Males Can Get Breast Most cancers Too

Jake Messier, recognized with stage 4 estrogen receptor–constructive invasive ductal carcinoma, runs the most important TikTok account targeted on metastatic breast most cancers. He started sharing his story after realizing how little consciousness exists round male breast most cancers — not simply amongst males, however throughout the well being care system itself.

“If you’re a man recognized with breast most cancers, you all of a sudden end up in a pink world,” he mentioned, describing a second when he awakened from surgical procedure with out a binder — as a result of the one ones had flowers. That’s when he realized this was about greater than consciousness; it was about self-advocacy.

Drawing from his 30-year profession in nonprofit advertising, Messier makes use of TikTok to problem misconceptions and construct neighborhood. Whereas most of his 30,000 followers are girls, he says, “If 4% are males listening to this message, that’s a win.” By talking brazenly about remedy, concern, and survivorship, he helps others really feel seen — and fewer alone.

CURE: What initially motivated you to start out sharing your breast most cancers journey publicly, and the way has that have developed over time?

Messier: I didn’t know males may get breast most cancers till I bought breast most cancers. That’s the place it began for me.

If you’re a man recognized with breast most cancers, you all of a sudden end up in a pink world — as a result of 99% of individuals with breast most cancers are girls, and simply 1% are males. So naturally, virtually all of the promoting, consciousness, funding — all the things — is geared towards girls. As a person, you’re simply dropped into that world and anticipated to adapt.

One particular second that basically opened my eyes was after I realized the difficulty wasn’t simply that males don’t know they’ll get breast most cancers — it’s that the trade and even suppliers don’t appear to know both. You stroll into any ready room, and it’s all pink and flowers. It’s all designed to assist girls. At Dana-Farber, I took a photograph of the signal on the breast most cancers flooring. It says, “The Heart for Ladies’s Cancers.” And I keep in mind considering, “Positive — however I simply had a mastectomy. I’m standing right here too.”

Once I awakened from surgical procedure, groggy and out of it, one of many issues I anticipated to be sporting was a surgical bind — a Velcro wrap that goes round your torso to maintain all the things in place. But it surely wasn’t on me. I requested, “Why don’t I’ve a bind on?” They usually mentioned, “Effectively, the one ones we had had flowers on them, so we selected to not put one on you.”

Wait, what? You suppose I’d reject a medical machine as a result of it had flowers on it? That was a second that caught with me. It made me understand this wasn’t nearly elevating consciousness — it was about self-advocacy. That’s after I began talking up: “Why can’t we do that in a different way?” And folks began listening.

On the time, I already had a TikTok account — only a private one the place I shared bits of my every day life. I had perhaps 1,000 followers. However as soon as I began speaking brazenly about breast most cancers — sharing the highs and lows, crying after I wanted to, celebrating the milestones, and providing actual recommendation — issues began to develop. I’m now at almost 30,000 followers.

What are among the most typical misconceptions that you just encounter, and the way do you deal with them in your advocacy?

Males have breast tissue too — it’s nothing to be embarrassed about. However as a result of breast most cancers is seen as a “girls’s illness,” males usually delay getting checked. I waited 4 months after discovering a lump, considering, “It could’t be that.” Many males wait even longer — and by then, it’s usually superior.

As soon as recognized, it might probably really feel isolating. All the things is pink. Each brochure says “she” and “her.” Even one thing as routine as a mammogram feels jarring when it’s not designed with males in thoughts. That alienation makes it tougher for males to remain engaged in remedy — and that impacts outcomes.

The reality is, extra males die from breast most cancers just because they’re unaware, uncomfortable, or ashamed. That should change. Although 96% of my social media viewers is girls, if 4% are males listening to this message, that’s a win.

How has connecting with others by social media form your individual therapeutic and perspective on survivorship?

I spent about 30 years in nonprofit advertising — digital media, PR, promoting, technique — and even ran my very own company earlier than I offered it. I labored with organizations like WGBH, Antiques Roadshow, and the Boston Symphony Orchestra. So after I was recognized with breast most cancers, I took all the things I knew about constructing consciousness and utilized it to myself as a model — with one clear message: males can get breast most cancers too.

I understand how advertising works. I do know what connects with individuals. And if the one factor I’m “promoting” is consciousness that saves lives, then I be ok with that. I’m not out right here promoting hats or chasing viral fame. It’s nearly making individuals cease and suppose.

As my TikTok grew, I began connecting with individuals from all walks of life — regionally, globally, caregivers, survivors. The most cancers neighborhood on-line is highly effective. Folks have reached out to say they’ve watched two years’ price of my movies in a weekend as a result of they only bought recognized and didn’t know the place to start out. And though I all the time remind folks that no two most cancers journeys are the identical, generally simply seeing another person undergo it helps.

I attempt to be trustworthy — concerning the concern, the remedy, the setbacks, and the sudden turns. I used to be advised my path could be chemo, then surgical procedure, then radiation, and I’d be performed in 10 months. However two years later, I’m nonetheless getting scans and figuring issues out. It’s not a straight line for many of us — and that’s okay.

That’s the place the neighborhood is available in. On days I’m struggling, I flip to them — they usually present up. They get it in a manner family and friends generally can’t. And it’s not nearly me. I need the 27,000 individuals following me to attach with one another too. That’s how we construct one thing larger than only one story. That’s how we construct an actual neighborhood.

Transcript has been edited for readability and conciseness.

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