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Squamous cell carcinoma (SCC) P16+

Head & Neck Cancer | Last Active: Apr 4 8:21pm | Replies (110)

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Bruce, Excellent description of your diagnosis. I just went through this exactly. (April 13, 2023) I had TORS surgery to remove base of tongue tumor ( negative margins during surgery). The lymph nodes on one side of Neck were remove and sent off to Pathology. I was considered State 2/ minor Stage 3. ( June 1, 2023) I had 30 rounds of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes on one side of Neck . 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 2.5 months out of radiation treatment. I can eat and drink about anything I wish. However I still have no appetite or taste much at all. During Treatment I was eating very soft diet. Think eggs, cottage cheese, Milk, Smoothies, bologna, Boost,Shakes, soups, etc. My taste buds are about 20% and seem to be coming back some. My mucositis has just about gone away and My saliva production is slowly getting better. My hair has stopped falling out. Beard hair I lost has not returned. Mouth Sores and Neck skin burns healed within weeks of final treatment. My stamina is back to about 80% but Some days only 60%. Head and Neck Radiation is a real tough deal. If I where you I would research Proton VS Photon Radiation and side effects. I 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. In closing you are facing a very winnable battle but make no mistake it is a difficult journey. I see you have faith in God which is why I am typing today. I firmly believe it you have faith the Good Lord will get you through anything..Good luck to you. You can and will make it!

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Replies to "Bruce, Excellent description of your diagnosis. I just went through this exactly. (April 13, 2023) I..."

Thank you for your story. I will check into the Proton vs Photon issue. I'm finding myself wondering if the "cleanup" is necessary or just revenue stream? What if surgery with clear margins gets it all? What happens if there is no Rad and no Chemo? No damage? no burns? no tooth destruction? no dead taste buds? no fatigue? Seriously! What are the risks? 1 in 100? 1 in 1000? What are we talking here? I'm going to need to ask this question of the Doctors.

Sorry for the rant but I can't seem to help it. I need some answers.

Thanks again for sharing your story - I do really appreciate it.