Proton versus photon radiation

I vote for Proton all the way. It sounds like you are being positive and you should be as the odds are excellent on a great outcome. The best way I can explain is to tell my story. See below...
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 am currently 2 years post 30 rounds 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. I would look into a Speech therapist they can help with this. It was a struggle to eat during radiation and I FORCED myself. I did manage to stay off a feeding tube but I lost about 20 pounds. 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 95% back, My stamina is back to about 95% . I had a throat scope and CT scan every 3 months and now It is every 6 months. I also have a NavDx test done. You should also ask about the NavDx Blood test for HPV 16. It will become more important once he has completed his treatment to monitor any HPV 16 cancer activity in his system. I continue to be cancer free as of today. Trust in your faith. God speed!

@jonesja Hi Jone, I commend you on your hard-work efforts. I can relate so well to your post. It's like a breath of fresh air. I'll share an itty-bit of myself. I wear the foreign object in my stoma. I've gotten used to it since I've had it for only 2.5 years. I was diagnosed in March 2023 SCC Tongue Stage 4B & August 2023 left neck lymph node. The beast met me in my 54th year. Honestly, I take everything in stride and moderation and mindfulness. Somewhat living my best life ever!

Thanks everyone. I think proton is the way we are going to go. He is on Medicare with Part F supplement that he was able to get the last year it was available. It has been great so far and the nurse navigator at the hospital doesn't seem to expect there will be an issue on coverage, but we will see.

To the person who noted the Navdx test, it is already on my list!

We met with the oncologist today. They currently have him starting cemiplimab after radiation. I questioned why it wouldn't be Keytruda. His answer was that the trial noted good results from cemiplimab and it was the standard. I asked him if he always followed the standard or if he ever went outside the box. His answer was he was an in the box person.

Needless to say I was underwhelmed. He is supposed to be a good oncologist that specializes in head and neck cancers, but to me he did not have good answers to a lot of my questions. I'm the big researcher in our family so I go in fully armed with questions and supporting documention. I am happy to change my thoughts, but I expect them to be able to back up their answers.

I also asked if there were any studies doing immunotherapy only after surgery and saving radiation in case there was a recurrence. He had no answer and said he didn't know if there were any studies on this. I said as an oncologist, I would think this wouldn't be an uncommon question. then asked if he could do some research to check on this and get back to us. He said ok, but seemed a little put out. Then when he left, he shook hands with my husband and ignored me as he left.

Told my husband it was his decision, but if it was me (and it was 15 years ago with breast cancer), I would be interviewing other oncologists.

Thanks for your advice all. We had met with the folks at Community Hospital in Indianapolis. They are in the MD Anderson affiliation. The surgeon had a great reputation but was old school and didnt do immediate reconstruction. The radiologist was awesome but Indiana doesn't do proton therapy. Closest is Cincinnati. He actually strongly recommended that we check it out. Said it was much better especially for the facial area where a lot of things are located. He sent the referral over. So Cincinnati Health has all our info now and we are working on getting all that approved. The oncologist, while he seemed knowledgeable, was a little underwhelming. He didn't really answer all our questions well. Just kept referring to what studies said. I asked if he was a think outside the box kind of person and he said he "stayed more in the box," That didn't do much for me.

However my oncologist recommended some people when I met with her at my annual checkup (Breast caner 14 years ago). She is through IU Hospital, a major teaching hospital.

We met with the surgeon yesterday, mainly for a second opinion. He recommended the same surgery, but he is trained in microvascular surgery and said because his tumor is fairly large he recommended immediate reconstruction with a flap graph. The community doc wasn't doing that.

So Monday's surgery has been cancelled. The new surgeon had one opening on November 25th, and Joe was willing to wait the 2.5 weeks. We are also meeting with a new oncologist. We mentioned that to the new surgeon who said we will love the new guy.

So....in 24 hours, we cancelled a surgery that was on Monday, changed surgeons, getting a different oncologist and waiting on the radiation finalization. It's been a day