Updated: Jan 28
Tammey takes a deep dive into the misunderstood, and in some cases, dismissed world of male breast cancer with
advocates Bret Miller, and Cheri Ambrose.
In 2003, Bret was a typical 17-year old guy. A senior in high school, on the football team, working at the pool and ice rink, when he noticed a lump in his breast. Without medical insurance at the time, he mentioned it to his doctor at a sports physical, but the doctor was unconcerned. Seven years later, in 2010, Bret asked a doctor again, this time his doctor sent him for a sonogram and Bret found out he had breast cancer.
In 2009 Cheri had a close male friend who was battling breast cancer. When she learned that her good friend was embarrassed and horrified to have what he called a "woman's disease," she made it her personal mission to raise male breast cancer awareness nationwide. In 2013 Cheri and Bret founded the Male Breast Cancer Coalition.
These fearless advocates give us an intimate look at everything from the individual breast cancer experience from the diagnosed male’s perspective to state and national legislation regarding gender equity in a predominantly female-driven, and focused, field of medicine and treatment.
Listen in as they share the wisdom and experience of both advocate and patient, we discuss harmful stereotypes, personal fears, and medical misinformation as it pertains to male breast cancer. Where positive and lasting change has been made for not only the men diagnosed but also in preemptive knowledge for self-diagnostics, and as they share their passion for service as they passionately continue their advocacy work.
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Hello and welcome back to Your Killer Life, we are so excited to have you back listening to the podcast this week, and we have a unique and, I think, a topic that just could use all of the help and assistance with awareness that we can give it. And I have been, I guess you could say, blessed in my life to know three breast cancer survivors who are men. However, I had no idea that there were so many. I suppose that should have been a little bit of a take away for me.
So today, we have with us from the Male Breast Cancer Coalition, we have Bret Miller, and we have Cheri Ambrose. And we’re going to talk about the amazing work, the amazing advocacy work, and awareness work that they do. We’re going to hear Bret’s story, which is absolutely amazing. And frankly, I think so important for all of us to know, because we all have men in our lives, whether it’s our brother, our sons, our husbands, our... we all have... our fathers. We all have men in our lives. So let’s kick it off with some introductions.
Bret, do you want to kind of tell us a little bit about you?
Yeah. My name is Bret Miller. I am the co-founder of the Male Breast Cancer Coalition. Before that, I founded the Bret Miller One T Foundation. We can talk about that later, but I am a ten-year breast cancer survivor now; my official ten years was actually the twenty-first just a couple of days ago. And my last treatment, I was 17 when I first found a lump, and I was twenty-four when I was officially diagnosed. So.
Wow. I am looking forward to digging into this story because it is so important and Cheri. Tell us a little bit about you.
Cheri Ambrose, Bret forgot to say that we are a split; we are split across the country. Bret is out in Kansas City. I’m located in New Jersey, so we do all of our advocacy work online through Zoom, through social media. And before meeting Bret, I actually had started a breast cancer organization here in New Jersey called the Blue Wave because we wanted to be a splash of blue in that sea of pink.
And we started because I had a good friend of mine actually pick up the phone one day and call me before they even called their family and told me that her husband had breast cancer. And she said, I know you do a lot of the Komen runs and advocacy work with them and that, you know, a few men. She saysI’d really like you to talk, to Brian. So I did. And then I said, you know what?
This is so much bigger. The more I was finding more of these men just here in New Jersey; I decided to take to the Internet like everybody does. And I wasn’t finding anything. So I kept trying and trying, and I kept coming up with a young man’s story. And this young man was is now my co-founder. But I found his story, and I’m like, I’m going to get in touch with him. So I reach out. No answer.
Reach out again. No answer.
I was like this guy, like little shits like a celebrity or something. I don’t know. I can’t get them. I finally got his mom, who is our director, Peggy Miller, on the phone, and the two of us talked for an hour. And by the end of that conversation, we had decided that the two organizations were going to blend, and we were going to become the Male Breast Cancer Coalition because this thing was way bigger than Kansas City and New Jersey. That’s how we all started.
I love that. And so I think this the stats that I looked at last, it was like, is it one in eight hundred men are...
1 in 833. That’s here in the United States. Estimated numbers this year are 2,670 men are estimated to be diagnosed with the disease, with 520 dying from the disease. And that number I have tracked it for the past 11 years has steadily gone up.
OK, so I’m going to make a note because I want to I want to dig into Bret’s story, but I also want to come back to that because I know in the research I was doing often for men, it’s diagnosed later. And that contributes oftentimes to that outcome.
Exactly. And that’s part of our biggest thing is catching it early, you know, doing your best. And don’t be afraid if you find something, go to the doctor, quit being a stubborn male. I mean, like I said, 17 when I first found a lump, twenty-four when I was diagnosed. Get to the doctor because it’s ultimately going to save your life, is going to the doctor and figuring out what the lump is.
So at 17 then and it was at a sports physical. So did you discover the lump, or was that the provider at the physical?
No, I discovered it. So it was pretty much just like I don’t know what day of the week it was, but I was watching TV, and I kind of had that stretch, backstretch and I kind of scratched, and I came across my right chest, then the nipple and I felt a lump there, and it was a little bit before a week or so before the sports physical for football. And so that’s when I brought it up to the first doctor, and he said, oh, it’s probably just calcium buildup. You’re going through puberty. It’ll dissipate and go away.
Had it all through senior year of high school, had to go get my shots for college, and brought it up to that doctor, different doctor and almost verbatim said the same exact thing, calcium buildup, dissipate, puberty, all that stuff. So I’m thinking, OK, nothing big. You got to think this is 17-year-old18-year-old2003-2004. I don’t think any doctor at that time is going to think a 17-year-old, 18-year-old male is having breast cancer, so I don’t fault any doctors at all.
Some people have been like, well, would you go back and sue for misdiagnosis? Absolutely not. They’re learning just as much as we are. And it’s, you know, it’s medicine. It’s called a practice for a reason because it’s changing every single day, every hour. So I don’t fault any doctors. I thank them for everything that they do. But it wasn’t; it was the reason why it was so long was 1) because I’m a male, I’m stubborn. I’m not so much anymore. Still a little bit. But I didn’t go to the doctor. I never felt like gravely sick, minus the common cold, a few things here and there, but I never felt sick. So I never went to the doctor for it. I went through all throughout college without health insurance because once again, that’s another issue of discussion, long discussion with that. But so I didn’t have health insurance through college. Graduated took the job at the country club where I’m still at and had health insurance for almost two years, but once again, I didn’t feel sick, I didn’t need the reason to go to the doctor, to both my parents were like, you’ve had health insurance for so long, and you’re paying for it, but you’re not going to the doctor to go set up and get that physical. Go, go do that.
And my mom, my parents knew about the lump, but they had, they had asked if it was still there. I was like, yeah. And the one thing I didn’t really tell them and or tell anybody really was that for almost two years, I’d had a discharge from the nipple.
If I were to bump into something, or if I were to squeeze it. Now, hear me out. Don’t give me that judgment right now. I thought that it was the calcium dissipating and finally going away. So that’s an amount. I’m just like, OK, that’s what it is. But my mom hearing that afterward, she immediately was like, that’s not normal. Having any type of discharge and then reading symptoms and stuff after I was officially diagnosed like lump, discharge and it’s like, oh, OK, well, maybe I should have acted on this a little bit sooner. So, yeah, I went to, finally went to the doctor for a physical.
I had to actually stop the doctor and ask him to come back into the room afterward because they don’t do breast exams on men in their physical. It’s just statistically, from what I was told, it’s not worth their time. That’s almost verbatim what I was told from this doctor after I was diagnosed after he sent me to go get the sonograms. But you know, I asked him to come back in, and I pointed out the lump and immediately kind of looked at, and he goes, huh, let’s get you scheduled for a sonogram.
It’s just down the road. You can go do it in the next couple of days and go from there. So I got scheduled for a sonogram. I walked into the building, not knowing where I was going. Women’s Clinic is the title on the room. I walk in, and I’m a few minutes late because I walked into the wrong place first, and they greeted me by name, which I am sure does not happen to any women when they walk into the women’s clinic.
But I guess since I was the only male going in for the day, they knew exactly who was coming in. Filled out all the information, name, address, health insurance. When was your menstrual cycle? Are you pregnant? You know, quite literally is like that much information I could fill out of an entire page, walk back to pink gown, pink everywhere, pink this, whatever and being like held in a room waiting for multiple women like walk through the imaging and then being allowed to go to the room that I needed to be in.
I got the sonogram. The doctor that’s on-call there, she comes in after the nurse, the technician does, you know, does the imaging and almost does like a triple take me the monitor back and forth and just looks at me and she goes, you know what, let’s let’s do a mammogram just to make sure we cover all bases. The imaging is there. We don’t have to waste any more time not to come back in on another day. If your doctor says this and everything. And I’m like, is that physically possible?
It is. It doesn’t feel great. Women, I understand. I get it. Fully get it. It’s not fun, but it ultimately ended up being the better imaging between the sonogram and the mammogram. So I get then set up with the surgeon afterward after the imaging come back, and he looks at it, and he’s like, based on what you’re telling me and what I see here and stuff, yeah, it’s probably just a calcium lump, but the amount of time that you’ve had it, we’re just going to take it out anyways. Just be on the safe side.
He goes I’ll put the surgery through the insurance claim; they’re more than likely going to deny it straight up on the first time because they’re going to see male chest surgery. Why are we paying for this? So I’ll have to put it back through. So we will schedule for this day, but more likely, it’s going to be two weeks out. And like clockwork, exactly like it was, it was two weeks afterwards because it got denied the first time.
So it was literally a day procedure in and out. And I was back at work the next day, and it wasn’t it was leaving work at the country club to go work that to go park in downtown is when I got the call from the doctor, which I at the time didn’t even I didn’t think that they were actually sending it off to pathology. Or, they might have said something to me, and I was drugged up, so I don’t remember. That’s what I’m going to go with.
But he called, and he was like, “Yes, this is...” I don’t remember his name. I didn’t care to remember his name because he was such a poor doctor, the way his attitude was and his bedside manner and everything about it. So that’s why I don’t remember his name, but he just. “Yeah, this is doctor, just letting you know that the preliminary pathology reports come back. It’s breast cancer. I haven’t fully read the reports, but I’ll call you back in three to five days once I do, and we can set something up.”
And it was literally like that. And he goes, “Do you have any questions?” I was like, “Uhhhhhhhh... noooo?” Like, you know, didn’t ask like “Hey, you should come in, I’ve got to we’ve got to discuss some things. Or are you in a safe space? Or are you driving, or are you not?” You know, whatever. So in that standpoint, I didn’t, that’s why immediately I was like, well, we need to find somebody else. But we finally got in to see the doctor pretty much next day because I call my dad and let him know.
And I was like, “Hey, I’m heading downtown. It’s going to be busy. I can’t talk very, very much. But this is what’s happening. He says it’s breast cancer. Don’t tell mom because she’s going to freak out. And I don’t have the time to deal with what I know she’s going to start doing. But I will tell her everything once I get home.” And I get, I mean we hung up the phone, and five minutes later my mom’s calling.
I was like, “way to hold out on that one and stuff.” But he was just like because I couldn’t. I literally hung up the phone with you, and I turned around. She saw it on my face. So but it’s a good thing that she did because Mama Mama Miller just sick on him. I mean, like I said, three to five days with the doctor told me we were meeting that doctor the next day we were in his office discussing everything.
And he’s telling me that it’s a double mastectomy. No way around it. He’s done the surgery for many women, but it’s never on any men; he’s never performed the surgery on men before. And just his manner, like, I signed all forms, all HIPPA forms so that any information could also be discussed by parents. Well, he almost refused discussing anything with my mom. And his response was he’s a twenty-four-year-old male. He can deal with it.
Exactly. I can see the look on your face and stuff; it’s like that’s a lot of information, one to be diagnosed with cancer at any age, any person, any sex or whatever, but a male and hearing the words you have breast cancer like that right there just stops in their tracks, and you’ll hear from many men being like that’s not possible. Men don’t have breasts. You know, but we have breast tissue, and that’s what we’ve got to get the men to understand that it’s not “pec” cancer. It’s not just cancer. It’s breast cancer. That’s what the term is. We need you to come to terms with it and just understand it because then that’s only going to help us get better.
Because when you start correcting somebody and say that’s just cancer or pec cancer, it doesn’t really help us out. It’s not going to help us get that research and that information that we need out there, that awareness out there, that men get it too. Men have breasts too.
I was just going to say. Exactly. And so you found a different doctor.
Yes. So I was immediately hearing that I would be the first male that he performed the surgery on. And then there was no way around a double mastectomy. I was like, I want a second opinion because of my case and how young I was and how rare it is. The hospital was like, “Can we share your case? No name or any personal information like that, just your age, sex, and then what the diagnosis is?” And I was like, “Absolutely.”
That ended up being like the best thing because it was there were so many doctors kind of looking at it. And yeah. So Dr. Lon McCroskey, is it ended up who we got to—met with him. And he was the same way, though. He was like, “It will be the double mastectomy.” He goes, “I understand you got a lot of stuff going on with work. So the focus right now is going to be on the right side. We can schedule in a couple of months or so for the left side to come back and do a left side or at a time frame that works to make sure that we’re good and we come back and do the left side.” But you know, there’s just so much better with so more comforting. And it made everything it was like. And he had performed the surgery on 12 other men.
So I was like, right there. He knows what he’s doing, does great work. But it was it wasn’t until meeting him that I felt comfortable with the diagnosis and talking to him. And he was saying, “Well, you know, I can reach out to some of the men before and, you know, maybe get so you can ask the questions if you have any questions.”
Because my mom has reached out to two other corp... or Foundations and said that she knew the director personally because she’d done work with them, help them with city work or something else, and said that my son is diagnosed with breast cancer. Is there anything you can do? Both organizations told us sorry; we are only women, we only focus on women. Let everybody else piece those two together. But it wasn’t until the American Cancer Society is the one that’s helped us, that has been with us from the get-go. So I’ll do anything for them. But it’s my doctor that said, if you’re willing to share your story if you’re willing to speak out, he told me that he could see me be a face of male breast cancer. He sees me being somebody out there that’s going to help other men not take time off work, do the surgery, do whatever treatments, and act like nothing happened but to be out there and be a voice for and talking to him and just thinking about it.
I was that’s... you know... OK. This is what we’re doing because I also met with a plastic surgeon as well and asked him about the possibility of reconstruction or anything.
And, you know, his words were it would be the first that I’ve done. I’m sure it can happen. I just don’t know. And it’s just like hearing these, like; I don’t really feel like being a guinea pig. So I was just like not doing anything. I’ll keep up keeping the scar. That’s the story. That’s what I can lift up my shirt and show people a scar when for women it’s like, no, I’m not going to do it, which I totally understand, I get it.
But, you know, at the time, that “I heart boobies” bracelet was a big thing. So I was wearing it. I was walking out of the bar. Somebody walked up and goes, you would? And I go, you’re right, I would. I do like boobies because I wanted to save them. I want to make sure, like, that’s the whole purpose for it, not because I heart boobies. And it was just I just got this like, look. And then I lifted up my shirt, and it’s pretty much like she paid for the drink and, like, ran away.
I was like, I’m not trying to embarrass somebody. I’m just saying, yeah, I, I went through it. So yes, I do want to save the boobies for men and women.
And then so I had the mastectomy—the morning of the surgery. I’m sorry for jumping around a little bit. Just the other things just king of pop in, my mind is like working a thousand miles a minute. The morning of the surgery, my doctor got a call from his friends at John Hopkins, and they said, do not treat men like women, only do a single mastectomy because of the time it was a double mastectomy for women so that it wouldn’t spread to the other breast. And based on the barely stage one diagnosis, he was like; we’re only doing a single.
He was like, no, you can think about it. We can schedule and do a double one, do the other side later stuff. But I got more information. And it’s like now just the one side. It would have evened me up a little bit; I guess, if I did. But yeah, whatever. So I had the mastectomy. We had two or three of the news stations there to one or two of them were actually set up in the surgery room.
The doctor and my surgeon prepared my mom for never told me this. I didn’t know about it until a day, or two later said that based on the time that it had the lump, that to prepare for the worst, that it could be everywhere.
Luckily it wasn’t. It was the sentinel node test, the biopsy tests, and stuff; it was only in the... pretty much where it was at. Right behind the nipple.
Everybody has always asked, were you scared when you got the news that it was breast cancer before the surgery? And I said it was for a minute. For a little bit, yes. But immediately, it was just kind of like, well, the lumps gone like what’s what more is there? You know, I wasn’t thinking at the time the possibility of the spread.
But I had four rounds of chemotherapy. And because I did the Oncotype DX test, which is great if anybody is in those early stages of breast cancer, it’s a I know it’s stage one and maybe stage two now that they can test up to or that is it gives the doctors, the oncologist, a better plan of attack. So, yes, no OncotypeDX. I took the test, and it said that I don’t know how it all works. It’s science, but it said I had a 22% percent chance of cancer coming back over a ten year period, but if I was able if I chose to do chemotherapy, four rounds of chemotherapy, then it would reduce the possibility by up to 10 percent. It’s like whatever I can do to get that number down to zero. Let’s do it. So, yeah. So I opted for the four rounds of chemotherapy, and then, of course, then other questions come in on a afraid to get sick or lose your hair or all those questions. And I was like, well, I’ve already lost the nipple. What’s hair? It’ll grow back then. It won’t. Four rounds chemotherapy.
Everything happened from April 27-28. 27th was the lumpectomy, and the 28th was the official diagnosis to September 21st. And that whole timeframe was surgeries and chemotherapy and everything. And I think I missed maybe like eight or nine days of work. So the doctor said youth was on my side because I know other men that through, through the years of discussing them with, we’ve been on almost the same chemo. They may have been on a few more rounds or so, but they took them down more than me and stuff. So, age definitely adds a factor to it. But not every case is exactly the same diagnosis. You know, everybody’s different, and I just got lucky. That’s all I can tell everybody is I just got extremely lucky.
I think it’s always amazing to me as I talk with cancer survivors, how many of us were healthy and had, you know, did not feel sick? I mean, I was 43, so I was a bit older than you were, but probably the fittest I’d been since my 20s and didn’t feel sick at all. And if I hadn’t had, if I had not seen changes and even my changes were subtle, and my cancer was lobular, and my changes were that one breast was slightly firmer and smaller than the other and my nipple had retracted.
And the gynecologist actually, in doing the exam, said to me, “Well, are you sure your nipple hasn’t always been retracted?” Just so you know, we get dumb questions too. Pretty sure, had them for 43 years.
But there was no palpable mass with the lobular. So even though I had over six centimeters of tumor tissue, there was nothing palpable. So and no leakage from the nipple either. So that’s always interesting to me. Just that how healthy and then how different the symptoms are for everybody. And as a, as a guy going back to the start of your story, I wouldn’t expect a guy to know what to do with discharge from a nipple-like we’re... we’re sort of coached from, you know, junior high or middle school or whatever it’s called these days. Right? From health class, that these are the things that you watch for, and guys don’t get that conversation. And so I wouldn’t expect you to know.
So where was your cancer ductal, lobular combination? And do you know, did you have any gene mutation?
It was ductal, ductal carcinoma in situ with the official diagnosis was, like I said, barely stage one. I think they based on it was just on that borderline on the centimeter. So they put it in stage one assisted zero. I didn’t know gene mutation, you know, nothing that they at the time because it was only BRCA1 and BRCA2 that it was that they could test for at the time.
Insurance would not cover any more. After that, they would only cover one genetic test. So when the Myriad came out with myRisk, my oncologist like, well, Peggy, my mom, you know, you’ve never been tested for the gene, so we can test you. And if anything pops up on yours, then we can test Bret. You know, and then insurance will cover it in that way. She got tested, nothing there, but they did have a few outliers that they weren’t sure, but it kind of dinged on the radar and something to kind of put in their catalog.
And if it’s something, that they determine something, that they can reach back out. But there’s no genetic mutation. There are thirteen females on my mom’s side, all cousins. So kind of second, third, and so on so distant, there’s no direct line of the family history. But back to what you were saying about how women are coached from it, from the get go and what to look for. That’s what we found that men aren’t. And we know that it’s one percent of breast cancer cases.
We know that it’s a lower number of women, but it’s still possible, and it’s not always going to be a hereditary thing. So it’s you know, it’s just along with testicular cancer, making sure that you go to the doctor for your for colon cancer or prostate or anything else later in life, whether it’s the earlier is what you’ve got to kind of get it embedded in their brains is a breast self-exam. It’s doing a quick once over.
Our slogan was the original one from the Bret Miller 1T Foundation is “Guys, don’t be afraid to touch yourself.” That’s, and that’s exactly what it is. So it was it for me; it was that quick. “Oh wow, OK, so there’s that.” And it’s I’ve got a friend here. She was with me on the Ford Warriors in Pink back in 2012 and 2013 that her lump was all the way up in her collarbone. And a lot of people don’t think, don’t realize that your breast tissue is going all the way up to your collarbone.
So it’s understanding. And that’s what why we did these breast exam videos; we have all these cards all over a website, malebreastcancercoalition.org. And I don’t know what, Cheri, 18-20 languages now or something. We’ve got them translated in, quite a few.
We’ve got them translated. They’re actually a two-sided card. One side, it’s blue, and it’s a figure of a man and step by step, what to do. And the other side is women. And we’ve been lucky enough to have a lot of our... being we’re a global organization. We have a lot of our partners around the world who have helped us with the translation into different languages.
So it’s just getting the men out there, just getting the awareness out there for the men to do an exam, occasionally. Run your hands over. If you feel something, do then do it deeper. Maybe the three fingers and the soft, medium, light pressure test and all that. So...
That... that is fantastic that you have those resources available. And talking about early detection, I mean, we know that with women, right. Its early detection does not cause more cancer. But we know that when we started to focus on early detection, we found more cancer. And so right now saying that male breast cancer is at one percent, I mean, that’s based on today and the limited amount of effort towards an education, effort towards education. Right.
So it is possible that there’s more.
But I think it’s more of a reporting them as well. Like my doctor said, the 12 other men, he perform surgery on 12 other men, but they don’t talk about it. That was their information and actually reported to the studies, to the actual numbers. Nobody knows right now. So it’s just it’s one of those things is getting men more comfortable and speaking about it and outspoken so that we can get stronger numbers so that we can get more research for it and be included in more things.
I’m thankful for the FDA for finally making that change, that if you’re going to do a breast cancer study, you have to include men. And if you don’t, you have to have a really good excuse. So thank you for the FDA for starting to include that.
So, yeah, and I will tell you, it’s also interesting that they tested your mom for Broca, but they didn’t test your dad. And I find that interesting. And actually, maybe I’ll toss this over to you because you’ve probably done some research on that. You know, in talking with Chris Gallo in one of the previous podcast episodes and him being a gene mutation, having the gene mutation and that not being present on his mom’s side, and he has daughters.
And so, you know, that’s sort of that next question, I guess, for me anyway. Is that why are we still only looking at women when it’s clear men do have breasts too, and they have breast tissue, and they can also be these bracket carriers?
Yeah, absolutely. We actually have one of the gentlemen here who’s been with us since the beginning. His breast cancer came down on his father’s side. He inherited the BRCA mutation from his dad, who inherited it from his dad. And lucky for him, I want to say that.
But luckily, he was diagnosed, and he knew he had the gene, and he had his daughter, which was actually too young at the time. And they didn’t want to do the mammogram on her. But the doctor pushed it, and the two of them wound up having their surgeries together, going through chemo together. And now she is he went he had a double mastectomy. She actually is a four-time survivor. She’s battled four times now, and she’s got, young kids.
So he came to a meeting of a living beyond breast cancer, meeting with me one night, and the room was all women. There were about a dozen of us there, young women, older women. And they were all telling their stories. He told his last. And then they looked to me, and I said, well, I’m only here for support. I said I’m not a survivor. I said, however, I said I noticed something in the conversation that we just had that maybe you didn’t pick up on.
I said, but I noticed when each of you was asked, where did you get your BRCA mutation from? You all said your father. And they kind of just looked at me like dudes in headlights, and I was like, that is amazing to me that that that stuck with me. So it’s definitely something that they need to check on both sides.
Yeah, definitely. Wow. So that is interesting. So and Sherri, on your side, so you because you’re not a survivor, you have this, but you have this great empathy and passion for advocacy work and education. And so can you talk with us a little bit about that side of the male breast cancer coalition and the work that you do there?
I do everything but work the website. I’m the one who searches out for the men. I set up Google Alerts. So whenever there’s a story that happens to pop in the news, no matter where it is around the world, I will go after them. I’ll go to the reporters. I’ll dig until I find these guys just to let them know we are here because the stories are so familiar. I don’t know of any other men. I felt like a freak.
I’m the only one out here I want to make a difference. And I’m like, you’re going to make a difference. But there’s such a big voice for it just lends to your story. And that’s how the male breast cancer coalition was built. We actually are storytellers. And it’s true telling each one of these survivor stories that we’ve been able to connect with so many people that we are actually having men find us now rather than us chasing them. And what we found is that the numbers and the ages are actually anywhere between late 30s to 50.
It’s not an old man’s disease. We are saying 60s and 70s. That’s not the case because we have so many that are in their 30s and 40s.
So we do our best, we reach out to clinicians, researchers, scientists around the world, and we connect them with researchers here in the United States that are doing the same type of work. And in hopes of them collaborating and finding a cure for this or finding some type of treatment that’s going to give a better quality of life to our metastatic survivors.
We want to have them around for a long time. We don’t want breast cancer to be a death sentence for anybody. But unfortunately, so many men missed the signs.
Yes, that’s it’s to hopefully get to that treatment the way they go. We know this works for men. Here you go, not the. Well, it worked for women over here, and we’re hoping that it works for you, too.
So we’re going to give this shot not like it having but guarantee that this is going to work or this is going to be better because it’s directed for you and your home or hormones being a male, not this may work.
This works for women. So we’re hoping to work for you. Good luck. That’s what it feels like, is that we’re and get it. Like I said, there are a lot more women that are diagnosed with.
That’s where the research is. Right. But men need to be included too.
Right. You still need that research. I think that I know, as I mentioned earlier, even with my lobular, like for the longest time, they would gold standard for Lobular was to treat it like ducktail. And now they’re understanding that ductal and lobular are very different, and perhaps they need to be treated differently, or it occurs differently—place of recurrence. So, you know, when I was first diagnosed, I was like, OK, well, cool.
It’s the slow-growing one. And everybody was telling me this was great news. And following that, five years is great. Ten years is awesome. Fifteen years your home free only to find out that with Lobular, actually, it’s kind of the opposite. So having the gold standard and the science-based evidence-based solutions and best possible treatments for men is critically important. The understanding we yes, we all have all of the hormones. And from an endocrine perspective.
Yes, right. You’ve got testosterone and estrogen and progesterone just like I do. It’s just different amounts. But understanding that and I didn’t even ask you that if your cancer was estrogen or progesterone positive, estrogen, estrogen positive. And I think that surprises a lot of people, too, because they don’t understand that. That’s also something with guys that to be aware of that are too negative.
We’ve got her too positive or positive or negative. We’ve got a whole everybody’s different. Every single one of them is different. I could not when I look at the information that we have because we do keep a registry. Every time we have somebody, we find out what their stage was a diagnosis. And if they progress, I just keep putting the information in there because we want to be a resource. We reach out to the clinicians and the scientists because we want you to use us.
You need these guys; you need their information. We have it for you. We want to make a difference.
And you’re a connector. It sounds also like that’s a big part of it is not just connecting the guys with each other and with scientists and research, but also connecting scientists and researchers together to make sure that that’s an element of it. And that’s huge. I’m looking at my notes. And you were saying your members of the Metastatic Breast Cancer Alliance, the Advanced Advanced Breast Cancer Global Alliance, ASIO, and ASIO, but you also do conferences and panels and review boards.
And so you do a lot of groundwork.
Yes. On that, we make sure that the men are actually involved in a lot of the initiatives with metastatic breast cancer. Well, Breast Cancer Awareness Month coming now, October. We’re inundated with requests for men to do interviews. And I said I wish the people would understand that breast cancer is twenty-four seven and it’s the entire year because some of these guys really need a breather after this month is over, believe me. But metastatic breast cancer is a huge push right now with all organizations.
It’s like they all jumped on the bandwagon, and gratefully that they have. So we are getting called into a lot of interviews. So it’s a busy month for us. Coming up, I need a vacation at the end of it.
I won’t speak for Brit or any other cancer survivor, but. I am pre-tired for October just because the awareness, the information, and I’ll definitely be talking about Pinkwashing and also making sure that you’re donating or purchasing or making a difference with your purchase because I think that’s the other thing that happens every October is we’re understanding where your dollars are going if you’re really, truly wanting to make a difference and with that purchase and not just wear an item that is pink or pink and blue.
So now, did you guys come up with pink and blue men have breast tissue?
Well, the men have breast tissue. Yes. And the pink and blue. And but the way I chose it, the pink, the way that the ribbon is the pink in the front and the blue in the back because it has always been pink. It is a female dominant disease, but men can get it too. So women for you think women first, but now you can think men second. And then it’s not only being diagnosed but then there’s going to be larger support system as well for women.
So we’re they’re kind of backing them. So that’s kind of that’s why I chose the pink in the front—blue in the back. I know. I’ve seen it flipped for other men have done it, blue in the front, everything so we can get the name out to get the image out there and stuff. I get both ribbons have different meanings. I know it also means like premature babies and other things. So there’s so many different meanings.
But yeah. So that’s where the blue in a sea of pink.
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So as you guys look ahead and what are some changes that you would want to see, I mean, for me, I got to tell you, it’s not it’s humans. We have breast tissue. So breast cancer is a human issue. And I know talking now with you and then with Chris before, and friends of mine like that whole process of once you’re diagnosed to going to the women’s clinic in the breast center and the forms and the whole bit is it’s got to be a bit of a mental hurdle.
I mean, I can only imagine if it was reversed in every place that I went. I was having to answer questions that were absolutely not relevant and the requirements to fill out at least sign the form every time, even though you can’t really feel anything out on it. So is that also part of your advocacy work in bringing that awareness and working with clinics and also finding allies like Dr. Crysopoulo, who is absolutely amazing and aware of the plastic surgical needs of men who have been diagnosed and been through the process.
So that’s a lot of questions in one question. But maybe I’ll start with you, Cheri, on the advocacy side and then toss that over to Bret on the list of providers or sharing provider information
On the advocacy side. Definitely, we are the voice for the men. Like you said before, we get involved in everything we Bret has actually, and a couple of our other men have said on the Department of Defense has their review board for any type of treatments or protocol or drugs that they’re looking to bring forward. And that’s an intense amount of information that they have to give. But it’s important to have the male perspective. We’ve been welcomed, and the women actually appreciate the fact that we’re there.
And when we have researchers or doctors at these conferences that stand up there and say, well, women this and women that, I’m always the one in the back of the room going. And man, I think they get tired of me after a while. But I think they respect the fact that we want to see change. And I’ve noticed them changing their wording a little bit to say people with breast cancer or men and women with breast cancer.
So it’s catching on. And I think the more we’re out there, the more they see us all. It’s just going to make sense that it has to be because. You know, these guys need the research as well. Absolutely.
Can you repeat the question?
I sure can.
The question is that they know I buried a whole bunch in there like I had it.
But then that’s what happens. Pressure’s on. I totally get it. As far as, like, finding providers or creating lists of providers that are sort of like the known go tos. I know, like with not putting on a shirt, they have a provider directory when it comes to a static flat closure for women who are seeking to work with providers who are experienced and have provided good outcomes for other survivors. And I was wondering if that was also something that you did at the Male Breast Cancer Coalition.
Absolutely. I mean, sure can really touch on a little bit more. But we’re there for men to share their story and talk to somebody else and get some extra guidance if they need it. I know Dr. Ben Park is probably our go-to guy for everything. He’s the head at Vanderbilt Research, and just the knowledge that he has, like, I sit there and I just kind of go, I don’t know if I understood that, but I, I thank you for everything that you just said. It is just the way his brain works and just his knowledge of what he’s done and what he’s done for us and all the men. Yes. I mean, we do have we have that connection so that we can make sure that if a male doesn’t feel like he’s getting the best treatment, we can try to find and help them out the through our branches and just make sure that they get the get the awareness or the help that they need. And one of the biggest ones is with the HDAMidwest.We got them to change the forms. They have a specific form for a male to ask the questions so that I didn’t have to answer the questions that have one for women and that we have a gender-neutral one, that they can do both. So it was it’s helped us out—the perfect partner with the breast exam card.
That is fantastic, and I know out on the website you mentioned that you have those cards available, I’m sure, for download then.
Free downloads as well. I’m modeling from the big model for the breast self-exam, the actual like how to we just updated it again, which you don’t lose much of a chance to just be touching myself again up here, up here from the gutter. But we have that video there in case somebody just really doesn’t understand, though, where you need to go. So..
you know, and that’s goodness, that’s more than fair. I will tell you, even from the women’s side. Right. Like dense breast tissue versus not like it’s all different and what you’re feeling for and the better approach for it. And you know, and honestly, like, I did not see the doctor for the longest time because I did not feel a lump. And so even on our side, education being so important. And if it hadn’t been for Dr. Google and I sitting down one night and me saying, oh, this is a thing. And the other thing I always tell people is you’re the resident expert, right? Like you’ve lived in your body since birth. And so you kind of have a feel for whether or not something is right for you. And it might be OK. But whether or not it’s right, if it’s a change and I’m so thankful, I listened because stage three B had I continue to ignore it. Right?
Like you’re your own best advocate, your body best if you feel is so good, it feels up to say something. See all the stuff you’re hearing your best advocate. If you feel something, go to the doctor. And if that doctor just tells you something that you feel that something you’ve got another doctor. Do not stop until you are comfortable with the answer.
You know my friend that that had the had the lump up near the collarbone. It was the third doctor that she went to and they he, he or she the doctor almost brushed her off again. If she goes, I am not leaving until you figure out what this is.
That is when she goes; I know that something is wrong, so don’t take no for an answer.
That is probably some of the best advice that anyone could ever give with any medical situation. And, you know, and it’s not like you said, it’s not that doctors are bad doctors. That’s not it at all. It’s just that they see so many different things. And unless you really exercise your voice, I mean, truly, the gynecologist was about to send me home, and I said, no, this nipple has been retracted. This has changed. It’s subtle to you. I’m not OK with it. And three days later, I had a mammogram and an ultrasound and same kind of thing where they’re like, we’re just going to take a few more images and maybe, I mean, just right in your head, you’re like…
We don’t want to take any more time. You know, it’s not a big deal. We’re just going to come back here. No, it’s like now that you play it over my head, it’s like, OK, yeah, she totally knew.
But she wasn’t my doctor, so she couldn’t she can tell you say it was.
I get it. I understand. But no, it’s just it’s, it’s, it’s also getting doctors to broaden their horizons because, Cheri you were there. ASCO. We went to ASCO, 2017 or 2018?
2017. I think you can ask. Yeah. Yeah.
Amazing. Like so many people there, up in Chicago. The McCormick Place is absolutely ridiculous. Like I got lost in at least ten times. But we had doctors from all over the world, and I don’t remember, he was from the middle of Europe or something, I don’t remember exactly where it was. The doctor I’m standing there, Michael Singer standing there, Cheri is there. We have our shirts on, our video videos playing for the breast self-exams, and everything. And we’re literally right at the front entrance.
This doctor walks up, and he just kind of (imitates laughing), “that’s kind of funny. What any of those men don’t get breast cancer.” We’re like; we’re right here. I’m literally right here. I had it like I think Michael might have looked over shirts that are pointed at the video. You’re like; you’re absolutely insane. But it’s just it’s. Getting doctors to know that it’s possible to know there was an oncologist…
We’re educating doctors. We’re educating educators. We’re actually educating some of the drug companies because I know we had a battle with the ignorance drug.
We had several of our men being turned away because they were postmenopausal women when the drug came through for them. And we actually had to go and speak to the people that we work with at Pfizer and say, look, you guys really got to help us make this change. This is being given to our men. It’s a lifesaving drug. And without it, what do they what are their choices? And they actually did push that through and changed it.
And it’s, and we had a male, and there’s male in South Carolina that was you know, she was on Medicaid and diagnosed with breast cancer and was denied any treatment at the time because everything in Medicaid said women or females, nothing about men. So they were like, we don't have to pay. And luckily, the governor stepped in and changed it and did and stuff. But that’s the thing. It’s because their insurance companies will sometimes find a way to get out of having to pay for it because it’s states, female or menopausal, women or whatever.
We’re not doing it. We have to fight it. We’ve because of Sherry and my mom and others that we have with us, that’s the only that they’ve helped change. Yeah, it’s because of them.
Go after them. We will do that for them. We’re a support system. We are a 501C3. We’d love to fundraise more, but what we found is that we really needed to be a support system and a connector because we are global. And I always say my husband laughs at me, but I said I have so many men, so little time because I would just love to meet every single one of them. But it’s Internet-based is we’ve been very lucky to at least be able to connect with them.
But we are the ones who will go advocate with their drug companies. Will, we’ll go up against anybody. I don’t have a problem with that right now. I’m taking on somebody else because their commercials are all women. Get in the writing. It clearly says for men and women. I said, do you know the difference you would make in somebody’s life? Man, I can repeat that commercial word by word because it’s on so often. Do you know the difference you would make in that man’s life that’s sitting on the couch that maybe felt a lump and didn’t think anything?
And he sees a man on that commercial next to that lady with metastatic breast cancer, and they just kind of like, well, you know, commercials are very expensive. I said, yes, I know that. And you just made a new one. And it’s women, too. So that’s the kind of thing I mean, in a nice way we do. We actually have to push keep pushing the envelope. And that’s the only way that we’ve been able to get where we are in the past six years is just speak up.
That is amazing. I mean, that’s not that much time. Six years. That’s in the world of things like 2020.
Feels like it’s been six years, but six years at the fast forward man.
You know, that’s a lot of advocacy success in a very short period of time. And that’s I’ve got goosebumps. That’s significant. And I guess one of the questions I would have is for the listeners who are listening, what are some of the ways that they could support you in your efforts or support a cause? In other words, you know, download the resources to take to the clinics they’re going to to help educate people or connect. So how can folks help you guys, help them make it better for everyone?
Our website is where all of our information is the malebreastcancercoalition.org, and everything’s on there. All of our links to all of our stories or a number. And for those that we lost or we have a donation page on there, that if you are willing to help because you don’t have call my mom. We don’t have a lot of money, but we have a lot of heart, and we’re here for everybody. We will do everything that we can.
I hope to get to a point someday that we could help fund somebody in treatment or two for that that gas money to get to treatment or just whatever. I hope that we can get to that someday. But right now, we just aren’t. I mean, we’re doing everything we can out of our own pockets to keep everything going. But any donations help. It helps get us get our shirts. Our “men have breast too” shirts. We give it because it wants a male gets diagnosed.
We we we send them a package. We give them; we give them a shirt, we get them a hat. We get them the wristbands, the pens, and everything. We get something to them, so they don’t. Alone, because most of them are getting diagnosed and there’s no other man around them, so it gives them some pride in it and makes them comfortable, and they wear the shirts, and then the subway stops, and they ask them, what does that shirt mean?
And then they tell them men can get breast cancer, too. I’m living proof of it. So it’s just it helps us keep the server going. The websites go on and just a whole bunch of other stuff. I mean, sure, they to others. But the website is our biggest thing. And then, you know, Twitter handles that.
We have Instagram, Twitter,
Instagram, LinkedIn, Facebook, where we’re everywhere.
Social media is a godsend. We would not be where we’re at today without social media.
It’s so true. I have a love-hate relationship with it. Not going to lie.
How do I know that? Because it’s listening to us right now.
Like, I’m going to go on my phone and everything, say
Probably, that it’s so much work. It seems like making things pretty to go out there, so. And what about volunteers? You guys also look for any volunteers?
Most of our volunteers, like when we have an event and where we call it when we’re tabling somewhere when we have a tent set up at an event in prior years, actually, the people that are in the area are survivors in the area and their spouses, they come out. We don’t really get anybody that’s that doesn’t belong to the organization that really volunteers to help, which is fine. We don’t, you know, we want the men there.
It’s nice if, you know, I’m standing there with my t-shirt and everything and can speak about it. But we really need the guys there to show the face, the face of male breast cancer. And to your question to Brett, before, when you were saying, you know, what is something that people can take away and do? To be honest with you, if they hear this podcast, they just educate their if it’s a woman who has breast cancer, make sure you check your sons, not just your daughters.
Make sure you get that genetic testing, know your family health history. That is so important that that’s that’s my biggest takeaway is let the men in your life know that breast cancer is real and it’s a people’s disease, just like lung cancer.
Oh, my goodness, this is, so I’m almost speechless. It’s just so big, and I even having friends, like I mentioned before, that are men who have been diagnosed with cancer; I really, of course, had not thought through that experience from a man’s side, not just from walking through the doors of a clinic, but even to the drug availability and procedures and providers and the whole bit and just being taken seriously and providers are huge.
Brent, I’m so glad you brought up to keep asking questions. I know when I spoke with Chris, Chris had an amazing provider who was just like on his phone immediately. And that’s not the case for everybody, men or women, unfortunately. So you really do have to advocate for yourself. This is huge.
That’s what our medical advisory board is. It’s actually made up of top docs, oncologists, scientists, researchers from all around the world. They don’t pay to be part of it. We bring them on if we feel that they can help somebody else just with the understanding that we will never ask them for anything. But if one of our guys needs their guidance and needs to get in touch with them, that they can reach out, and they will get an answer.
And we’ve actually had mentioned Dr. Ben Park. He used to be at Hopkins. He’s now at Vanderbilt. And he I cannot tell you how many times he has gotten on a conference call with someone’s oncologist and spoke about their treatment plan and possibly made a difference in their survival.
Absolutely important. So as we wrap up, I’m going to ask you each for your sort of your nugget or your takeaway for our listeners, I know you kind of said it.
It’s OK to repeat it. It’s OK if it’s something different. But, Sherry, what would your takeaway be for any of our listeners that are listening today?
It bears repeating, know your family history, you are your best advocate and know your body. Like Tammy said and Brad said, you live in it every day. Don’t be afraid to speak up and don’t take no for an answer.
And how about you, Brett?
What would be that that nugget that you would want for multiple? Because this is you guys are in uncharted territory. You’re making new pathways. So what would you want our listeners to know
I said it once before it those a slogan for the other one foundation started. Don’t be afraid to touch yourself. Don’t be so stubborn. I know it takes a lot for men to actually want to go to the doctor. You know, your arm falling off, hanging on by a thread or whatever may be the doctor. But you know your you know, your body, your best advocate. If you will go to the doctor, see something, feel something, say something.
If they tell you something, don’t take that as just a no. I got lucky that it was a slow-growing cancer for seven years. But not a lot of men are. We are and then are going to be diagnosed at later stages because they don’t think that it’s possible and they don’t think that it’s anything or they brush it off. So it’s finding it early and finding it quickly and getting the treatment that you can quickly so that it doesn’t get to metastatic.
And one thing I didn’t know until talking with the two of you is that the third week in October is Male Breast Cancer Awareness Week. Is that correct? Yes.
We’ve been I’ve been going to the governors in all of the states for going on nearly seven years. And we’ve been lucky enough to get three states that market permanently where we don’t have to chase after them every year. That is Massachusetts, New Jersey and Pennsylvania and the rest. We’ve got forty five states in total that give us proclamation’s every year. I’m down a few this year, unfortunately, because some of the government agencies aren’t issuing them due to covid, but we still get their support and it means a lot to the guys.
I’ll actually write for it in their name and they receive it in the mail or they go and pick it up from the state house. And it just it makes a big difference in their lives.
It’s huge. It’s it’s that recognition that, yes, this is this warrant, this level of attention for everybody and especially all those living, living.
Hopefully we can get it from all the states and national you know, federal week, October is Breast Cancer Awareness Month. So hopefully we can get just a little bit in there, not only for men, but like our our friends for metastatic as well. Because most of it’s more straightforward. It’s more.
Yeah, definitely. Definitely. And I think that’s a beautiful thing. And I just want to say this.
We’ve heard your baby in the background, Brett, and sorry, you know what I love about this, and I say this so often on the podcast, is that when you see us as survivors, right? Like when you when I first got that diagnosis, I am I will admit I immediately thought death. Right. Like, you just it’s the C word. It hits you like a Mack truck and you’re thinking, OK, well, I just start my slow walk to, I guess, the other side.
Right? But the reality of it is that it I call it the cancer secret, not so secret club. All of these people who are alive in their diagnosis.
And that’s exactly what you are alive in your diagnosis advocating making a difference for people who also have been diagnosed. And you’ve got your 14 month old baby, 14 months.
Yeah, yeah. Baby girl.
Love it. So live it. Well, good. So keep you healthy on their toes for sure.
I love it. Well, thank you both so much. And before we close out, I do want to make sure that we do point out and I will of course, include this in the show, notes her and on my social media stuff and email newsletter. But it’s malebreastcancercoalition.org. And then you guys are also Twitter, Instagram, Facebook and what are your handles and all of those places?
I am on Twitter and horrible at it, I’m getting a little bit better, but checkthembret because that’s the Volunteer Foundation. The website is checkthem.Org. And then and then you chime in on the other two.
Twitter is @MBCC_MHBT and that’s Male Breast Cancer Coalition. And then Men Have Breast Too is what that stands for. Facebook is male breast cancer coalition and LinkedIn is either under I think under my name and male breast cancer coalition.
Well, I’m going to go out and buy myself a T-shirt and then you will soon you will get your information, will send you a care package that you’re going to help us out.
So I am going to help you guys out. Actually, if you send a care package, what I’ll do with that is I will do I will do my own little awareness for a giveaway for the care package for a male breast cancer survivor. So all my social stuff. Yeah. So absolutely. We’ll do that. Let’s raise some awareness. And especially in that third week of October, I am looking forward to forwarding your stuff, tagging you guys and things and helping you guys get the message out.
And I thank you for bottom of my heart for all that you do and that you guys. My gosh. I mean, it’s like when the story is coming from the depths of your soul, right? Like that’s where it’s coming from and that’s where it started. And what a powerhouse. And Cheri for you to step up and step in and say, no, we can do bigger and better and stronger and make this better for the world. And you guys are change makers.
And I know the male breast cancer coalition would not be where it is today without Sherri and my mom, Peggy Miller.
That’s what I’m going to give a shout out to Peggy. Thank you, Peggy.
All right, you guys, thank you so much for being on. And for our listeners, please make sure to like and subscribe and leave us a note below and definitely reach out to the folks over Brett and Sheri and the team over at the Male Breast Cancer Coalition. If you know a guy who has a story to tell, please make sure and connect them, because those stories and having relatable stories is just paramount when it comes to walking this.
What can feel like such a lonely journey? You really don’t have to walk it alone. There are people who have been there and will be there for you with you through the marathon, not just the sprint and not just at the starting gate. So, like, subscribe and of course, tune in next time.
And until then, keep building your killer life.
Remember the conversations you hear on the show are based on unique experiences and varying diagnosis. And we all had our own medical teams. We are not giving medical advice. So if you hear something inspiring, please talk with your providers.
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