Proton versus Photon for HPV tonsil cancer

There is another factor that I have to consider, that being my family history of alzhiemers and dementia.

I went back to the mainland about 15 years ago to take care of my mother. I watched her for two years walk around the house at 2 in the morning talking to the ceiling. I don't have a death wish, but I don't want to end up like that, or even worse, in some crappy govt mental health facility laying around waiting on someone to come by and change my diaper.

I've got a call in to my doctor here to discuss that. Just forego any radiation, treat the symptoms as best as can be expected, and me and the wife make the most of whatever time we have left together.

@metsgirl I had nearly identical experience (and on almost exactly the same timeframe.) I’m glad to hear it has been a success for you as well.

@metsgirl You are so correct in your statement ....." Throughout my consultation experience I found that if a hospital did not offer proton treatment then they minimized any potential advantages."

Hello @toleolu and welcome to Connect head and neck. So sorry you need to be here. With the cure rate what it is for HPV associated cancer I would seriously consider the standard treatment, even if it must be photon. Don't give up because of your age. Yes, it is a miserable torture of a treatment with either radiation, but can provide many more years of life free of cancer. I have metastatic SCC, not HPV as it began in my ear canal, and was fortunate enough to have my surgeries at Mayo Clinic, which was a 10 hour drive from Ohio. At Mayo they recommended a Head and Neck oncologist at the University of Michigan who was world renowned and only an hour from home. Proton was not at all widely available 14 years ago and I had 70 Gy of photon plus a targeted EGFR therapy to avoid hearing issues with Cisplatin.
Currently a 44 year old relative has just concluded his proton radiation and chemo for HPV tonsil SCC in Ohio. While he has needed a feeding tube and struggles terribly with swallowing, his pain issues have been minimal. While my treatment was aimed at base of skull under an ear instead of throat, I still had severe oral ulcers on tongue and cheek, loss of taste, and skin burns from my radiation. My Rad oncologist said I would have some short term memory loss due to brain tissue damage in the radiation pathways. At the age of 72, who knows if my minimal memory loss is radiation or age? ( My mother also had dementia.) To do this over again, I would choose Proton radiation if at all possible, but either way, I am alive and cancer free at the moment and have enjoyed graduations, weddings, and grandchildren because of this treatment. Cancer makes you look at life differently and appreciate every day.
The Mayo radiation oncologist definitely answered my question about whether radiation (photon) was the same no matter where I was treated. The radiation oncologist's experience and expertise makes a difference. Do you feel that the local radiation oncologist is the best that is available to you? Second opinions never hurt and you are already demonstrating that you can advocate for your own healthcare. That is so important. Be strong.

@jonesja It is a sad commentary, but that's the business side of medicine creeping in.

@toleolu That's a tough choice for one to make. I went through treatment of SCC on the base of the tongue in 2006 at 49. None of the information I find here today was available to me then. I've had the typical side effects and have learned to live with most of them. The most frustrating one is the brain fog. With a sister who has dementia, I understand your concern. Another sister was treated for tongue cancer in 2023 at 73, and then again in 2025. The second time around she opted for immunotherapy rather than losing her tongue and it had no effect. She passed away a couple of days ago, and it was not easy way to go. We don't know what life will hand us, but opting to skip treatment has real consequences. Live circumstances and age may be a factor, as I've since been able to enjoy 4 grandchildren since then. I hope whatever your choice may be, that it is the one that suits your needs. Good luck!

I’m a 77 yo male who just went through 7 infusions paclotaxel chemo and 70Gy IMRT radiation for a T3N1M0 SCC originating in my right tonsil, involving the soft palate and a lymph node. Four weeks out my NAVDx score was zero and no sign of cancer with a visual probe. PET coming April 15.
Doing ok, mouth and throat pretty well healed now two months out of treatment. I am not totally weaned off the high calorie Boost I depended on and same for the gabapentin that served as a pain relief cushion. Taste is slowest to recover, but otherwise no side effects worth mentioning. No feeding tube, modest loss of weight. Not to say it wasn’t a serious whack that had me hurting and discouraged at times.
I had a choice of proton v photon therapy, but was advised that the diffuse nature of my cancer and involvement with the palate would be more effectively addressed with IMRT. I can’t help but wonder if the ride would have been less rough with the photon option, but I am brought to the comment made here earlier that the most important consideration is the experience and competence of the radiation oncologist with respect to head and neck cancer. Of course, the support of medical oncology, nutrition, and the rest of the team is a close second. I’m very pleased. And happy to lend my experience as encouragement to everyone facing this grim situation.

@tbveblen

Thanks, that's good to hear. I hope and pray you continue to do well.

My biggest problem right now is getting a reasonable idea of how severe these side effects are going to be. I can do 6 months or so of problems. But a year or two of problems and then to have the cancer return doesn't seem like a good plan.

There's also the severe doctor shortage here in Hawaii. I'm two days waiting to hear back from one of my doctors, the radiation doc is on vacation and I can't get through to my chemo doc. I'm concerned that these staffing issues will lead to mistakes being made during treatment that really jack me up.

It's one thing if you're saving a life, it's a whole different thing if you're just prolonging the inevitable.

Again, thanks to all for your comments and experiences. Please keep them coming, they really help.

Even though old, I found this to be a pretty good description, blow by blow, of what to expect.
https://hncrehab.ca/wp-content/uploads/2015/04/What_to_do_When_Receiving_Radiation_Therapy_for_Head_and_Neck_Cancer.pdf

@toleolu Based on what you have shared regarding your diagnosis, it seems that the goal of treatment would be curative. The odds are overwhelmingly in favor of that regardless of the type of radiation you choose. But, yes, an experienced, competent and responsive/supportive care team is extremely important.