[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, A podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:17] Men often don’t think of themselves as having breasts. For men, it’s their chest or their pecs. So it may come as a surprise to learn men are at risk for breast cancer. The fact is men have breast tissue and can get breast cancer. In the US less than 1% of all cases occur in men, but it does happen. Today we’re joined by Jake Messier, a man living with metastatic breast cancer after being misdiagnosed twice, and finally learning in August, 2024 that it had advanced.
[00:00:48] Jake openly shares his story across active social media platforms, social, and is dedicated to spreading awareness of male breast cancer, as well as the distinct mental and physical health struggles that go largely unaddressed when a man is navigating what is typically seen as a woman’s disease. Jake, we’re honored to have you on the show today.
[00:01:08] Thank you for joining us.
[00:01:10] Jake Messier: Hey, thanks so much, Adam. It’s great to be here.
[00:01:12] Adam Walker: Well I wanted to do, I wanted to have this conversation for a while. I think it’s an important one, and so I, I appreciate you taking the time and sharing your story. We know that male breast cancer is rare, so how are you diagnosed?
[00:01:28] Did you find a lump? Get, kind of walk us through that process.
[00:01:32] Jake Messier: Sure. So if you go back to the, really the spring of 2023. You know I don’t remember how I found it, but there was a lump in my armpit and I was like, that’s weird. I remember literally thinking, that’s weird, and I just didn’t think anything about it because why would I, right?
[00:01:52] And so I went through a couple more months and I was like, well, that didn’t go away and that didn’t, it’s not doing anything. It’s just sort of there. So I decided to go to my primary care. So by the time I got my appointment in my primary care, it had been about four to five months after I had found this lump.
[00:02:09] Before I went into my primary care and my primary care doctor was like, yeah, that’s a lump in your armpit. He rattled off about 10 things that it could be, and I don’t think any of them in my memory were breast cancer. But he said, just to be ca just to be careful to send you for a mammogram and a biopsy, but you know, I’m pretty sure you don’t have breast cancer.
[00:02:27] I’m like, okay, great. So I went and I then, you know, we fast forward passed my mammogram and biopsy and all those things. I went back to like. I am so sorry. I said, listen, we’re cool. It’s just, you probably shouldn’t say that to other people if you just don’t know. So it was fine, but it was a learning experience for the doctor as well.
[00:02:47] So, yeah, it’s really rare.
[00:02:49] Adam Walker: Yeah. And you said you were misdiagnosed twice, right? What, like tell me more about, about that part of your story.
[00:02:55] Jake Messier: So when I was originally diagnosed I, they said I had stage two invasive ductal carcinoma. Okay. HER2 positive. And I basically went through the process that I think everybody goes through, right?
[00:03:14] You go and you have your mammogram, your bi, your biopsy, and then you meet your oncology team. And I remember meeting my initial oncologist and he’s like this is the run of the mill breast cancer. Right. And he put, you know, he put it in air quotes, right. This is the, this is what people, you know, this is what women get.
[00:03:30] And everybody referred to it as women. This is what women get. And you know, you sort of do your time in chemo and surgery and radiation and then you know you’re going to be just fine. I was, you’re you’re going to be just fine. Yeah. So as I went through that process with my former cancer center, I’m now at Dana-Farber.
[00:03:47] Are things are great at Dana-Farber. Dana. Dana-Farber is amazing. Yeah. Yeah. It’s, it really is. But before I got there when I went, I gone through chemo and I had gone through three surgeries. There was my mastectomy and then two additional ones were needed. And when I got to radiation planning my radiation oncologist found six more tumors.
[00:04:10] Which automatically advanced me to stage three, and they were worried about a lesion on my hip. But at that time, because again, it was all in my chest wall area, and so they hadn’t, they weren’t really thinking that it was stage four, metastasized my hip yet, but they had found a lot more tumors during the radiation planning, which was scary, which ultimately led to
[00:04:31] us deciding to make a switch to go to Dana-Farber. Right. And that’s when we did, we made that switch. And so I did my radiation and other things at Dana-Farber, and that’s when I was diagnosed stage four. Because they did confirm that it had metastasized in my hip that the lesion that they had thought might be inflammation, might be a lot of other things, and in fact was breast cancer
[00:04:52] that had moved to my hip.
[00:04:54] Adam Walker: Wow, man. That’s a lot. And like, think back, thinking back to that, you know, early, I mean, you know, you had a lump. I mean, were you thinking cancer at the time? And did you even know that breast cancer was even on the table at the time?
[00:05:09] Jake Messier: I tried to go back because breast cancer’s now taken over my life.
[00:05:12] Of course. Yeah. Right. I talk about it everyday.
[00:05:19] Trying to remember, did I know that breast cancer was a thing prior to me getting breast cancer? And the answer is I don’t think I did. Right. I don’t, you know, and that’s not, you know, 93%, you know, there’s stats out there that say 93% of the public don’t understand that men can get breast cancer.
[00:05:37] And another alarming stat is that there’s something like 80% of people that are involved directly with bar breast cancer, but not in breast cancer. Right. You know, caregivers, husbands, wives right. Mothers, sisters, the community, everybody like that. Yeah. Those people don’t know that men can get breast cancer.
[00:05:56] So breast cancer is ever present. So, you know the, when you ask me, I don’t think I did. And that led into a lot of feelings that I know a lot of men feel when they’re initially diagnosed with breast cancer, which might have been a follow up question to this one which is there’s, you know I’ll put this, I’ll start with this.
[00:06:25] I go to the eighth floor at Dana-Farber, which is the breast cancer floor. And I step out of the elevator, and I live in Massachusetts, which is largely known as a really liberal state, and I live in Bo. You know, I go to Boston, which is a really liberal city and all these things. You think that when I step off the elevator and I am onto the Center for Women’s Cancers, you know, but that’s just the pervasiveness
[00:06:53] breast cancer being a woman’s disease. I have now been in this for two years. I’ve gone to breast cancer conferences where I’ve been welcome and not so welcome and I, and that’s a real thing. There’s women out there that don’t feel like men should have a voice in breast cancer because men have voice in too much of the world.
[00:07:13] So you’re not going to take away this from me. And I’m like, listen, I’m not trying to take away your voice. I’m trying to get mine heard. And the 2,800 guys this year that are going to get it. And so there’s this, there’s somewhat of a resistance, but then mostly what I’ve had is this vast welcoming into the breast cancer world, but honestly, because I decided to lean into that, right?
[00:07:37] I don’t have a problem wearing pink. I didn’t have a problem wearing pink before 2023, and I don’t have a problem with it now. Waiting are all. There’s this feeling like, oh, you’re a guy every time you go see anybody. Oh my God, this is the first man I’ve seen with breast cancer and you know, I’m talking about a 40 year nurse that’s been working in oncology for a long time.
[00:08:02] And she’s like, well, you’re the first guy I’ve had. And I’m like, so there’s this unicorn factor for you out there, right? That everybody wants to be on your case. And, but that also leads to. I don’t belong in the breast cancer community. Right. At least those feelings started, right. I’m not, you know, there’s thousands of breast cancer organizations out there, and they’re largely all geared towards women.
[00:08:29] Right. You know, and look, I am, I’m going to say this right now, it is a 99% to 1% conversation. I do not think that men need to have equal time and equal, not at all. Not at all. A seat at the table where we can raise our hands and say, well, you know, you keep on saying women and we can raise our hands. And men, you know, a seat at the table is really what I think we’re looking for at this point.
[00:08:57] I, I, there’s three major male breast cancer organizations out there that, that do their thing, but they’re largely talking to the same people that I’m talking to the male breast cancer community.
[00:09:14] It’s, there’s this anecdotally, and I’ll say this upfront, that there has never, and I’ll say never because it’s, I’ll put an asterisk next to that. Been any research done into the differences between male and female breast cancer. There have been, you know, billions of dollars spent in breast cancer research and virtually none.
[00:09:37] And I say virtually because there’s one study going on right now at Dana-Farber.
[00:09:44] Determining if there’s a difference in this type of medication versus it in the biology of male versus female. Up until that point, largely no research has ever been done, even if it’s the same disease. And now, yes. You know, so my oncologist treats me the same way that he treats his dozens of other female patients.
[00:10:03] He doesn’t. He’s like, I’m going to give you Tamoxifen and I’m going to give Zenio. I’m going to do the same thing goes. I don’t know if those are the best things for you or not, because nobody’s ever told me whether they are or not, and you know to back that up, Dana-Farber, as far as we know we’ve looked at lots of places around the world.
[00:10:21] Dana-Farber is the only place that has a dedicated male breast cancer department, and my oncologist is the share of the male breast cancer department. And he comes to me all the time and he’s like, Jake, I don’t, I don’t know anything about breast male breast cancer. That’s because he doesn’t, because they never studied it.
[00:10:38] And he’s like, I’m going to treat you like I treat the women. So I’m on Tamoxifen and Zenio and you know, trying to tamp down my estrogen and all those things, but they don’t know if that’s the best course of action for me or not. Just simply. So you have all of these things that when you get to a guy that gets diagnosed with breast cancer.
[00:11:01] He’s being in essence by society, treated like a woman and he’s in this, he’s in these pink and flowers and all these things to where if you are not comfortable enough in your masculinity or wherever you are at, there’s a lot of guys that refuse treatment, that go to treatment really late. There’s numbers out there that suggest that
[00:11:21] 30% male breast cancer is 30% more fatal than female breast cancer. And that is literally because of the social stigma. It’s not because the, it’s not because the disease is more aggressive, it’s because the disease progresses so far before they actually get checked out. And there’s actually been stories about guys that have gone to treatment.
[00:11:42] Have stopped going to treatment because they can’t deal with the emasculation. And I, you know, and there are lots of people that say that’s dumb. And I will, I, I side with them, but I, yes, you want to make sure your health and I go to those people, those same people, and I say, look. We as the male breast cancer community, will work on the toxic masculinity of some of our members.
[00:12:01] That makes them not want to go to treatment, but you can paint your waiting room green, and that’s a way easier solution than me dealing with 3000 years of human kinds, male toxic masculinity. You can paint your waiting and that’s a much easier solution to feel, make people feel a little bit more. So I went through solid six months of
[00:12:24] emasculation and just feeling where do I belong and where do I sit in this and all of that. And I came out the other side going, listen, just because I go to the center for women’s cancers doesn’t mean my mastectomy scar doesn’t exist. It doesn’t mean that all, you know, I still belong here whether
[00:12:45] i’m going to be at the table or not. I’m going to make a seat at the table. And I think that’s what I’ve done with my social.
[00:12:50] Adam Walker: That’s what you’re doing. That’s why we’re here. That’s why we’re here. I love that. Right. I love it. So, so I mean, you mentioned, you know, you mentioned the medical perspective. You know, you mentioned like the pink doctor’s offices.
[00:13:03] I, I wonder what is your emotional experience like sharing your story with just friends and family and educating them on this is a thing and this is what it looks like. Like how has that gone?
[00:13:18] Jake Messier: Well, you know. Being even leery just to talk about it with Yeah, I’m sure. Friends. And we’re like literally just friends and family.
[00:13:27] Like, I’ve got cancer and you know, I was 51 at the time, right? Yeah. And in relatively good. I had lost a hundred pounds. I had done all this work on myself in 20 21, 20 22, I lost a hundred pounds. I turned, I was in deep therapy, I’d done all these things. Right. Wow. And in 2023 I got diagnosed. And I think where most people start that self-reflection journey.
[00:13:51] Of you get cancer and now all of a sudden you’re like, well, what does it all mean? And you start that journey at the same time you’re going through cancer, and that’s very difficult. I had done all that in the two years prior to me getting it, and so I, I almost felt like, okay, I’m in the best possible position to not only go into this cancer journey and help myself, but if other people find it
[00:14:18] comforting, humorous, whatever those things are that I’m trying to do on social media to get them through their day right then that’s what I’m going to do. And that’s when the TikTok channel started and it was just me, you know, like the thousands and thousands of other people that are out there documenting their cancer journey.
[00:14:33] Adam Walker: Yeah, mine
[00:14:34] Jake Messier: was just a little bit more unique because I have male breast cancer, so, right. You know, as we know, social media, it’s all about the oddity and the thing, the unique thing. Right. So I was like, okay, I’m a guy with breast cancer and you know, I’ve been a dj, I’ve been a news anchor, I’ve done these things so I can, you know, I can portray on camera, have a personality riff.
[00:14:50] Got it. Right, of course. And so I was like, okay, well and also I had worked in. I owned my own marketing agency for nonprofits. We were the largest marketing agency in New England for nonprofits. Oh, wow. Okay. And because of that and I had worked in non, the non, the Boston nonprofit ecosphere for decades.
[00:15:11] Okay. I knew the power of branding. So when I sold my agency at the beginning of 2025. I basically said, I’m going to turn everything that I know about social media, pr, graphic design, communications, messaging. I’m going to turn them onto my brands. Yeah. Because I’d always done it for everybody else.
[00:15:31] Yeah. And I just created the guy with stage four breast cancer. And that’s why it’s, you know, I’ve just treated it like I would treat a client and I’ve, you know, done content calendars and we post every day and twice a day sometimes, and we respond to the audience and all the things that you’re supposed to do as a social media guy.
[00:15:47] Adam Walker: I love it. Yeah.
[00:15:48] Jake Messier: I just did. And so then it grew and grew, and I, what I found was my audience, if I had to make some choices here, right? Because, and again, me understanding social media and understanding how it all works, I was like, well. If I just talk to the male breast cancer community, I’m talking to a very small community.
[00:16:05] Right? So I have to bump it up. So then I started talking to the breast cancer community and I was like, well, I think I can bump this up a little bit further. So now I start with the cancer community, right? Okay. And what I found is that even though I have breast cancer. Other rare cancer people are like, yes, you get me.
[00:16:25] You understand me?
[00:16:27] Adam Walker: I wouldn’t have thought of that, but yeah. That makes sense.
[00:16:30] Jake Messier: The women that are in colorectal cancer, right? Yeah. There’s only 5% of women that could, it’s mostly men. They’re like, oh, you get me, you underst. You’re saying the same things that I feel every day about, you know, not feeling heard and not feeling listened and all those things.
[00:16:44] Yeah. My, my audience, which is now 94% women, ages 35 to 54. I mean, I know my audience, I know who I’m talking to. Love how specific that was. That was so good.
[00:16:59] I’ve been doing this for a long time and so you know, I know what I’m talking to and I know who I. Who I’m talking to. Right. And so I made these decisions and I specifically went to TikTok on purpose.
[00:17:12] Yeah. You know, again, that’s amazing having Right, having done this for decades. Yeah. I’ve seen when Facebook started off and everybody was like, well, that’s for children. And then, you know, five years later it’s adopted by the mainstream, Instagram, 16 year olds on that. It’s adopted by the main every platform.
[00:17:28] So again. I, four years ago, I was like, well, TikTok seems to be that next big thing. Oh, big time. Yeah. Let’s try to figure out what that is. And so me having watched other, I hate using the word influencer, but I guess that’s what I am, because I fair enough, influence people to have a better day. Yeah. But all the other things that go with the term influencer, I hate.
[00:17:48] Right? Yeah. But, you know I decided to start there. I’m talking to people that probably are not going to get talked to about breast cancer, let alone male breast cancer at any time. Gen largest time seems working where I’m already established there, right? Other people are going to be coming over there as TikTok starts.
[00:18:18] I’ve been there for four years and I’ve established my audience and all those things, so. A lot of this is happenstance, but a lot of this is planned because I’ve been doing this for a long time.
[00:18:27] Adam Walker: Yeah, man, I love that. I love that. So a, as your audience has changed, as your platform has changed as your knowledge about your cancer has changed, how has your message evolved?
[00:18:39] I think what you said is it’s gotten a lot broader. I think that’s what I heard you say. Like it’s gotten significantly broader. You’re bringing more people to the table. Any other nuances to that you’d like to share?
[00:18:48] Jake Messier: Well when I first started. You know, I was like, I had to, I was, you know.
[00:18:56] People are not on TikTok to talk about sad things. No stage.
[00:19:01] Adam Walker: No, they’re not. No.
[00:19:02] Jake Messier: This is not what they’re there for entertainment. It’s why I’m on there. I’m on there for entertainment. Right? Yeah. And so really for my first year, it was trying to sneak in. Like I’d show I have four adorable dogs.
[00:19:16] Right. I have two Australian Shepherds and two us. And I would have an awesome video of them just looking at the camera. Yeah. And I’d be like, you know, Amity, you know, Amity’s, one of the name of the dog, Amity doesn’t care that we stop your scroll. That now you know you have male breast cancer. Right. And people you know and my, my, at least initially I was like, well, if I can get five people a day to know that guys can get breast cancer.
[00:19:40] Like, then I’m, you know, changing the world a little bit at a time, right? Because there will be a synapse that fires when those, when either that guy or that woman is later on in life and they’re like, oh, that’s a lump. That’s weird. But I know that guys can get breast cancer because, and now I’m not going to wait the five months.
[00:19:57] Right? And so, you know, and then that’s grown to, well, how many people can we talk to today? Right? And how many conversations can we have? And how, that’s why I know. The content part of this job is actually pretty easy. I don’t have a problem coming up with the idea and creating the content. I think where my issue comes is trying to keep up with the community.
[00:20:19] The community management, right? Yeah. Thanking people for trying to get respond. All the comments. Like all the comments. Yeah.
[00:20:25] Adam Walker: All, yeah. All those things. And
[00:20:26] Jake Messier: I also. You know, there’s probably a reason why I’m not bigger is because I don’t play by social media’s rules. I don’t care what the algorithm thinks.
[00:20:37] The algorithm, TikTok algorithm, wants me always to be finding, getting people that have more follower accounts than me because that’s what grows TikTok, right? They want it always going up. I’ve got 33,000 people roughly on TikTok. If you have breast cancer in your profile somewhere, and I can tell that you’re my, my, mostly my sister, right?
[00:20:59] My, my warrior sister, right? But I’m going to be friends with you. I don’t care that you have 125 followers. I don’t care. I, it’s way more important to me that you feel seen and heard and loved and appreciated and respected as a cancer patient that’s also there trying to do their own thing. I tell everybody, I started off with one follower.
[00:21:18] I started off with one and I was talking to one person, and that person turned into two when that person turned. So if you’re talking to 25 people, you can impact 25 people’s lives. And so I tell people that all the time. Don’t worry about your follower account. Worry about what your message is.
[00:21:32] Adam Walker: That’s right.
[00:21:32] And your message will find your followers. That’s the goal.
[00:21:35] Jake Messier: Absolutely. And that’s sort of where it’s happened. You know we’ve had amazing, you know, working with Komen, you know I, this was my first Komen walk yeah. Nice. Back in October at the Massachusetts, at the UMass, and you know, they were like.
[00:21:48] Oh my gosh, we have a guy here. I was like, yeah it’s not you also, they, you know, especially a metastatic guy, right? So the metastatic marchers march up front and they’re like, here, you hold the sign. Because I’m like, it’s a guy metastatic.
[00:22:00] I don’t mind being, I don’t mind being used. And I say that if you’re going to use me, especially if you have a platform like Komen or like some of these other pharmaceutical, wherever you’re at, if you’ve got a platform and you want to put me on it.
[00:22:16] And more guys know that they can get breast cancer. Great. No problems at all. No problems at all. Yeah. So I’ll, you know, I don’t care if your podcast is the Komen podcast. I don’t care if you’ve got four people following your podcast. Those four people are going to know that guys can get breast cancer.
[00:22:30] Adam Walker: Yeah.
[00:22:30] And that’s important. That’s important. Well Jake I could talk to you a lot longer, but I, but this is a short show, so I gotta wrap it up. Last question for you. What do you want people to know about male breast cancer?
[00:22:47] Jake Messier: In two different ways. And the reason is because there’s what I want people to know about breast cancer and what people want to know about male breast cancer, and those are two different answers. Fair? That’s fair. Yep. My hardest part of my entire breast cancer journey started the day I rang the bell.
[00:23:06] Everybody thinks it’s chemo or surgery or radiation or just diagnosis and all those things. And believe me, those things were tough. They weren’t easy. The notion of survivorship, the notion of I rung the bell, my nurse navigator’s gone. My, all these things that I depend on are now gone.
[00:23:25] And everybody, oh my gosh you did it. You survived, you made it, you did all these things and you know you’re the bell, and now you just go back to work the next day. You’re like I don’t the same. That six months after ringing the bell was the most turmoil and chaos that I was in, in a mental health standpoint.
[00:23:45] It’s one of the reasons that I’ve decided, you know, to, I, I’ve been asked to join a lot of different organizations, you know, being the guy, right? Yeah. And I’ve decided to hitch my wagon to an organization called The Light Foundation out of Southern California because they are tackling
[00:24:03] survivorship in a way that nobody ever has there. There we are deciding that one-on-one coaching, not therapy, whatever, but somebody to act get you through the first six months Yeah. To get you through to, to reintegrate back into life. That’s the key. And they’ve done all this research that shows the other side of that happens.
[00:24:26] It makes it so people can really, truly live. Yeah. And not just struggle and survive. Yeah. It’s that whole concept of thriving and surviving. Yeah. And so if you take that on the other side and really that men feel that same kind of isolation and that same kind of Yeah. All of the negative feelings from the day of diagnosis.
[00:24:50] And that’s the problem is that women, when they are diagnosed. They get welcome to do this sisterhood of we’re going to take care of you. And I don’t think it’s intentionally exclusionary No. That doesn’t happen with men. Yeah. I just don’t think, people don’t think about it or they don’t think that men want that or whatever the case may be.
[00:25:11] And so there’s, if there’s a guy with breast cancer in your life, know that he is struggling in a slightly different way. Than the woman with breast cancer life. I mean, I think most people when you the stats are one in eight women, most people know somebody, whether it be a friend or a relative that is been affected by breast cancer.
[00:25:33] Right, right. It’s actually pretty rare that you realize there are men out there that are affected by the same thing, so it’s all about the community.
[00:25:48] This community. There are lots of cancer communities out there, but we’ve got one of the best ones. People just, it’s love and joy and gratitude and just try to make your day better, and that’s what we try to do.
[00:25:57] Adam Walker: Man. I love what you’re doing. I’m going to go follow all your accounts. If somebody does want to follow you, where can they find you?
[00:26:04] Jake Messier: Right. You can’t really look up male breast cancer on the internet and not find me. But fair. I’m the guy with stage four breast cancer. That’s my sort of handle on Instagram, TikTok, I’m even on putting stuff on LinkedIn now. And a valuable audience on LinkedIn as well. Yeah, there is. Yeah. So, so the guy with stage four breast cancer.
[00:26:22] Adam Walker: Alright, well Jake, thank you so much for joining us on the show. We’re going to have to have you back For sure. Thank you for the work that you’re doing. It’s making a huge impact.
[00:26:31] Jake Messier: Thank you my friend.
[00:26:37] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit real pink.Komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter at AJ Walker or on my blog adam j walker.com.