Your experiences with radiation therapy to tongue

@healthydeb
Welcome!
I had 33 rounds of agressive radiation for tongue tumour. I'm 3 years out NED! I can say post tx was such a raw deal. For 19m I felt I was on my death bed. Every story is so unique but we can all come together and share a common bond. Thinking of you as your journey begins.

I'm 20 years out after 42 rounds of radiation, chemo, and surgery. Radiation is the gift that keeps on giving. Everyone seems to have a different experience, but no one enjoys the present. It can get better, so I would ask what my chances of surviving are should I forego treatment. In my case, I wouldn't be here if I hadn't. We are all dealing with a deadly disease, so I hope your choice is clear. Take care.

@zenren14
My goodness that is life altering for sure. I will have a follow up appointment in 2 weeks with my surgeon. He will have met with the Tumor Board so all the experts will weigh in. I appreciate you taking the time to reply. I hope you feel better every day!

I had 35 rounds for radiation ten forchemo for tongue and lymph nodes. Six surgery’s to remove dead bone from my jaw. I have osteoradionecrosis. I also have dry mouth and some fibrosis in my neck. It’s been over three years. Cancer had spread into my lungs. Had the nodules removed on both sides. On July 3rd will be two years no evidence of disease. I rang the radiation bell on April 25 2023. I’m glad to be alive and thankful to All my doctors and nurses who helped along the way. Mayo saved my life.
I finally am at a time where I have no exposed bone in my mouth so I can eat normally now. Several surgery’s later and with some meds it’s all healed gums.
I control dry mouth with xylimelts at night and sip water all day long. Constantly keep water in the car and take it with me everywhere I go. Coffee in the morning. I ate a tough steak last night so I’m coping with my eating difficulty.
I stretch my neck in the morning and that does the trick for now. I know that can get worse. I’m happy and so lucky to be alive!!! I have had a tough go of it but am at a good place now!!

@oliverpuppy for years I carried a water bottle with me, never wanting to be more than a moment away from the relief of water. Today, I can go for an hour or more. Things change, sometimes for the better. You have a great attitude for coping with your challenges. I wish you well.

@oliverpuppy You are a survivor! All the interventions are worth it and keeping a hopeful and positive outlook is a key to reaching a healthier outcome. Good luck to you and thank you for sharing your story.

Thank you. I’m just glad to be alive!!

@oliverpuppy I think people sometimes forget they just stared death in the face and survived it. Gratitude goes a long way in helping with recovery. I think you have the right attitude. Since my treatment, I have gotten to enjoy 4-grandkids and a world of beauty. Not everyone is so lucky. Be well.

Every day is a gift and there are no “bad” days in retirement😀

Hi there. IMHO I would look for other alternatives. Radiation is destructive. I finished 6 weeks in August 2025 foe aggressive SCC of the tongue. I now suffer with severe tongue. lymphdema and with rehab and PT it is not getting better. If I knew then what I know now I would avoid Radiation at all costs. There's gotta besolutions. Better remedies and solutions. Best of luck.