Meet others living with Head & Neck Cancer: Introduce yourself

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 @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.

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.

Hi Everyone,

My name is Jay and I have been facing possible HPV+ OPSCC. I have had ultrasound, CT scan with contrast and a Fine Needle Biopsy with no cancer detected yet. I have asymmetrical tonsils, and a very large cystic lymph node at C2. My ENT (who by happenstance is also a surgical oncologist, trained for TORS) is treating this as if I have HPV+ just at a very early stage. I am scheduled for a modified radical neck dissection on July 1, and after I recover a PET scan and then likely TORS. My ENT feels strongly that this is very early and quite possibly could be treated with just surgery.

Needless to say I am little worried. I have to have the neck dissection and cancer found before the insurance will cover the PET scan. I would much rather be facing a single surgery for everything but I am trying to stay positive that mine seems to be very early.

Hi Jay @bentleyoakguy and welcome to our head and neck group.
Your ENT is also a surgical oncologist and wants to cut you open. Have you heard the term "digging for gold?" How convenient, for him/her. For you? well, that's where we are. I for one would seek a second opinion elsewhere without help from your current health care group. At the very least, there are private cancer screening companies who often run PET or similar sans for cash or credit card. It may be worth a call.
A CT scan usually is accurate in detecting a tumor. It certainly was for me when all else failed.
I'm not a doctor, just a patient. But I have learned one thing over the years, take your healthcare into your own hands. If this all goes sideways with your current team, they will just shrug shoulders and move on. You on the other hand may be out $ or worse, a proper diagnosis. If it's not sitting right with you, as I suspect is the situation, hop on a different bus.

Hi @bentleyoakguy,

Three things during my cancer journey that helped me keep track of everything from diagnosis/treatment options to my medications or pain meds.
One, I bought a Philips VoiceTracer DVT1160 ($42 on Amazon) to record every appointment with every person I was in contact with so I could always go back and play so nothing is missed. Never had any of my doctors or others which I have seen many over the years not allow it and some actually were glad so important information is not missed. I have done this in 2008 with my first tonsil cancer caused from HPV and more recently this year 2024 for my tongue cancer which was most likely caused from my radiation treatment in 08’.
Two, go to a cancer center and if possible one that specializes in head & neck.
Three, get a second opinion.

Best of luck with the journey and hope this helps ease some of the frustration.

Jay I second what William said and get a second opinion. My case was similar to yours. No cancer detected with needle biopsy by ENT. MRI was also inconclusive. Then when the ENT did surgery to remove what was thought to be a benign cyst and got eyes on it, he knew by looking at it that it was cancer and pathology confirmed. I was immediately referred to a cancer center and off to the races with PET, neck dissection and TORS followed by chemo and radiation because the original lymph node showed the cancer may have extended outside of it. On one hand it is great that it may have been caught very early but neck dissection and TORS is no joke so please get a second opinion from a cancer center if you can. My ENT was great but my surgeon was better - he actually pioneered robotic surgery for head and neck cancer - and my ENT sent me to him.