Proton versus Photon for HPV tonsil cancer

Strongly recommend proton if doctors think it’s appropriate and you can get it approved with insurance. I traveled to Mayo for proton, renting a small home with my dog for six weeks.

It offers significant benefits versus photon. re: side effects as particle beams are narrowly focused on target tissues, leading to more efficient use of ionizing radiation, so modestly lower overall dosing.

ChatGPT can explain the differences and benefits in great detail.

P.S. You might also ask if you qualify for the DART 2.0 trial, which could further reduce side effects while maintaining efficacy.

@jfh1970
P.S. I’m almost six months out from completion of treatment and am heading to Oahu and Hawaii with my kids in a week. 🙂 Taste has recovered enough to enjoy all foods again, and salivary glands were largely spared. Was HPV16+ T2N1M0 with large left lymph node masses. Zero signs of cancer with PET and NavDx DNA marker testing.

i had 3 teeth pulled for photron therapy. I do not believe teeth pulling is different based on proton therapy. Bad tooth needs to be extracted.

I vote for Proton all the way. Yes people travel a long way for it. I had no teeth pulled prior. To but you at ease your 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 59. 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 2.5 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 that 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 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. God speed!

When I went through my experience 2 years and nine months ago the backlog for proton put my treatment out to far and Drs recommended not to wait so I had photon. I did have IMRT (intensity modulated radiation therapy) and it is very accurately mapped out so the needed areas get the majority of the treatment. Had full treatment of 69.9 grays (more important number than number of sessions) and five chemotherapy treatments. All went smoothly and doing great! I believe the dental issues will be the same regardless of radiation type. Very important to address those dental issues and check into hyperbaric therapy if dental work is needed post treatment. God Speed we are all here for you!

@jonesja everyone is different, and it sounds like you've had a great outcome. Most of the conversations I read here involve things that weren't even discussed 20 years ago when I went through the same thing. They didn't even bother to determine the cause of the cancer. I'm glad things have improved today and hope everyone enjoys the same outcome as you.

Very important to address those dental issues and check into Hyperbaric Oxygen Therapy (HBOT) if dental work is needed as from what I've gathered on various posts in the last year was you would need to this therapy before and after radiation treatment to help avoid major dental issues later.

Thanks for all the replies.

Going to MD Anderson proved beyond my budget. There is another Proton treatment facility in Oklahoma City that may be more viable as I have family there and can stay with them during treatment.

I'm being told by the doctors here that the side effects between the two therapies are comparable with Proton being slightly less severe. Plus as was pointed out by another post, the IMRT radiation, which they use at my hospital, is much better at missing healthy tissue than the older tech.

Still trying to figure things out. 71 years old, never been sick, never needed a doctor, and now this. Oh well, stuff happens.

Thanks again.

I was diagnosed with HPV 16 positive tonsil cancer T2N2M0 in May 2025. I was going to proceed with the photon/cisplatin standard of care: 35 radiation treatments 70 gy and 7 cisplatin...until I found out about proton radiation. Despite intensive questioning my local radiation oncologist did not explain this was an option...until I discovered it on my own.

I decided that I was willing to travel for proton radiation. I consulted with 6 cancer centers including MD Anderson and MSK. I ultimately decided on Baltimore, MD. I completed treatment in the beginning of September 2025. I experienced mild to moderate mucositis, xerostomia, lost taste and lost 12 pounds but did not need a feeding tube. I did not require opiods. I used only gabapentin for pain and was off that 30 days after the end of treatment. I just had my six month visit. No sign of cancer. Taste is about 60% and improving. Saliva is improving. My radiation oncologist says both my oral cavity and throat are healed. He specifically stated that he thought that if I saw an ENT that they probably would not be able to tell that I had radiation. So my experience was a good one. I did not have to travel the distance you are facing, however, and I had no insurance issues. Medicare covers 80% of proton treatment with no approval necessary. My supplemental plan paid the balance. Throughout my consultation experience I found that if a hospital did not offer proton treatment then they minimized any potential advantages. I firmly believe that what matters most is that your radiation oncologist have considerable experience in radiating head and neck cancer.

Best of luck to you for a smooth treatment and the best outcome.

@metsgirl

Thanks that's very helpful.