The Guy With Stage Four Breast Cancer: Jake Messier on Fighting a Disease No One Thinks Men Can Get

Former Marine and marketing executive Jake Messier was 52 years old when he discovered a lump and waited months before getting checked — because, like most men, it never crossed his mind that breast cancer was something he needed to worry about. Now a stage four patient and one of the most visible advocates for male breast cancer awareness, Jake opens up about the isolation, stigma, and systemic blind spots that make this diagnosis uniquely devastating for men. From being turned away from support groups to becoming the first male patient featured in a Susan G. Komen national campaign, his story is a master class in turning personal crisis into a movement. 

Transcript

SPEAKER_00 0:00

Welcome back to the Progress Report. Today's conversation is one that challenges assumptions, breaks down barriers, and quite honestly, might change the way you think about health, awareness, and advocacy. When most people hear the words breast cancer, they picture women. But the reality is it doesn't discriminate. And for men, that misunderstanding can be dangerous. Our guest today is Jake Messier, known to many as the guy with stage four breast cancer. He's a former Marine, a seasoned marketing executive, media personality, and now one of the most visible and impactful voices in the fight to raise awareness around male breast cancer. Jake, welcome to the Progress Report. Take us back to the moment when you were first diagnosed. What was swing through your mind as a man hearing the words breast cancer?

SPEAKER_01 0:48

I think it's I think it's a similar cancer story that I think a lot of people hear, right? When you when you hear the word cancer, right? Let's just take breast cancer out of the equation for a minute, right? When you hear you've got cancer, right? And I was 52 when I was diagnosed, right? Which is still very young, certainly from the male breast cancer side of things, it's still very young. So I started off with you've got cancer, right? And that's a big shock. And and you know, it was funny because I went into, I mean, let's go back a little bit further, a few weeks for earlier, because uh part of the story is that it was March of 23. And if you know anything about my story, I didn't get diagnosed till September of 23. So March of 23 is when I'm putting on some deodorant and I'm like, hmm, there's a lump there, that's weird. And I literally said out loud, that's weird, and I went on with my day because what else am I supposed to do? Right, because I'm a guy and I'm like, okay, that's a weird thing. So literally a month goes by or something like that. And I'm like, well, that lump didn't go down, but it also didn't get any bigger. So all right, I'm just gonna go on with my day. So it keeps on going and going and going. We're visiting my best friends, my wife's best friend happens to be married to my best friend. We were all stationed together in Tokyo 25 years ago, so we're all very, very, very good friends. And um, you can edit this however you want to for your show. But he was walking by and he gave me a titty twister, right? Just a just a and it dropped me literally. I buckled my knees buckled and I dropped to the ground. And I was like, that's like, I mean, yeah, those things don't feel good, sure, but it's not like it's not gonna like it. Like, I I couldn't even catch my breath. And I was like, okay, this is weird. So I then went, but I didn't like connect like here and here, right? I wasn't at that point yet. I'm like, okay, well, something's going on here and something's going on here, but it wasn't the same thing. So I I went to my primary care physician in August of 23, and he listed off about 10 things that it could be, and none of them were breast cancer. Um, and and he said, but let's get you to a mammogram anyway, just to be sure. And thank goodness that we we did. And you know, mammograms are are tough for for men with, you know, or you know what, for anyone with breast tissue that that with a small amount of breast tissue, right? Because, you know, I think that's an important part here is that mammograms are literally for everyone because everyone that is a human being has breast tissue, and therefore you're susceptible to breast cancer. That's the overarching thing of male, female, transgender, doesn't matter who you are, you've got breast tissue, you're susceptible to breast cancer. So I went to go get a mammogram, and I'm sitting there with a nurse, the radiologist hadn't come in yet, and the nurse is sitting there, and the nurse can't tell me that I have breast cancer, right? Because you know, it's not within her power to tell me that. But she's also seen literally a million of these things. She's been sitting there when people have gotten it and people have not. So, I mean, now I'm an expert. I'm two and a half years into this thing. I, you know, I can read scan, but like that was my first time ever looking at a scan, and I'm like, I don't even really know what I'm looking at here. I said, I asked her, I said, you know, does this look bad? And she said, I can't tell you that. But what I can tell you is that your life is going to start moving incredibly fast and incredibly slow all at the exact same time. And I can tell you nothing has come closer to the truth of my first two years than that. It has gone by like it happened yesterday, and it has dragged on like it's been 30 years. So, you know, those things were were were pretty significant. Then the doctor comes in and he says, you know, we have to do a biopsy, but you know, I can pretty much confirm that you've got breast cancer. And that sets off a whole bunch of emotions, and it is not unique to me. In fact, it's the it's one of the reasons that male breast cancer is 30, 30 more fatal than breast cancer, you know, female breast cancer. 30. And it's because men are diagnosed later because we're, you know, doing this and we're going, oh, that's weird, and we go on with our day, right? And then there's the once you get diagnosed, there's significant mental health stuff that happened. You're all of a sudden thrust into this women's disease, right? That for 70 years, since breast cancer has had the biggest and best marketing campaign with the pink ribbon and all those things. It's literally one of the biggest marketing campaigns in the history of mankind, you know, right up there with Coca-Cola and Ford, it's the pink ribbon. But you get thrust into this pink world and they start handing you brochures with you know, smiling white women on it, and pink and flowers and and all these things. And there's this everything in it is her and she and woman and all these things. And I'm like, wait a minute, I don't like fit into any of this. Like, what is happening? So then you start, you know, just looking online, and there's three male breast cancer organizations out there, three, you know, and there's about 2,000 breast cancer orgs that primarily focus on women, but there are three that are dedicated to women. So you find these small communities, and but there's this emasculation that happens. There is this mental health hurdle that happens that you have this women's disease. And, you know, I tell people, like when I went in for my mastectomy, I mean, the nurses were trying to be kind to me. So I'm I let them off the hook because I tell this story and I and I don't want them people to be like, oh man, they're jerks. But the nurses in the OR, they didn't put a surgical bind on me to keep sort of everything in in place after my mastectomy, because the only ones in the OR had pink and flowers on them. And I and I wake up and I'm like, put the medical device on me. I don't care what it looks like, but that's the pervasiveness of the lack of understanding. I mean, I just I just did a post yesterday on my TikTok that my wife went in for her mammogram last week, and the nurse working the front desk at the mammogram center, because my wife was like relaying that she's pretty hypersensitive to her mammograms because her husband has stage four cancer. And the nurse was like, wait, I didn't know guys could get cancer. Like guys could get breast cancer. Like, this is this is a woman working at the mammogram center. Like, this is not uncommon. I've had probably half a dozen times that RNs or MDs, people with that next to their names, have didn't know that guys could get breast cancer. So it's sort of pervasive. And when you're thrust into that, you know, it's a very hard place to be. And a lot of guys don't come out of that, don't come out of that emotion, that emotional turmoil that happens when you get diagnosed with this. It's almost the same thing, you know, women get diagnosed with colorectal disease, right? That's 95% men, 5% women. Breast cancer is 99% men, or sorry, 99% women, and 1% men. It's only 2,800 cases a year in the US, where you know, one in eight women are gonna experience breast cancer, one in 728 men are gonna experience breast cancer. So it's you know, when you start, when you when you enter this world, you have to decide on whether you want to be in it or not. And and that, and that's a mental hurdle that I think a lot of guys never get over. In fact, you know, I'll you know, I'll sort of sum up here in a second, but like there's a lot of anecdotal evidence, and I'll get into why it's anecdotal. Um, there's a lot of anecdotal evidence that men who are diagnosed actually don't ever start treatment. There are some guys, or they, you know, they drop out of treatment because they can't handle that being in that feminine, you know, just being in that pink bubble, right? And look, I I get it that if you can't go to treatment because you can't stand the color pink, that that's a level of toxic masculinity that you know that that we shouldn't have. But at the same time, like me as the as the global spokesperson of male breast cancer, I'll work on the toxic masculinity with the guys that are over here, right? That's 3,000 years of evolution. I'll work on that. How about you paint your waiting room yellow or green or some other color? Because that's a way easier solution to make people feel included than actually just you know sticking to the pink mantra out there. So, you know, there's a lot that goes into the psychology and the mental health stigma of male breast cancer that I just don't think a lot of people understand.

SPEAKER_02 9:04

And Jake, two two follow-up questions to that. Number one, um, you know, you say it's one in 700 men. How do we know that that number is not higher and it's just totally undiagnosed men that just never even got checked?

SPEAKER_01 9:17

And that's part of the question here, right? That could be much higher, right? Yeah, um, or it could be much lower, it could be like one in 300 men. We just don't know how many guys are going undiagnosed or passing away from other things or whatever, that breast cancer could have been part of the factors. We just don't know. I mean, the male breast cancer global alliance, um, they sort of keep the stats on this. But at the end of the day, the the point that I made earlier, where we just don't know, and it's anecdotal, in the 70 years of breast cancer research, you know, 20 billion dollars has been spent in breast cancer research. Guess how many dollars have been spent on the differences between male and female breast cancer? I'll give you a hint. You could hold up your hand and put zero, and that would be the right number. Wow. So not why dime has been spent on is this even the same disease? Like, and I get treated at Dana Farber, which is which has, as far as we know, the only male breast cancer department in the world of any cancer center. They have a clinical, I mean, there's those other cancer centers that have a clinical side, or they'll maybe have a few guys that work in male breast cancer, but Dana Farber has a clinical and a research department for male breast cancer. And my oncologist just happens to be the head of that guy, Pablo Leone. And Pablo will tell me all the time, Jake, I don't know anything about male breast cancer. Like that's different than what I talk about with any of my other female patients. So I get treated, I get the same drugs that all the female breast cancer patients get because they literally, and those are estrogen-blocking drugs, which messes with all kinds of hormonal things in my system. But they literally just don't know if that's the best way to treat me or not. So they're just like, well, we we think it works, so let's keep on going. That's sort of where we're at.

SPEAKER_02 11:05

And Jake, that kind of leads me to my next question that I was going to ask, which is basically why do you think that the breast cancer awareness community, obviously, this is the you know, the cat's out of the bag that men can get this? I mean, I would have thought I would have thought day one, the first case, they would have said, okay, we need to start, you know, gearing this towards everyone. I mean, it you know, as a baseball player, I know on Mother's Day it's always, you know, the pink bats and pink socks. And, you know, and the fact that it's on Mother's Day, it's very much geared towards women. I would think that there would be some type of evolution of the uh, you know, the cause, so to speak, to say, okay, we need to start making this all inclusive for all human beings because it's it's something that all human beings can get. Why do you think they've, you know, they haven't caught up with that yet?

SPEAKER_01 11:49

I'm gonna start off by saying over the past two years, and I'm not gonna say it's just because of me, but it's because of me and if I've inspired somebody that start talking about this, because there's a bunch of guys that have been too embarrassed to put this on their social. I had a guy reach out to me last week that was like, I had breast cancer 12 years ago. I'm in remission. Four people knew I had breast cancer. My wife, my two kids, and my mom. Everybody else just knew I was sick or I had cancer because I was too embarrassed to ever say the word breast cancer. So he just put breast cancer survivor on his Facebook profile, and he said he felt brave enough because, you know, I've been doing this. So great. So the tide is changing. I will tell you for those three male breast cancer organizations that are out there that have been around for 10 or 15 years, they've been beating their heads against the wall to get the organizations, the big breast cancer organizations like Susan G. Comen, like the National Breast Cancer Foundation, like the Breast Cancer Research Foundation, the big, big dogs, and they have been pushed back for a long time. Wow. But I will tell you that in the past two years, Coleman and NBCF and some of the other big dogs on the on the on the block are now opening themselves up to not just male breast cancer, but you know, here's where we go with discrimination in breast cancer is really real. It's a real thing. If you don't fit the model of an older slash elderly Caucasian middle, middle sort of wealth individual that every breast cancer organization plasters all over their website. If you're a male or if you're a black female, or if you're an Asian female, or you know, the transgender community gets lost in all of this, right? You know, male to female, female to male, they get lost in all of this. You don't have a really good feeling about the breast cancer community, right? You know, and then, you know, I go to breast cancer conferences, there's 800 women there and me, right? And and and I'm going to one in Philadelphia in a couple of weeks. There's going to be 400 women and me. And you know, I'm walking in the Komen three-day walk in August, and it's going to be, you know, 2,000 women and me. And so there's always this feeling like you're, you know, you're being scrutinized, and and and and but I've been told to my face by multiple women that men have too much voice in this world. And look, I'm one of the people that probably agrees with that, right? Men have too much voice in this world, and you're not taking mine away from me. And I'm like, what do you? I'm just trying to get mine heard. Like, I'm not trying to take away your voice. So you know, like I tried to join a in-person breast cancer support group about a month ago that that was local to me, right? I get, you know, there are a ton of Zoom ones that I can join, but I wanted to find literally some people that I could go sit in a room with and just sort of commiserate as breast cancer patients, right? There was a breast cancer group and a metastatic breast cancer group, which, you know, just so you know, the metastatic breast cancer people like like me, we are never invited to the regular brecer groups because we are their worst nightmares. If you're stage one through three, you're on the curable track. And if you're metastatic, you represent their worst nightmares. So most of the time, metastatic breast cancer patients are not invited to the regular breast cancer group because we and then you know, I I asked this organization if I could join, and they and they told me no, because it would, you know, it would ruin this safe space that women had. And I'm like, but it's not a women's disease. And yeah, they offered me to go to the prostate cancer group. And I'm like, there's nothing to I mean, yes, I have cancer, but like that's where it ends. Like prostate cancer is literally an all-male disease. They don't have this feeling of isolation, they don't have these feelings of of you know, it's an all-male any guy going there, you know, belongs there.

SPEAKER_02 15:39

And so it kind of spits in the face of the whole, you know, inclusive thing that you know, I I there's there's been so many strides. Um, you know, again, I'm a baseball guy. For me, there's a there's a lot of girls out there that want to play baseball. They don't want to play softball, and it's a different game. It's you know, it's very, very similar. But I've always said, you know, why can't they allow girls to play softball or to play baseball? And they they've started to make that movement. And I would think that, you know, they would see in return there there's there's men that deal with this, and this is this is we're talking about life or death here. This is not just um you want to you want to join a group to uh I agree to play Pinochle with them or something like that. This is this is serious stuff that I think you know it's not the time for there to be two two wrongs making a right here. I think that you know you've you've I get it that they want to have their voice and they want to be able to have their time to share, but like you said, it's it's no longer just a female game. We've learned now that it's men.

SPEAKER_01 16:37

Do you do you think that we have a woman with us, and so I'd love to hear her perspective on what that looks like. You know, it you know, I I that women need safe spaces. I do. I get places to talk about intimacy because breast cancer affects that, right? With women, and and I get all of those things, but I experience all the exact same things that you were experiencing, right? I, you know, I lift up my shirt and show my mastectomy scar, and women at a breast cancer conference are like, hey, you know, they're just lifting up their shirts all day long. And I'm like, it's a very different environment, right?

SPEAKER_00 17:10

It's fascinating to me. It's fascinating to me that you're dealing with a with a with a disease that is for men so rare. And and you know, you you've you've hit on a lot of a lot of points I wanted to ask you about, right? You feel isolated, you feel confused. And and I mean I think more than your typical diagnosis, and and in large part because you are a man in a woman's world, if you will. But you would think that at some point that they would say, I mean, I mean I I'm thinking of like grad school where we'd have the class, but then the class breaks off into little subgroups, right? And the subgroups work on different things. So, like, why not have something like that where you you come together as a community of of breast cancer survivors at the table and everybody has a different experience, a different um story to share, and and you talk about that stuff. But then when you when you need that additional support and and and you know, you want the sanctity of of the people in the room that you're speaking to, you do like breakouts, right? Like that. But you're not you're not saying, oh, hey, Jake, you're a man.

SPEAKER_02 18:28

Yeah, you don't get anything.

SPEAKER_00 18:31

So so my my question to you is, you know, very clearly you very intentionally made the decision to go public with your journey when you started dealing with this, and I I assume a large part of it is is because of what we're talking about, right? There's there's not a lot of resources for men with breast cancer. So what was your turning point when you when you said, look, I'm I'm gonna go public with all with all of this and share my story? What would what was your your turn turning point to get there?

SPEAKER_01 19:04

Right. So as I said, you know, those first six months, I was not in the emotional, mental place to be able to do that, right? I was not there. I was just dealing with, you know, you you sort of hit the nail on the head earlier. You're you're already dealing with a cancer diagnosis, right? Which is which is it it turns your whole world in. I've been like I said, I've been doing this for two and a half years now, and now things don't phase me like they did two and a half years ago, right? But you're you know, you're you're on this journey, and I have been, because my background is as a marketing executive, right? I have worked in nonprofit marketing for my entire career for 30 years. I spent 10 years in the Marine Corps as a public affairs guy doing print journalism, broadcast journalism, community relations, media affairs, all those kinds of things. I then transitioned into the Boston nonprofit ecosystem where I worked in all of those things. So my my heart and my professional heart has always been with helping other people. I've always worked with nonprofits. I've always worked as a CEO or a CMO or you know, at a high level with those organizations. So I've already done this. And then for seven years, I owned New England's largest marketing agency for nonprofits, right? So social media, PR, communications, graphic design, all that stuff, right? And for since 2008, I've used Facebook as my daily diary. Literally, there's a post on there every day. And so what I when I started just documenting what was happening at chemo, right? I was like, oh, I guess people want to know what. So it was really just my friends and family, because my friends, my my Facebook is just largely just whoever is, I have to know you to be friends with you. So I just started like, okay, I'm going to chemo today and just sort of doing what a lot of people on on social do, they document their journey. But as I started to do this, I was like, well, maybe I'll throw one over here on my public Instagram and see how that people respond to that. And a bunch of people flocked over there. And I was like, well, I've been doing this for a very long time, and I know media and I know social media. So I was like, well, let me take all of these skills that I've, you know, made over the past, you know, I have a whole IMDB page. I've been a producer and a director of photography on feature films and reality shows. So like I know how to use this really effectively, right? Yeah, yeah. So I took all the skills that I had. You know, if I was a chemist, this would have been much harder, right? If I was an airline pilot, this would have been much harder. But I know how to publicize things. It's what I, it's what I do. And so I was like, well, I'm gonna turn all of these things onto this guy with stage four breast cancer brand, right? And I was like, well, as a marketing guy, I've always said, like, say exactly what you do. And so I was like, well, you know, at the guy with stage four breast cancer, right? And and even if I, you know, in my my thought process at the time, which is now starting to Bear fruit, you know, again, this is a long, slow, you know, I've got almost 50,000 followers now, but like having worked with celebrities and influencers for most of my adult life, like I understand that$50,000, 50,000 followers does not make an influencer. I get that. But 50,000 followers in the male breast cancer community or even the cancer community is a huge number, right? Absolutely. When you're talking about this. So I was just like, well, let's start putting this out and seeing what happens. And that's what I found was about 94%, as my audience started to grow, about 94% of my audience, because again, I'm a marketing guy, so I dive into the analytics every other day. 94% of my audience are women age 45 to 64. That's my core audience. And most of them work in breast cancer, are breast cancer, you know, they they are connected to breast cancer in that way. That's majority of my audience. There are occasionally men who reach out to me, but that's really far and few between. But as I've grown, I my ability to answer DMs and to answer comments as many that are coming in every day are restricted. But I will always make the time for a guy that calls me. You know, if he's like, hey, I found a lump and I'm really scared. And the first thing I say to him, hey, odds are on your side that this is not what it is, right? It's a 99% to 1%. The odds are in your favor. And literally, I think I've had 10 guys, maybe 10, maybe 12 guys, and since I've been doing this, reach out to me. And, you know, all of them have come back negative, right? Now I've had a lot of breast cancer, male breast cancer patients, and we have a lot of conversations about what it's like. But, you know, what I realized is that there was a void, right? And and you know, if you're gonna start a business, and none of this is a business, I don't make any money off of any of this, right? But like when you're gonna start a business, finding a hole or a or a void is the important part. And when I started looking around, I'm like, there is nobody talking about this. Like there is no, I mean, yes, the male breast cancer orgs, and I don't want to diminish what they were doing, but they were only talking to their members, right? They weren't talking to the breast cancer at large, right? They weren't talking to cancer at large, they weren't talking to people, general population, right? Just they weren't talking to anybody, and so I was like, all right, so my audience then I can then I start segmenting my audiences because I'm a marketing guy, right? And I'm like, okay, my audience should really be breast cancer first, right? And I'm not gonna be the, you know, yes, I'm the guy with stage four breast cancer, but that's not my mission, is to sit up there and make sure that you know I'm gonna sit at the table as a breast cancer patient, and just the fact that I'm sitting at the table is gonna tell you my gender, right? I don't have to be there and be special or a unicorn. I'm just gonna sit there with the other 10 breast cancer patients, and the fact that I'm sitting there, and that's that's what's starting to come to fruition. Like that's where Komen, you're like Coleman again, being the big dog in the on the Coleman last October, being breast cancer awareness month, yeah, had eight global influencers that they chose to put out there as part of their breast cancer campaign, right? And usually Coleman does, you know, seven white women and then one diversity, right? That's usually what Coleman ends up doing, right? And this time they chose me, and it's the first time that they've chosen a male patient that they put out in front of their community. And since then, I've done the Komen their podcast, which goes out to you know tens of thousands of people. Yeah, yeah. They just featured me on their three-day blog the other day. Um I'm actually asking, being asked to join a steering committee, which is again one of the first times a male, they've had lots of male doctors on their committees, but no male patients. So I think, you know, and not just with Comen, the National Breast Cancer Foundation, they asked me to review, because I again I was in the military, they asked me to review their entire military veterans program because it was all about women, and they're like, we are totally missing the mark. So people are starting to pay attention. And I don't know if it's because I post every day and I'm and I'm raising the alarm bells or whatever it is. I I'm a firm believer that if you just talk about something every day, you can change the world. And so, you know, I I don't know if it's me or if it's just the movement or if it's just the time is right, whatever it is. I don't care. I'm not doing it for me or my social media clout or my followers. I'm literally doing this for the for the 10,000 guys behind me that haven't died of this yet, yeah, that don't have the voice or don't don't have the ability to say this or have been marginalized during their entire journey. Yeah, I'll put you on my back, guys. Let's go. Let's let's make a difference, you know. And it's not for me, you know. I'm doing this. I mean, there's there's a reality here that I have stage four breast cancer, and the and the reality is is that the average lifespan of a stage four breast cancer patient is 18 to 24 months. That that's a reality. Now, there are some people that go 17 years, but you guys are smart and you do math. If there are people outliers going 17 years, there are outliers going three months. And so, like 18 to 24 months, you know, I'm past that already with you know in my journey. So every day is a gift. And every day, and a lot of people say every day is a gift, but I think you know, when you have when you are living in a condensed timeline, that's what I am, right? I determine that I am going to be as effective in doing this as I can, because what I want is not for breast cancer to embrace us. That that would be a happy accident of this. What I really want is for the guy that's gonna go through this in three years, that's gonna be like, holy shit, like I'm so scared, I don't know what to do. And that person finds this social, and even if I'm gone, this social is gonna live on forever. And there are there is so much content on there. There's there's seven, seven-part series on you know, how to avoid anxiety, your upcoming scan, and you have all this scanxiety for it, you know, this that there's what to you know, how to deal with chemo, how to deal with the pink bubble. And so those guys can feel empowered three to five years from now. You know, there's that adage that wise men plant seeds that they're never gonna sit in the shade of, and that's what I'm doing. I am literally paving the way so that in a couple years, somebody that's way better at this than I am is gonna go out there and kill it and make it that much bigger. And so I'm just I'm just you know, I'm not starting this, I'm just the current torch bearer somewhere in the middle of this timeline. That's all I am.

SPEAKER_00 28:34

Jake Messier, we're gonna put a pin in it and continue the conversation. There is just too much to unpack in this topic. Every week we find the stories worth sharing and remind you that America is still moving forward. Thanks for listening to the progress report.