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@jonesja

I had TORS surgery April 2023 to remove base of tongue tumor ( negative margins during surgery). The lymph nodes on one side of Neck were removed and sent off to Pathology. I was considered State 2/ minor Stage 3. I had 30 rounds of Proton Radiation June 2023 to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes on one side of Neck . Also I had NO Chemo. 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. Also, There are tons of Youtube videos on the subject. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. Today 12 months out of radiation treatment. I can eat and drink about anything I wish. However, during Treatment I was eating very soft diet. Think eggs, cottage cheese, Milk, Smoothies, bologna, Boost,Shakes, soups, etc. A meal would take an hour. My taste buds were all but gone, I had mucositis with very low saliva production. Hair loss at the radiation site. Mouth Sores and Neck skin burns from treatment. Loss of stamina. Today one year later I would say I am about 90% back to normal on all. Head and Neck Radiation is a real tough deal. I would go for as little of radiation as possible as it is the gift that keeps on giving long after treatment. Is Proton Radiation an option for you? 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 much cheaper. Also, Proton facilities are far and few in between. In closing you are facing a very winnable battle but make no mistake it is a difficult journey. . I firmly believe if you have faith the Good Lord will get you through anything. Good luck to you.

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Replies to "I had TORS surgery April 2023 to remove base of tongue tumor ( negative margins during..."

Unfortunately I’m in Canada, so proton is not an option unlesss I pay to go to US. Thanks for your reply.