also had a couple of live homies and I had a light Palmer removed from my back when I was 2324. And it was nothing. So I just assumed that it was either rely Poma or it was a swollen gland, and I ignored it. So it wasn’t until we went down to Sanibel Island on a vacation with some friends and my wife, where I took my shirt off at the beach and my wife said, your nipple is inverting, you’re going to the doctor when we get back. So and I did and I had a needle biopsy and even though the doctor said 99.9% It’s not cancerous. Came back three days later that it was cancerous. And I had a vasectomy. And while while you’re on the table, they check your sentinel lymph nodes. If your Sentinel nodes or garden nodes are cancerous, they take as many as they can reach. So they took 36 lymph nodes out of my chest and my underarm, and 35 of them will cancerous. Oh my. Yeah, so I really thought at that point that it was going to be difficult to survive this. But I was sent to an oncologist and I was put on a regimen of chemotherapy and then seven weeks of radiation therapy in which by the end of that I’m fair skinned, I was fairly well burned up and blistered. But I made it through. And I went back to work. And was I was really looking forward to getting back to work after spending like nine months in the in the house, at any rate, and like return pretty much to normal with the exception of my, my surgery scores. So and I was also put on a regimen of tamoxifen for 10 years. So, in any case, everything was going fine. And I was seeing my oncologist, every quarter, and I went in for a quarterly checkup. And he was pressing in my clavicle or my collarbone and he said, I feel something here. I’d like you to go get a sonogram. The sonogram showed an abnormality. And it turned out it was the same cancer. And it was inoperable because it was close to facial nerves and, and blood vessels. So I had to be put on a regimen of eyebrows branch, and Faslodex, which is a hormone injection, I get two injections in the buttocks every month for the rest of my life, essentially. But
I was diagnosed in in 2014. I just had my ninth anniversary on October 1 of my vasectomy surgery. And, and I’m still standing, I’m still here. So very grateful, because I do know, a number of men that that have not been so fortunate. And my life is it’s about 95% Normal. So really no pain, I just you know, I have some I’m tired sometimes from the from the medication to fatigue. But I did, I signed up with an attorney downtown as there’s a 911 health commission and and a victim’s compensation fund for those that were below Canal Street. On the day of 911. And the subsequent days, if you were there live there or in school there, there were monetary awards, and there were the the the health fund assist you and your medical co pays. Right now my medication is $14,000 a month. That’s, that’s just for the that’s just for the AI branch. And then the the injections are close to 5000. So it’s close to $20,000 a month. And I wound up after 65 in the which by the way, I was 58 and a half when I was diagnosed. And I was told I was young. So Brett, you were very young. In any case, um So just getting back to the to the fund. I signed up with him and I did get a monetary award and I and they they pay my co pays thank God because that would have been life changing for us. And and what what do you they asked me to do the attorney had asked me he said this, the new oppossed wanted to do a story about male breast cancer would you be interested in speaking to that? And I said sure. So they they they did an expose a on me was on the second page, the New York Post and full page and they sent a photographer took some pictures and the day after that every new station Radio Station newspaper, one of the Speak to me so it was very embarrassing in the beginning to be a male with birth with breast cancer. But I did I got over it and and I’ve been I’ve been Hawking the same things that have been discussed here check yourself do the monthly self examinations, even visiting doctors offices, I mean my internist. Same thing when he looked at the lump on my chest 99.9% I mean, I felt very comfortable, like there was nothing wrong. So I’ve tried to get the word out through the years that men have breast too and and to check yourself and be proactive with this if you if you feel anything, get to get to the doctor.
Ari: Right. Right. That’s well we’re we’re glad you’re still with us. And again, thank you again for you know, for stepping out of your comfort zone in order to talk about this because it really really is very important. So lastly, I’d like to bring Ron back to discuss like goals. goals for change, some takeaways and most important contact information, because I know, I know there are guys out there that are suffering with this malady. And either they’re too embarrassed or they don’t know what to do. They don’t know who to call, they know where to go. So all this information is very, very important. So Ron, can you keep? Can you come back to us please?
Ron:I just want to add a few things that that I just thought about. People used to call this an old man’s disease. It’s not an old man’s disease. We have men in the coalition all ages. So if you’ve ever read that male breast cancer is an old man’s disease. It’s not. And I do want to also mention that people in the black and brown community tend to get this disease earlier, and it’s more aggressive. So be aware of that. And I did want to also mention before I go into goals for change, and takeaways, I too was embarrassed in the beginning, Ari, I had an incident where I went into a dental office, I had to have some work done before my surgery. I told on my head, I was having breast breast cancer surgery, I was too embarrassed to say, I didn’t say breast cancer. I said cancer surgery. I was too embarrassed to say breast cancer. So anyway, I walked in, and this and the girl sat me down. She said, I understand you’re having cancer surgery tomorrow, what kind of cancer surgery I said breast cancer. And she started laughing. Now I don’t know if she was, you know, she thought it was making a joke or whatever. I don’t know if it was malicious or not. But a bell, a bulb went off in my head. And I said, You know what, if I get through this, men shouldn’t have to put up with this, I’m going to advocate for the male Breast Cancer Coalition. So that’s how I got into it. But as far as goals for change, what we’d like to see is a reduction in the sexual stereotyping of this disease as a female disease. We’d like to see a degeneration of the language across all mediums to acknowledge that the disease does exist in men. And we’d like to see more funds spent for research on male breast cancer. We know the researchers tell us that there are differences between male and female breast cancer. And right now we’re basically being treated with you know, mostly the same protocols as women, especially the the Tamoxifen regimen, when you’re all done, same thing that women are doing. And we’d like to see a screening protocol for men with a hereditary predisposition to breast cancer such as a family history of breast, ovarian, or prostate cancer. And again, the main takeaways know your family history regarding cancer and all the signs and symptoms of male breast cancer. Check your breast monthly for any abnormalities. And guys, be your own best advocate. If the slightest concern arises, see your health care provider, if needed, get a second or third opinion. If you’re not satisfied about your concerns being addressed. Very important. It’s nothing to play around with you. You just heard some of our guys and what you know what it’s like it’s not it’s not fun having male breast cancer, you want to get it taken care of if you have it right away. That’s the key.
Ari: Wow. And again, most important contact information.
Ron: Yes, yes, absolutely. Our Our website is male breast cancer coalition.org. Our Twitter is at MVCC underscore MH BT our Facebook page is male Breast Cancer Coalition, LinkedIn, male Breast Cancer Coalition. If you have any questions about male breast cancer, we you can email us at male breast cancer firstname.lastname@example.org And we are on Instagram at male Breast Cancer Coalition.
Ari: Wow. You know, again, my hat’s off to all of you for coming and you know, sharing your stories. I know as all of you have mentioned at some one point in time or another you were embarrassed by it, but came to realize that this is a deadly disease and that you know, you shouldn’t be embarrassed by it. And you need to step up and if you’re a male and you know you should check yourself out, just to make sure that you’re okay and if you’re not okay, please, please please go see a doctor. I’m going to be honest, my daughter is an OB GYN and she is a huge advocate for you know, going to the doctors and seeing doctors you know she’s seen a lot, you know, on on the on the women’s side. So it is so so important to be proactive. Make sure you Do what you need to do in order to protect yourself. And again, thank you guys so much for appearing on the show. And I just hope that we’re gonna get this the word out there good luck to all of you with, with everything with you know the the coalition and with taking care of yourselves and your families. And thank you so much for appearing on the show. You’re listening to whispers in bricks and I’m your host Gary Shomer. Until next time, listen to the whispers avoid the bricks and never ever give up on your dreams. Bye for now.