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Newly diagnosed and scared

Head & Neck Cancer | Last Active: 13 hours ago | Replies (21)

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@jonesja

Hello . I was diagnosed with HPV 16+cancer of base of tongue and Neck March 2023. Stage 4. The good news is you are correct it is very treatable with high success rates! With Stage 1 your Doctors may only suggest surgery to remove the cancer and that is all. Or they may elect radiation only or a combo with Chemo. Trust in your team and I am sure they will help guide you to the correct decision. If this is any help here is my story....I am 58. 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 18 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 3 months for two years. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will get better for you in the next 6 months or so. Some things may not taste the same, you may have some slight neck or throat discomfort. I take the time now to thank God every morning when I get up. You got this. Have Faith

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

Thank you so much for sharing your story. Because of where the tumor is, they believe chemo/radiation will be most effective and (I suppose) more humane. I just turned 60 yesterday, and hearing from someone close to my age who has beat this gives me hope.