From dismissed period cramps to appendix cancer discovery: Why rare disease awareness months matter—and how one advocate is making sure no one else misses the warning signs
Lindsay had terrible period cramps. For years, actually—as long as she can remember. Heavy bleeding, bloating that made her feel like her body wasn’t her own, cramps that would sideline her for days.
She kept thinking: there’s something wrong here. And she’d go to her doctors, over and over, convinced she had endometriosis. She’d done the research. She had her case ready.
Every single time? Same answer: “You’re a woman. Women have periods. Some worse than others. Try birth control. Take some Advil.”
That was it. Bandaid solution. No curiosity. No digging deeper.
Until one doctor suggested an IUD, which meant an ultrasound, which meant—finally—someone actually looking inside her body to see what was going on.
The Cyst That Wasn’t Just a Cyst
When the ultrasound came back showing a complex ovarian cyst, Lindsay wasn’t worried. Like, at all.
“I thought all women get cysts,” she told me. “This is normal stuff. I’ll go in, they’ll remove it, I’ll be home the same day. No big deal.”
The Friday before she ran her fourth marathon, she had her MRI. That Sunday, she finished 26.2 miles. A week later, doctors are telling her there's this huge, weird cyst in her abdomen that needs to come out.
Her primary care doctor said she should see an oncologist. Lindsay was like... wait, what? An oncologist? For a cyst?
That felt like overkill. So she found a different gynecologist, one who specialized in removing ovarian cysts. He seemed confident. Said it’d be straightforward. Easy procedure.
But then Lindsay did something that saved her life: she decided to at least see the oncologist her original doctor had recommended. Just to have covered her bases. Just to say she’d gotten a second opinion before going with the first guy.
That appointment changed everything.
The Layers of Misdiagnosis: Why “Rare” Doesn’t Mean “One in a Million”
Here’s what Lindsay has learned in four years of advocacy: appendix cancer isn’t as rare as the statistics suggest.
The numbers are skewed, she believes, because of systematic misdiagnosis and missed diagnosis.
When Lindsay joined PMP PALS (Pseudomyxoma Peritonei and Appendix Cancer Support), a volunteer-run global organization supporting appendix cancer patients and caregivers, she started hearing the same story over and over again:
A woman has an ovarian cyst removed years ago. The pathology on that specimen isn’t thorough enough. The appendix cancer cells hiding in that cyst go unnoticed. Years later, her abdomen fills with mucin (the jelly-like substance from appendix cancer cells), and she’s finally diagnosed, but by then, it’s advanced.
A man has a routine hernia repair. The surgeon notices mucin in his abdominal cavity but doesn't do anything about it. Years later: appendix cancer diagnosis.
Another patient: An appendix was removed years ago for what was thought to be appendicitis. The doctor didn’t run the proper pathology. Years later: appendix cancer diagnosis.
“After hearing these stories over and over, I realized we need to spread awareness about this disease because the more people that know about it, they’ll get diagnosed earlier and that will translate into saving lives,” Lindsay says.
It’s not that appendix cancer is rare. It’s that it’s overlooked.
The Doctor With a Hunch: Why Clinical Intuition Matters
Lindsay credits one physician with saving her life: Dr. Villella at Northwell Lenox Hill Hospital in NYC.
Not because Dr. Villella knew everything about appendix cancer. But because she had a hunch. She suspected something. And she was willing to investigate.
“After the surgery, she told my parents, ‘I have a hunch what it is. Wait until everything comes back,’” Lindsay recalls.
But she hears from countless patients in PMP PALS support group calls who had different experiences:
“I’ve had this removed, close me back up.”
No hunch. No investigation. No second layer of curiosity.
That’s why the awareness matters. That’s why education matters. Not just for patients, but for providers.
“It’s spreading awareness not only to patients, but to providers also that need to learn what appendix cancer is,” Lindsay emphasizes. “And then there’s another layer to it, the treatment of it, because the treatment for certain types of appendix cancer is not common and not all hospitals even offer that treatment.”
Two Definitions of Advocacy: Self-Advocacy and Awareness
When Lindsay defines advocacy, she offers two meanings, both born from her own experience.
The first: Self-advocacy.
“Advocacy meaning self-advocacy and trusting your body, listening to your body and being confident and feeling empowered to push back on doctors and really fight for answers,” she says. “If I had listened to doctors who were just downplaying all of my symptoms, I would’ve either been misdiagnosed or diagnosed too late for any kind of treatment.”
Lindsay had to become an expert in her own body. She had to trust her instinct that something was wrong when doctors dismissed her symptoms as normal. She had to push for the ultrasound. She had to get the second opinion.
The second: Spreading awareness.
“Advocacy to me is telling as many people as I can that appendix cancer is a thing, that it exists, that these are the symptoms to look for. I strongly, very strongly believe that appendix cancer is not as rare as the numbers show.”
This is where awareness months become crucial.
Why Awareness Months Matter for Rare Diseases
August is Appendix Cancer Awareness Month. If you haven’t heard of it, that’s kind of the point.
It’s a time when organizations like the Appendix Cancer Research Foundation and PMP PALS try to make noise about something almost nobody knows exists. Every social post, every 5K, every article—it’s an attempt to break through the silence.
Why does it matter? Because awareness literally saves lives.
A person sees Lindsay’s story and recognizes their own symptoms. A doctor reads something about appendix cancer and suddenly that weird patient presentation clicks into focus. A family member connects the dots between a diagnosis that happened years ago and new symptoms appearing now.
One month dedicated to talking about something rare? That’s how people find out they’re not alone. That’s how misdiagnosis gets caught. That’s how someone whose doctor would’ve just closed them back up after surgery instead gets the pathology work that changes everything.
Lindsay recently hosted the first Manhattan location of the ACPMP 5K. She expected a small gathering of friends and family.
Over 60 people showed up. They came from as far as Arizona and Texas.
And they raised over $15,000, contributing to an overall total of over $200,000.
What Lindsay Is Actually Doing About It
Lindsay has fallen into all the main buckets of patient advocacy (and honestly, some people spend years figuring out where they fit—she just kind of... does it all).
Awareness: She’s everywhere. Instagram (@WhenLifeGivesYouLamn), speaking at events, hosting the first NYC 5K for appendix cancer research, telling anyone who will listen that this disease exists.
Fundraising: The 5K raised over $15,000 this year. The whole thing started because she figured it’d be a small gathering of friends and family. Over 60 people showed up.
Research advocacy: This is where she’s really passionate. There’s a trial called BROMAC—an enzyme derived from pineapples that, when applied directly to the mucin in the abdominal cavity, has shown real promise in Australia. But getting it approved in the U.S.? Still stuck. “They’re ready to go,” Lindsay told me with frustration. “They’re actually ready to go.”
She wants to help push these trials through. Wants to figure out how to accelerate getting new treatments available to patients who literally have no other options.
Building community: She just joined the board of PMP PALS. Planning the October in-person meetup. Speaking at the Mike Weber Senior Memorial Foundation fundraiser (named after someone who died of appendix cancer ten years ago).
All of this matters because it’s interconnected. Awareness drives fundraising. Fundraising funds research. Research eventually influences policy. You can’t separate one from the others.
The Long Game: Surveillance and Service
Lindsay is now four years out from her diagnosis with no evidence of disease (NED).
But NED doesn’t mean cured. It doesn’t mean safe. It means: no cancer visible right now.
For appendix cancer patients, surveillance is lifelong. The possibility of recurrence is always present.
“I have to be on surveillance. I’m on watch and wait for the rest of my life. There is a chance it will come back,” Lindsay says candidly. “And so knowing all of that, I’m just trying to flip it and instead of being worried about it, just continue to try and make a difference.”
She recently joined the board of PMP PALS. She’s planning their annual in-person October meetup. She’s speaking at the Mike Weber Senior Memorial Foundation fundraiser—named for a patient who died of appendix cancer ten years ago.
She’s also planning next year’s 5K, hoping to build on this year’s success.
This is the long game. Not the sprint of active treatment, but the marathon of living as a survivor, carrying the weight of knowing too much, and choosing to use that knowledge to help others.
The Magic Wand: Everyone Knows Appendix Cancer
If resources were unlimited, if she had all the power in the world, what would Lindsay do?
Not find a cure. She recognizes that’s too simplistic for a disease as complex as appendix cancer.
Instead: “If I had all the resources, it would be to teach everyone about what this is. I don’t know if that means paying people to go door to door to everyone, but if you mentioned something like breast cancer, everyone knows what breast cancer is. So how could we take some funding to teach everyone what appendix cancer is?”
That’s the real victory. Not a cure, but awareness. Early detection. Doctors with hunches. Patients who trust their bodies enough to push back.
A world where appendix cancer isn’t hidden in the shadows of misdiagnosis, but visible, understood, and caught early.
August Is Appendix Cancer Awareness Month: Here’s What You Can Do
If you’re reading this in August, or any time of year, here’s why awareness months for rare diseases matter and how you can participate:
Learn about appendix cancer:
Low-grade mucinous neoplasms (LAMN) present with bloating, abdominal pain, frequent urination
Be aware of vague gynecological symptoms that don’t respond to standard treatment
Understand that appendix cancer often masquerades as ovarian disease
Donate to research:
Appendix Cancer Research Foundation (ACRF)
PMP PALS (the oldest organization supporting appendix cancer patients)
Spread awareness:
Share Lindsay’s story
Follow @WhenLifeGivesYouLamn on Instagram
Sign up for the upcoming PMP Pals One in a Million Virtual 5K
Attend local 5K events if available
Talk to your doctor about appendix cancer
Trust your body:
If something feels wrong, keep pushing until you get answers
Get second opinions
Ask about pathology results when specimens are removed
Connect With Lindsay
If you want to reach out to Lindsay or learn more:
Instagram: @WhenLifeGivesYouLamn (LAMN because that was her pathology)
Email: lindsay@pmppals.net
PMP PALS Website: Find support groups, resources, and community
Final Thoughts
Lindsay’s story is a perfect storm of luck and advocacy. She got lucky that an oncologist had a hunch. Lucky that she pushed for that second opinion. Lucky that she had access to multiple doctors and the privilege of being able to see them.
But she also did something harder: she listened to her body when her doctors told her to stop complaining. She pushed back. She got multiple opinions. And then, when she got the diagnosis, she refused to let it be the end of her story.
Four years later, she’s on the board of the oldest appendix cancer support organization. She’s speaking at fundraisers. She’s hosting 5Ks. She’s sitting in support group calls listening to people discover their diagnosis and thinking: I can help you. You’re not alone in this.
That’s what advocacy looks like for diseases people don’t know exist.
It’s not always political. It’s not always visible. But it saves lives.
Because somewhere, someone will hear about appendix cancer for the first time and recognize their own symptoms. Or their mom’s. Or their friend’s.
And that person won’t have to feel as alone as Lindsay did.
August is Appendix Cancer Awareness Month. If you know someone with unexplained abdominal symptoms, GI issues, or a history of ovarian cysts, encourage them to learn about appendix cancer. If you’re experiencing symptoms, advocate for yourself. Get the second opinion. Trust your body. You might be saving your own life.
