I am curious about how long it took for your dry mouth to significantly improve after going through radiation for your tongue cancer. I finished my radiation 8 months ago and the dry mouth has been horrible. Any advice?

I have been suffering from horrible dry mouth since my radiation ended in August. So much so that I am unable to eat alot of things and I have no appetite at all. Do you suffer from dry mouth during the day and if so do you find that the mouth tape has helped in that regard. I feel very frustrated by this particular side effect and medication is not working at all.

I'm new here. I finished radiation Rx for my tongue cancer August 2nd and, so far and PET scan, I am free of any cancer. HOWEVER, I cannot get riid and no relief at all from dry mouth and loss of appetite. Pre-cancer and a healthy 71 yaar old retired and married male at 180 pounds I can barely get over 145 pounds. Any 'human food' except soft boiled eggs or high caloric blended drinks has no appeal to me at all after the first lor second bite, yuk! Any help or recommendations. Mu oncologist just says be patient plus we tried something called Pilocarpine 5mg times four a day and nuttin. Help!

Nick14

Hello Derek,

Sorry to hear you had a recurrence and woke up from surgery without knowing what was possibly or likely going to be the outcome.

I never would have imagined they would skip over those possibilities when they were discussing it with you before.

I mean mine was tiny, but I told the surgeon I understood things can change when they have you on the table, and I was of the mind to "get it done" whatever it takes, despite a planned very minor surgery in my case.

Now having read your story, Nel's and other's I am trying to catch any possible recurrence super early so the next surgery is equally minor and just another small chunk of tongue.

I would have no idea what to expect for something like what you guys went through, and if my medical team didn't pound it in my head and prep me mentally for what to expect, it would seem kind of like getting hit by a train, getting knocked out and waking back up with half your body not working.

I hope you are adjusting well, living alone and dealing with all of that, THAT I can't imagine. Glad you found some local support, and hopefully you keep expanding that circle of support.

Sorry you have had such a rough go with follow up and post operation care, but that lymphoma clinic and PT sounds like a Godsend, hopefully you can cling on to them and find others like that.

COVID and recovery with all the complications...ugh...I salute you sir! You put up the good fight and made it through.

I hope you readjust and find a good quality of life, Nels talks about how we was able to gradually reclaim a pretty active life and thrive, and can figure out how to remain vigilant, without letting the worry take away from living your best life each day.

Take care of yourself, and I wish you the best.

R/
CQ

Hello M,

I am so sorry to hear of your recent cancer diagnosis and surgery. My SCC was stage 4 on my tongue and in one node. I chose to do radiation and no chemo as recommended by my oncologist. I was told my chances of it coming back dropped in half if I did radiation. I did some research and found a few articles that backed this up. Unfortunately, I do not recall how/where I found them, Mayo Clinic website? or this website or ? or National Cancer Institute?

Sounds like you are aware the side effects from radiation are significant. They are getting better and supposedly proton therapy has less side effects.

I received standard radiation treatment and now nearly five years out have had lots of root canals, starting a bridge install tonight, saliva is enough to eat crackers again, food mostly tastes normal..in other words, I have most of my life back. I feel better than ever, to be honest, but I think that is just because I am more grateful for every day now, and my faith is on full blast these last five years.

Wish I had more info for you on this. Tough decision. I do know of one patient that chose not to but the oncologist was not pushing it and they were stage 1.

Hopefully others will jump in here.

Stay safe and keep the faith,
Nels

Hello, First time here on site. Lichen Planus turned south (cancerous) for me on my tongue. Surgery removed tumor and 20% of left side of tongue in early February 2025; concurrently 30 lymph nodes removed but tested negative for cancer. Still given "Stage III" due to the way the "cancer was directing itself." Recommendation is for "standard" 6-weeks of bilateral radiation to both sides of neck and cheek to tongue.

My fear is that radiation will trigger LP which in turn will go south again.

Do any of us with tongue cancer every forego radiation or do we simply follow oncologist/radiologist advice and live with the related long-term side affects that aren't nice, but hope we're on the "right side" of the 50% chance that it won't reoccur?

Where are the clinical studies that follow patients who opt not to go with radiation treatments?

Thank you for any insights.

Yes my 1st biopsy revealed moderate epthelial dysplasia

(you can search for my post on that and see the verbiage the pathologist used describing the dysplasia in detail or click my username and navigate to all my posts and see it).

2nd Biopsy revealed micro invasive oral squamous cell carcinoma and more moderate dysplasia. Margins not big.

Partial (very partial) glossectomy and 3rd biopsy of excised larger piece of tongue found no further cancer but more low grade dysplasia.

Hi Derek,

Welcome to OCF forum and thank you for reaching out. I am so sorry to hear of your 2x cancer experience. About 5 years ago, I went through similar procedure to your recent one. And, even though my team prepared me for waking up with nasal feeding tube, neck dissection, flap surgery, arm and leg transplants, etc, it was still shocking. Amazing how long it took just to get out of bed and go for a short walk around the hallways. And, I had a family to help me once I got home. I recommend a book that may help you - Anticancer by David Servan-Schreiber.

I am curious, your first time through, did you get any follow up treatment such as radiation or chemo? How about this time?

Stay safe and keep the faith,
Nels

Hi, I am experiencing an issue at the tip of tongue and flap where there is a gap…the other adjoining areas have grown together albeit with some scarring yet the tongue and flap are basically one except at the tip.
Any advice on this is appreciated.
Kind regards
D

Hi, I’m Derek and feeling fortunate to have joined this community today. Originally diagnosed with scc and had surgery in 2019 partial glossectomy and neck dissection. Reccurant scc diagnosed in June 2024 and I’m struggling mentally and physically from scc returning a 2nd time and the surgeries I had in Aug 2024. I was very much overwhelmed at the thought of having c again and due to the location and size of tumor the team was unsure what methodology would be used during surgery meaning would a partial glossectomy be adequate or would a flap be required. I definitely was not ready to awake from surgery with forearm flap reconstruction, a tracheotomy, wound vac on arm, skin graft on leg, ng tube. Perhaps I did not research or ask enough questions regardless it was overwhelming. Then 1 day after surgery I got Covid and then my situation was even more challenging. Unfortunately I couldn’t take anything by mouth and was scheduled for a g-tube surgery. After leaving the hospital recovery was very difficult as I live alone and was not equipped for the struggles that were to come. Very frustrating experience with medical team and referrals for post op care. Ultimately I found local PT and lymphoma clinic that were awesome! Did not go to SP or any other specialist. I now have a very real fear of going to hospital even for routine follow up. As much as I try to stay positive I struggle with the idea of when c is going to return and not if…
Kind regards-
D

Hi Mr Fox

Hope you are well. Any update to your situation as I am experiencing similar symptoms approximately 7 months after surgery.

Thank you