Updated: Jun 22, 2021
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.