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Navigating my way through throat cancer

Head & Neck Cancer | Last Active: Mar 31 11:06am | Replies (49)

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Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023. The Good news is HPV 16 is a very treatable cancer. I am sure the earlier you start treatment the better. Trust me I had not visited a Doctor in 20 years and I found it hard to trust them but a good Oncology Doctor that treats alot of HPV cancer should be able to help guide you to the correct and proper care.
If this is any help here is my story....I am 59. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I did not have any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 30 months out of treatment I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . I will continue to have a throat scope and CT scan every 6 months for another year and I think then it will go to once a year. So far no evidence of cancer remains.
Make no mistake this will get better for you in the next 6 months or so. To answer your question I drove myself to all 30 treatments. I did manage to keep working. I would say around treatment 20 you can feel it slowing you down and by 30 your are ready to be done for sure. I take the time now to thank God every morning when I get up. You got this. Trust in your Faith

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Replies to "Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023. The Good..."

@jonesja
My journey was very similar to (jonesja). HPV tongue & lymph nodes, had surgery in September 2025 and radiation Oct-Dec 2025 (33 treatments). I made it through surgery/radiation quite well and except for a short time was always eating solid food. Had feeding tube installed as a precaution but never used it and had it removed three weeks after radiation ended.
Ten weeks post radiation now and I have no diet restrictions but still experiencing dry mouth problems primarily at night. Sleep has been an issue but is improving, stamina and energy levels are definitely getting better especially the last few weeks.