Proton versus photon radiation

Hi @jjansencg . I guess none of us can personally compare the two since we only have our own experiences, but a year out from my treatment I'm very glad I traveled the distance to Mayo to get the proton treatments. (In Rochester they had free housing for cancer patients, which also helped ease the burden). I think the data is pretty strong in favor of proton therapy, which is why you are seeing more and more spring up across the country despite the great investment costs. Blessings on your journey.
-Mark

Hello @jjansencg. I think there may be a small error in your question as usually photon is available everywhere and proton is the hard one to find. I only had photon 13 years ago and lots of side effects there. My understanding is that proton can be more focused so that less normal tissue is damaged in the process. I would look into it if I had the option. Photon is five days a week for weeks, mine was 7, but I don't know the standard for proton. Could be lots of travel. We drove an hour each way for my radiation at the University of Michigan because the radiation oncologist there was said to be one of the best. Perhaps someone who had proton radiation will chime in here to help you decide.
As for the time frame on healing, I agree with you that is very optimistic. I think 6-12 months post radiation with gradual improvement is realistic. I had a partial parotidectomy and still have dry mouth issues years later. I was told the same thing about not having a dry mouth but I feel that everyone responds to radiation differently and it does wipe out normal tissue, like salivary glands. Mine was focused on base of skull below my ear due to cancer of the ear canal which was surgically removed. 70 Gray of photon radiation keeps showing its face with more hearing loss and continued dry mouth and now neck fibrosis. It is the gift that keeps on giving. But if I would be dead without it then it is worth all the side effects. Check out proton if you can.

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!

Proton was not readily available when I went through treatment. Photon resulted in several peripheral damage issues such as thyroid damage, memory loss, osteoradionecrosis of the mandible to name a few. From what I have learned over the years, Proton is the better radiotherapy.
That being said, in cases where the cancer has spread outside the original center or tumor, Photon can be a better option due to the wider area of result. Every case is unique. Let both your knowledge and the oncologist's wisdom be the guide. Good healing.

I have been suffering horribly for 15 years after proton therapy for parotid cancer. But the good news is that is only affects one side. No matter how horrible the results, it could be worse if all of your face and neck were zapped. Many have good experiences and heal for the most part with few side effects. At least immunotherapy is now available, not something 15 years ago. I would NEVER go through radiation of any kind if I were again diagnosed with cancer again. Your body, your choice.

Traveled to get proton and don't regret it at all.

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.