Lynn

HLRCC kidney cancer patient advocate🎗️
Instagram @lynns.days
TikTok @hello.lynns.days

[Lynn @lynnsdays_]

Hi, I’m Lynn. In 2025, I was diagnosed with stage 4 HLRCC kidney cancer, an extremely rare form of RCC. I had a kidney removed and joined a clinical trial at @UCSDHealth . I’m still in treatment—and this is how I’m continuing to live and plan for my future. #HLRCC #KidneyCancer

[HLRCC Foundation @HLRCCFoundation]

HLRCC fibroids are easy to miss. A new review found they start around age 32 and are usually multiple, yet under 1% of patients had FH genetic testing before their gynecologic diagnosis. Fibroids at a young age? Ask about genetic testing. https://t.co/3DExtynSsM #HLRCC

[HLRCC Foundation @HLRCCFoundation]

Could kidney cancer run in your family? Join @kidneycan's Genetics Town Hall, Wed Oct 28, 5:30 PM ET, with Dr. Brian Shuch (@KidneyCancerDoc), Dr. David Braun and genetic counselor Lindsey Byrne. A must for HLRCC families. Register: https://t.co/hWvoAdotbH #HLRCC #KidneyCancer

[Kevin Wimer @kevinace]

Every cancer patient knows this text:

"Hey! Saw this on a podcast. Have you tried [thing]?"

Turmeric. Baking soda. Fasting. Some guy's cousin's cure that "Big Pharma is hiding."

I know you mean well. I REALLY do. But please hear me:

My doctors have read the studies. I've read the studies. I've probably heard of your thing. If it worked, I'd already be doing it, because I'd do ANYTHING to see my kid grow up.

Here's what it does to someone who isn't as stubborn as me:

1) It sells false hope to people who are desperate.
2) It makes them feel like they're not trying hard enough.
3) It makes them feel like their cancer is THEIR FAULT for not finding the miracle.

That's not help. That's homework.

So what DO you say to someone with cancer?

- "Want me to drive you to your scan?"
- "I'm dropping off dinner Thursday."
- "Want to watch something dumb and not talk about cancer at all?"

That's it. Show up. Skip the podcast.

And if you really can't help yourself, send the link to their oncologist. Not them. 🙃

[Mason @masonbgrant]

FDA's new Rare Disease Framework should include ultra-rare cancers. Cancers with one known driver need a clear path too.

I'm filing a comment asking for disease-specific guidance for these cancers, fibrolamellar included. If FDA spells out what it takes to get a drug approved, more companies will be willing to invest in these cancers.

My five asks are below. Comments are open through Dec 11.

@FDADrugs @RareDiseases @CancerResrch @FibroFoundation @reaganudall @KIDSvCANCER @FDA @FDA_KyleD

[Lynn @lynnsdays_]

@kevinace I was diagnosed stage 4 #hlrcc kidney cancer last year at age 36. I’ve been on my first line of treatment and stable so far but I can relate to the worry of “when’s it gonna stop working?” Following along with @sytses and rooting for you!!

[Lynn @lynnsdays_]

New study: HLRCC fibroids appear ~age 32, are nearly always multiple, and often lead to hysterectomy by 35. Early detection could unlock kidney screening in time. #HLRCC
#WomensHealth https://t.co/OeOB7kmU1d

[Lynn @lynnsdays_]

I’m 37 and living with stage 4 HLRCC, a rare kidney cancer. Small patient populations make large trials difficult but our need for effective treatments is no smaller. Make rare cancers an explicit priority in this framework. Our voices and our futures belong at the table.

[U.S. FDA @FDA]

FDA is transforming rare disease drug approvals. The new Rare Disease Framework Initiative will work to give patients more voice, give developers more clarity, and eliminate surprises in the regulatory process. https://t.co/dN9mby7MPN

[Lynn @lynnsdays_]

I was told for years that my #fibroids were nothing to worry about. No one told me they can be an early sign of #HLRCC, the condition behind my stage 4 #kidneycancer. If yours showed up young or keep growing, ask about genetic testing. Brushed off isn't cleared.

[Lynn @lynnsdays_]

I’m voting YES on California Prop 38 — and I’m asking my fellow Californians to join me. This proposition supports immune system research — the kind of science that saves lives like mine. Learn more at https://t.co/QRJrzc8Ee7 @YesProp38 🤍

#YesOn38 #California #KidneyCancer

[Lynn @lynnsdays_]

My liver function numbers are elevated due to my recent liver cryoablation & biopsy procedures—which means no treatment for me today. Feeling quite disappointed but there’s nothing I can do about it 🤷🏻‍♀️#HLRCC #cancersucks

[Lynn @lynnsdays_]

I’m sharing the whole story: the hard days, treatment realities, beauty, humor, advocacy and hope. If you’re living with #cancer—or loving someone who is—I hope this account helps you feel less alone. Welcome🧡 #HLRCC #AYACancer

[Lynn @lynnsdays_]

Since diagnosis, I’ve returned to teaching and completed my first #halfmarathon while still in treatment. Not because #cancer is behind me, but because I’m still here: working, laughing, loving, setting goals and building a future that cancer changed but did not erase. #HLRCC

[Lynn @lynnsdays_]

On 6/23/2025, I joined a clinical trial at @UCSDHealth combining erlotinib, bevacizumab, and atezolizumab. Treatment is still part of my life: daily medication, regular infusions, labs, scans and side effects—alongside work, marriage, friendships and ordinary days. #HLRCC #cancer

[Lynn @lynnsdays_]

On April 24, 2025, I had a nephrectomy. Losing a kidney was physically and emotionally huge—and surgery wasn’t the finish line. I had to recover while also preparing for what came next: ongoing treatment for cancer that had already spread. #HLRCC #cancer

[Lynn @lynnsdays_]

#HLRCC is an extremely rare hereditary cancer syndrome that can cause aggressive kidney cancer. By the time mine was found, it was stage 4. Suddenly, life became scans, specialists, pathology reports and decisions I never expected to make in my 30s.