When Rare Cancers Damage the Heart Valves (Carcinoid Heart Disease) and Why This Feels Personal ❤️‍🩹🥑

Why awareness, earlier answers, and patient voices matter in carcinoid heart disease and valve care

✨ What I Learned Today

I love sharing the things I learn along the way, especially when it’s something I wish patients were told sooner.

Today’s lesson? How some rare cancers can damage the heart long before anyone realizes what’s happening and why this matters more than people think!

Some rare cancers, like carcinoid tumors, can release too much serotonin into the bloodstream.

Serotonin is a hormone your body uses in small amounts, but when it stays high for a long time, it can slowly damage the liver, the lungs, and especially the right side of the heart. ❤️‍🩹

Here’s what happens:

Too much serotonin irritates the heart valves, and over time, they build up scar tissue, becoming stiff and thick.

When the valves can’t open or close right, the heart has to work much harder than it was ever meant to — and eventually that extra strain can weaken the heart and make symptoms get worse.

You start to notice your body slowing down, the tiredness, the swelling, the breathlessness and it’s hard not to feel afraid.

For years, the hardest part was that many patients heard the same painful sentence:

“There’s nothing we can do.”

And sadly, at that time, it was often true.

❤️‍🩹 My Lived Experience

I know what that sentence feels like.

My valve problems weren’t caused by cancer, but the ending was nearly identical

no surgery options, no treatments left, and I was placed on hospice. 🕯️

My family and I were preparing for the worst because every road we tried led to a dead end.

Then something happened that none of us expected.

A brand-new tricuspid valve treatment, something that didn’t exist when I first got sick. It became available through a clinical trial. I was able to receive it, and that moment changed everything. 🙌

I went from thinking my story was ending… to seeing a door open that I didn’t even know was there.

That experience is what pushed me into advocacy.

Because once you’ve lived through the words “no more options,” you never forget the feeling of hearing “we have something new to try.”

I know both sides of the story:

• the fear

• the waiting

• the breakthroughs

• and the second chance that comes when innovation finally catches up

For years, right-sided valve disease had no real treatments. So it makes sense that many doctors learned in a time when “nothing we can do” was the only answer.

Things have changed so fast that not everyone knows about the newer options yet.

That’s why sharing this matters because the more we know, the more people we can help.

❤️‍🩹 The New Options That Exist Today

⭐ Transcatheter Tricuspid Valve Replacement ⭐

A brand-new tricuspid valve can be placed through a vein not open-heart surgery.

It’s made for people who are too sick or too fragile for traditional surgery, including those with serotonin-related valve damage.

Instead of trying to repair a valve that’s stiff, thick, or heavily scarred, this treatment replaces the whole valve, giving the heart a chance to work the way it should again.

⭐ Transcatheter Pulmonic Valve Therapy ⭐

When the pulmonic valve becomes damaged or narrowed, there are now ways to replace it through a vein as well.

A new valve can be placed inside the old one so blood flows from the right ventricle to the lungs the way it should.

This can ease pressure on the right side of the heart, improve breathing, and help patients feel stronger in daily life.

🔎 A Realistic but Hopeful Note

These treatments aren’t one-size-fits-all.

Not every patient will qualify and it depends on how damaged the valve is, overall health, and what the heart looks like on imaging.

But here’s the hopeful truth: these options do exist now.

Carcinoid heart disease can be deadly if it isn’t treated, but these new transcatheter therapies are changing the story. They’re giving people real chances to feel better and live longer.

A lot of doctors weren’t trained on these newer options, so many are still learning just how much things have changed.

For many people who were once told surgery was too risky or impossible, these less-invasive therapies may offer a safer path forward and a real chance to feel better.

For the first time ever, people who once heard “nothing more can be done” may now have real choices, real hope and real paths forward. 🌟

🗣️ Why I Share This

I’m not speaking as a doctor here. I’m speaking as a patient, sharing what I’ve learned and what I’ve been through, because I want others to understand their options.

I share this because I know what it feels like to run out of answers…and I also know the feeling of hope showing up at the very last moment.

For anyone living with right-sided valve disease whether the cause is cancer, serotonin, or something else here’s what I want you to know:

❤️‍🩹 Don’t count yourself out.

❤️‍🩹 New treatments are here.

❤️‍🩹 And more are coming.

No one should face this alone.

No one should be left in the dark about options that could change their life.

If you’re living with symptoms and were told nothing more could be done, please ask again.

Ask about transcatheter options.

Ask about new treatments.

Ask another doctor. ❤️‍🩹

If you or someone you love is facing right-sided valve disease, reach out. You don’t have to figure this out alone, there are options, and there is hope. ❤️‍🩹

If this helped you understand things a little more, please share it. Someone out there may be hearing “no options” today and they deserve to know hope exists. ❤️‍🩹

If you want to learn more or connect with me and others walking a similar road, comment below or message me.

❤️‍🩹🥑HeartBridge Collective ~ Bridging hearts, minds, and innovation — one lived experience at a time.

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