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Hpv positive tonsil cancer

Head & Neck Cancer | Last Active: Aug 28 8:57pm | Replies (14)

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Hello . First off this a very winnable battle. In particular, if this is HPV +16. Google can certainly take you down the rabbit hole with negative outcomes. Your odds are extremely good! Most important have Faith in the Lord and It really will put your mind to easy. I was diagnosed with Stage 4 HPV 16+cancer of Base of tongue and Neck March 2023.
If this is any help here is my story....I am 57. 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 chose Proton vs Photon Radiation as I feel it is much less damaging . In my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is 50% less costly or more. Proton is like a pencil beam hitting the target and stopping. Photon is more like a flashlight beam which travels through the target area. I had to drive an hour to Proton treatment. Alot of people drive much further. 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). I started doing mouth, Neck, tongue and swallowing exercises prior to proton Radiation. If you have a Speech therapist they can help you with this. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. Now the good news... As far as today two years out. I can eat and drink about anything I want. My taste buds are about 95% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 95% . I will continue to have a throat scope and CT scan every 6 months for two years. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. It will become more important once you have completed your treatment to monitor any HPV 16 cancer activity in his system. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will not be a fun 6 months or so. However, You WILL make it and things in a year will be looking up. Some things may not taste the same, you may have some slight neck or throat discomfort and a little less energy but you will be alive. You got this!

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Replies to "Hello . First off this a very winnable battle. In particular, if this is HPV +16...."

Thank you Jones. I think I want to put my attention on how successful the treatment is instead of the side effects. I have small children and one is afraid to leave them behind. I need advices to stay positive for the treatment. Thank you so much for your support