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@ruehoudon

Hello, everyone. I'm in Los Angeles, female, 6os, being treated at UCLA. Diagnosed in Fall 2021 with aggressive PDTC with TERT+ and NRAS mutations. Surgery in October 2021 to remove 8cm mass resting against windpipe and a complete thyroidectomy, followed by RAI treatment. Surveillance through PET CT and neck U/S every 3-6 months. TG levels remained below 3 for the better part of 18 months and then began to rise, pretty much doubling every 3 months. A second course of RAI was given in December 2023-- had zero effect apart from the unfortunate side effects (extremly dry mouth, dry eyes-- both being handled/treated). In January 2025, neck U/S revealead two small masses in neck area and a suspicious lymph node. Another whole-body PET CT revealed no metastasis and a neck U/S/ and surgery scheduled for March 2025. In the two months between first and second neck U/S, two more small masses discovered by surgeon. Surgery completed and another round of genetic testing (more sophisticated than in Summer 2021) revealed no changes in mutuations, no futher mutuations implicating possible treatment-- and no effective targeted treatment or immunotherapy available at this time. Had another PET CT early this month that, thankfully, did not yet reveal metastatis. However, TG levels dropped immediately following the recent surgery and then rose 20 points in six weeks (not at 91), leading at least one of the doctors to opine that there is microscopic disease lurking somewhere that has not yet revealed itself. The recommendation was to do a course of adjuvant radiation therapy to try to stave off future recurrences in the neck, at least, while I still can do so-- another PET CT in six months might reveal disease elsewhere and then radiation is off the table without any known to be effective systemic treatment available. About to undergo TrueBeam VMAT IMRT, 33 treatments to the positive margins, operative bed, and bilateral nodal through IV. The doctors and PA's have prepared me pretty well for this-- and I am not undergoing chemo or any systemic treatment, just radiation to the neck. Appreciate hearing about the worst side effect anyone has suffered from similar adjuvant course of IMRT w/o chemo, etc. Thank you, and wishing you all the smoothest possible navigation through your own journeys.

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Replies to "Hello, everyone. I'm in Los Angeles, female, 6os, being treated at UCLA. Diagnosed in Fall 2021..."

Hi @ruehoudon and welcome to the Head and Neck cancer group here on Connect. After reading all you have been through in the past four plus years, my first thought is "Have you considered going somewhere else for treatment?" On the other hand, you had a very large mass initially, which doesn't bode well for an easy go.
The PET scans will of course be a bit misleading because scar tissue can appear as cancer tissue. Your TG numbers are not usually misleading though. But I'm not a doctor, just a patient. And what you have going on is above my pay grade so I will defer to someone who has been down a more similar road. Likely someone will pop in soon enough. Just wanted you to know this post is being seen and you are not ignored. Courage and hope for a good outcome soonest.

Hello and sorry about your situation.
In the words of my senior oncologist, I had way too much cancer for any surgery and I needed to be hit as hard as I could with old school chemo and radiation because he had one chance to kill it or my prognosis would not be good.
With all that said I can only attest for radiation along with chemo.
One thing for certain is that you need a complete oral examination from an oral surgeon. Any teeth that are within the radiation impact area that may be at risk(crowns, filled, decay etc) must be extracted and 21 days of healing prior to any radiation. After radiation treatment you will need Hyperbaric Oxygen treatments for 30 days prior to a tooth extraction or filling and 30 days after…. I had my wisdom teeth and 3 molars extracted prior to radiation!
As far as radiation, everyone can respond differently so it’s hard to say how it will affect you. All we can say is what it did to us.
As for me, chronic migraine 24/7, tight neck, tight jaw, dry mouth, difficulty swallowing food and sometimes liquid, cough, hearing loss and tinnitus (most likely from Cisplatin), speech impairment, fluoride treatments/prescription toothpaste and more.

Wishing you the best,
MOJO