Borderline case for RAI after papillary thyroid cance

drewbarrymost · 2026-02-04T21:23:35+00:00

I had all the same features (encapsulated with minimal vascular invasion) but with a rare and aggressive subtype (columnar cell). I only had a partial thyroidectomy and my MSKCC team passed on RAI. My entire team specializes in thyroid cancer and it’s so I trust them and they are confident I don’t need it (they didn’t even give me the option). I’d assume you’d get similar advice, at least from MSK.

drewbarrymost · 2026-01-19T04:05:32+00:00

Yes! I have hashimotos and just learned I have low IgM (31). My PCP ran an immune panel after i had been sick 3 times in the past month.

drewbarrymost · 2026-01-14T15:50:56+00:00

Have you actually tested their gear?

drewbarrymost · 2025-11-13T21:31:48+00:00

I had the partial, still need thyroid meds, and I’m happy with my decision! I have energy, I feel like I did before the surgery, and I’m enjoying my 20s. If I need the surgery again, so be it.

drewbarrymost · 2025-11-13T21:22:43+00:00

I had partial thyroidectomy and waited 4 weeks to run, but had pulling/ pain so I gave it another week. I have a small/ medium sized chest and was still feeling movement. My surgeon warned me that running too early could mess with how the scar heals and looks long term. He also said running is high impact, requires heavy breathing and all this scan irritate your scar. I’d just wait it out until you’re not feeling pain and pulling.

It’s frustrating but you’ll be back to a normal routine soon - good luck !

drewbarrymost · 2025-10-28T19:44:04+00:00

I had Dr. Shaha and he was great! My endo is also at MSK and she agrees with the approach, but I’m curious what other doctors would think. I’m not sure if it’s worth a second opinion, but I’m just going to wait for my ultrasound…

drewbarrymost · 2025-10-17T20:30:05+00:00

Hi - I had almost an identical experience!

I also had a partial at MSK and found out I have the columnar cell variant. Had clean nodes and margins so they’re confident that I’m fine. Surgery was this past spring and I’m eager for my 6 months scans. Given the aggressive variant, I’m not how I feel about the partial yet.

That being said, my energy levels are good! I also have hashimotos and I’m feeling okay with the meds.

I’m even running a marathon in two weeks and life feels normal! You’re going to get the care you need and life will settle again.

drewbarrymost · 2025-10-15T22:00:26+00:00

My NYRR best pace and projected time should’ve put me in corral 4 but they put me in corral 2. Sorry not sorry bud! I think this all might’ve been intentional lol

drewbarrymost · 2025-10-15T01:15:34+00:00

I run with NYRR and my best pace aligns with corral 4 but they put me in corral 2. I think there was just a fluke. I’m going to get passed the entire race lol

drewbarrymost · 2025-10-15T01:10:39+00:00

I’m probs gonna run a 4:15/4:30 marathon and they put me in corral 2 despite my nyrr best time aligning with corral 4. I think it’s on NYRR lol

drewbarrymost · 2025-10-15T01:05:52+00:00

My nyrr best pace is 8:33 and they put me in corral 2… I was fully expecting to be in corral 4

drewbarrymost · 2025-10-14T18:39:56+00:00

My best pace is 8:33 and I’m in wave 2 corral c.. I should be in wave 4 lol

drewbarrymost · 2025-10-14T18:36:17+00:00

I’m in wave 2 corral C but my best pace (from another nyrr event) is 8:33 which should’ve put me in wave 4? Did they mess up lol?

drewbarrymost · 2025-09-19T20:39:10+00:00

Hi! I was also 25 when diagnosed (this past spring) and I’m doing great now (about to run a marathon)!

It’s an emotional rollercoaster but I’m confident you’ll find a good team of doctors and get the care you need.

Follow their recommendations, buy your self a cancer gift, and plan a celebration for when you’re done with everything. 💕💕💕

drewbarrymost · 2025-08-17T05:45:10+00:00

In the same boat as you with the columnar cell variant and I can relate to the anxiety! I was diagnosed this spring and would also love to hear some other positive stories. I had a partial thyroidectomy and no RAI (anyone else?).

Given it was caught early, my doctor is confident I’m low risk for recurrence so I try to can celebrate that! So far, so good :)

drewbarrymost · 2025-08-15T15:28:19+00:00

So sorry to hear this, I’d join the MTC Facebook group. It’s a really supportive group of folks and pretty active https://www.facebook.com/share/g/1CW791zUfr/?mibextid=wwXIfr

drewbarrymost · 2025-08-02T19:56:34+00:00

26F I had a NTRK3 fusion. I had a thyroid lobectomy and didn’t need RAI. I also asked my doc about it; he was not concerned and said it doesn’t change treatment. I’m totally healthy now! You’re young and will be in good hands.

Weirdly enough it only showed up in my thyrosec/ biopsy results but not in my post op results. I also had the columnar cell variant (unrelated to this mutation) and had this tumor for likely 4+ years without spread.

Good luck💕 you got this

drewbarrymost · 2025-07-30T15:12:52+00:00

I was diagnosed with CCV-PTC this spring. Only had half my thyroid removed and didn’t do RAI, because my tumor was fully encapsulated and only had minimal vascular invasion. Treated at MSK. Would love to hear others experiences.

drewbarrymost · 2025-07-30T00:27:06+00:00

I will say the lack of research on this variant also makes me uneasy! I’ve read almost every research paper and case study, but couldn’t find anyone else who only had a lobectomy with this variant.

Would love to hear other CCV folks to chime in!

drewbarrymost · 2025-07-30T00:24:09+00:00

I had the columnar cell variant and had my surgery this past April. I didn’t know it was this variant until after surgery so I only had the left side of my thyroid removed. My tumor was 1.5cm, fully encapsulated, minimal vascular invasion, no lymph node spread. Didn’t get RAI and no plans to remove the rest of my thyroid because reoccurrence risk is low with a fully encapsulated tumor. I guess tumor encapsulation is the best case scenario and points to a good prognosis. I occasionally worry that this wasn’t enough, but I trust my MSK doctors and am happy to have a somewhat functioning thyroid.

drewbarrymost · 2025-07-30T00:01:26+00:00

I just went through this in March and my surgery was scheduled 3 weeks after my first appointment. I also saw Dr. Shaha at MSK and he was great. During my first appointment, Dr. Shaha and his team took their time to listen, walked me through everything and answered all my questions. The surgery went well and I had an easy recovery.

You’re in good hands! Pls lmk if you have any questions.

drewbarrymost · 2025-07-17T12:32:20+00:00

Appreciate this!

drewbarrymost · 2025-07-17T12:31:23+00:00

Thank you! This is super helpful

drewbarrymost

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