Meet others living with Head & Neck Cancer: Introduce yourself

Hello, @sepdvm, and thank you for your kind reply. The treatment I had after surgery back in 2021 was radioactive iodine, and that has brought with it (I had two separate RAI treatments, 18 months apart) the dry mouth, gum inflammation and salivary issues that come with that treatment. So I well know the drill about that, and I see my dentist every four months for special cleanings and I'll see him again prior to radiation. Unfortunately, his wife has thyroid cancer, so he knows how to treat his patients with thyroid or mouth cancers. I am meticulous about my dental/oral health, so I suppose that helps a great deal. My radiation oncologist tells me that my jaw and mouth won't be implicted through the radiation treatment-- but I am double and triple checking, etc. Yes, at UCLA, there is an entire team of different specialist weighing in and since mine is a rare form of the disease, my case is trotted out at every tumor board and conference going. 🙂 The radiation team is clear about potential long-term side effects, which seem a bit daunting, but as you say-- living with side effects is usually preferable to the alternative. I send you peace and well wishes.

Hello @ruehoudon. I had radiation plus a targeted therapy but aimed at my ear not throat so I missed a lot of the swallowing issues that others have. Getting to your dentist immediately is important and you may have to request a fluoride toothpaste and treatment if he/she is not on the ball with radiation issues long term. I had to switch dentists midstream to find proper care. Oral ulcers and food not tasting right made for tough eating. Drinking calories was easier. I made it without a feeding tube but lost weight and wonder if that was the best choice. Skin irritation left me with some light scarring and of course hearing was affected by radiation as well as surgery. Others benefit from speech therapists for swallowing issues. Oral lidocaine gel was a life saver for temporary pain control for eating. There is a nice mixture your radiation team can prescribe called Magic Mouthwash which also helps with discomfort.
Never hesitate to request a second opinion, as you are your best advocate for medical care. It sounds like you are at a highly ranked facility already. They may already have multiple doctors making case decisions. Radiation is not a fun experience, but you will get through it and the slow healing afterward. I suspect we all have residual changes thanks to our radiation, but life with changes is still the better option. Good luck to you.

Thank you for your kind and thorough reply. Sounds as if you've gone through very difficult treatment; I'm sorry for that and hope you are on the other side of most of it. I am not having chemo and my radiation oncologist tells me that my mouth isn't implicated in the upcoming treaatment. But I've asked for triple confirmation of this as I've no wish to suffer any further gum or mouth side effects (mine are mild, but as a result of two rounds of radioacive iodine treatment) at this stage of my life. Wishing you a smooth journey. P

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

Thank you so much for your kind reply. Yes, it’s been a lot, but I have felt oddly well through everything. Hoping for best case regarding potential side effects.

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, 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.

In Feb 2006 - I was diagnosed w/ nasopharyngeal carcinoma Stage IV, and commenced treatment in Apr 2006 - with 35 rounds of radiation, together with 4 rounds of chemo (body not able to handle all 6).
In mid 2020 - I find that I had speech issues - with slurring and not able to form words, and at same time - I had difficulty in swallowing. It was then that I was diagnosed with with severe neck fibrosis, with dysphagia and dysarthria -- late effects of radiation.
I have been doing my best to do dysphagia exercises, and going for physiotherapy treatments - in the hope that this will avoid me having to have a feeding tube for intake of nutrition (as advised by my oncologist he has cancer survivors who have feeding tube inserted).
I was not aware of Botox and/or steroid injections - but this is something I would like to look into.

I was diagnosed in 2021 with nasalpharangeal cancer and in 2024 with tongue cancer. I had chemo and radiation in 2021 and a glossectomy and radiation in 2024. Now I have developed rather severe fibrosis of my neck and chest ,it's becoming difficult to swallow. Has anyone had Botox injections and found that to help with the stiffness?

Hello @johon735 This is the place for answers or advice from patients who have been or are going through this head and neck cancer experience. All you need to do is ask a question or start your own discussion with a question or thoughts. Welcome.