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Squamous cell carcinoma (SCC) P16+
Head & Neck Cancer | Last Active: Aug 26 4:24pm | Replies (119)Comment receiving replies
Hello,
Just starting this journey. Felt something in my throat a few months ago, seemed to get worse and effect swallowing. So, I went to GP end of July, referred to ENT. Got scoped & neck CT within a week & referred to UF Head & neck surgeon. Luckily for me things have happened fast since I had initial Drs appointment. Biopsy of additional neck lump result Squamous cell carcinoma (P- 63, P- 40 and P-16 positive). Have appointment with Oncology Dr plus Radiation Oncology Dr this week. I have done a bunch of research (reason for me being on this thread). So feel pretty informed about what the next month or 2 will be like for me... I am also in a de-escalated radiation and chemotherapy study. I'm all for anything that may reduce treatment side-effects/improve quality of life.
My question is about Proton therapy. I will be bringing it up in my consultation appointments this week, but just looking for feedback. I also will probably post something in the thread I saw specifically on Proton therapy.
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I vote for De-Escalation and Proton Radiation all the way. The best way I can explain is to tell my story..
I was diagnosed with HPV 16+cancer of base of tongue March 2023. I am 58. I had TORS surgery to remove tumor and lymph nodes through right neck dissection. 2 of which had cancer. Radiation followed about 45 days later. 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 farther. I tried to get De-escalated amount but doctor really pushed the full 30 rounds. I am currently 2 years post 30 rounds ( tried to get De-escalated program but could not) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I opted out of 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 your appetite and everything has no taste. However as far as today. I can eat and drink about anything I want. My taste buds are about 95% back, My throat mucositis has almost gone away, Saliva production is about 90% back, My stamina is back to about 90% . I had a throat scope and CT scan every 3 months for the first two years. I have now gone to every 6 months. 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 your system. I continue to be cancer free as of today. Trust in your faith as It will help you on your journey. God speed!