Issues with leaving home for Proton radiation -base of tongue HPV-16
I just have been diagnosed (August 2025) with base of tongue HPV-16 Squamous Cell Carcinoma. My cancer oncologist recommends Carboplatin and Taxol (1 time per week/7 weeks) instead of Cisplatin because I already have hearing loss and use hearing aids. My radiation oncologist suggests 70gy radiation (regular-x-ray) over 35 treatment (2 gy per treatment). I can take this standard x-ray treatment in my own hometown and and sleep in my own bed.
If I want PROTON type x-rays, the closest PROTON Center is 2 hours away and I will probably have to stay in a motel or rent a place for 7 weeks for Proton treatment. My wife and I are in our 70s and probably will not be able to drive back and forth 4 hours each day.
Does any one have experience with taking Proton radiation (and Chemo) AND being away from home for the duration of the treatment?
Would Proton treament (with probable less side-effects) be worth being away from home for the treament?
What issues and challanges did you experience? My radiation onclogist says he will give me a referal to the distant Hospital that has Proton therapy if I want to do Proton therapy. My local Hospital does not offer Proton type x-rays, so he can't really counsel me about Proton treatment.
I don't know what to do.
Thank you for your comments and help!
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I had the same issue. no proton center near me. nearest is over 500 mi. away.
I still chose it over staying home.
I rented a condo for 6 weeks. It was very comfortable. Even had an exercise room if I chose to use it and more TV stations than I have a home, plus a new area to explore. Since you are only 2 hours away, you can go home on weekends. Nothing happens on weekends. You can even get a late appointment on Monday and an early one on Friday so you can come down on Monday and go home on Friday.
Won't say it didn't break the bank, but I would choose it all over again over regular radiation.
I was 75 and mine was anal cancer, but I didn't want to live with side effects if I didn't have to. Still got a lot of living to so.
Thank you so much for sharing your experience.
Check to see if the city you would be going to has a place like Hope Lodge where you can stay for free or a nominal charge while receiving treatment.
Hi @rogerlee3,
Radiotherapy has offered up Proton Beam as opposed to the traditional Photon radiation. Although not as commonplace as Photon because of the size of the machine and its initial costs. A few years back there was only about a dozen but looks like when I researched it there are now about 45 of these Proton Radiation machines see link: https://www.beckershospitalreview.com/oncology/45-cancer-centers-with-proton-therapy-in-the-us.html#:~:text=There%20are%20only%2045%20cancer,radiation%20directly%20to%20a%20tumor.
I live in Wisconsin, and they are just completing one at Froedtert & MCW Health and the UW-Carbone Cancer clinics. I am a patient at Froedtert, and they are massive. Matter of fact both of these clinics built them from the foundation for the new buildings where they will be housed. I wish I had one of these back in 2008 when I received my first head and neck cancer (left tonsil) and had 35 rounds (70GY) of the Photon radiation and 3 rounds of Cisplatin (chemo) and no surgery, I would have avoided my second and third cancer which I unfortunately received in 2024.
When you heard your doctor say Proton is used for extremely precise radiation that should have been the key to why so many of us promote Proton radiation.
Did your doctor tell you that Photon radiation is more like a flashlight beam enters body full force, treats/ targets your tumor area, AND continues through the body full force. That exposes the tissues and organs before getting to your tumor, and exposes the radiation to tissues and organ beyond your turmor.
Proton radiation is very precise like a pencil beam hitting the target and can enter body at lower dose, full dose at the location programmed AND does not exit the body stopping at the pre designated site.
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.
God Bless you on your journey.
Having gone thru radiation, 29 treatments, and chemo, 3 infusions for hpv tonsil cancer in 2024, I'd be more concerned about the after effects than 7 weeks in a motel.
I couldn't even take the full 35 radiation sessions due to severe sinus congestion. Toward the end I didn't sleep for week. The mucus was so bad I thought I was going to strangle. To be fair, not everyone experiences that.
I had to have a feeding tube put in prior to treatment. During the next 6 weeks I lost about 40 lbs. I had swallowing therapy and lymphatic massage therapy.
Today, 16 months after treatment I am cancer free but my taste is still altered and my saliva is much reduced. This causes some swallowing problems and requires frequent fluoride treatments to my teeth. Saliva protects them from deterioration.
Proton treatment wasn't available nearby for me but I considered going to Atlanta for two months where it's available. My medical team here put fear into me about delaying the start of my treatment due to potential metastasis so I elected to stay here.
If I had to do it over again, knowing what I know now, I would have elected proton therapy.
Thank you for the great information.
I am starting my 6th week of 7/35 proton radiation treatments and what looks like it will be 6 cisplatin infusions. My radiation oncologist is very happy with my response to treatment and so my medical oncologist is happy with stopping at 6 infusions. I am living in a hotel 300+ miles/an hour flight from home. I specifically chose proton after doing extensive research prompted by my local radiation oncologist informing me that he was going to order a prophylactic feeding tube and that with luck, I might be eating by December. He did not tell me about Proton Treatment. In the course of my research I arranged consultations with Mayo, MDAnderson, Florida Proton in Jacksonville, the Maryland Proton Treatment Center, the New York Proton Center in Manhattan and Memorial Sloan Kettering. Not one advised a prophylactic feeding tube. Yes, it is easier to get nutrition when the road gets rough, but swallowing can be impaired and they now have data that points to delayed swallowing difficulties years later with feeding tubes. I understand they can be necessary but my treatment center has other strategies.
Now, I am in the worst part of treatment. I have had minimal trouble with mouthsores. I do have a very raw throat. I do have terrible mucous. I am consuming only liquids like protein shakes. I am not on opiods. I was put on gabapentin in the 2nd week and will need to be weaned off this following treatment. I have no taste, except bad taste. Truthfully, I, unlike many, have had more issues with tolerating the chemo as time has gone by. I am led to believe that recovery will be quicker under Proton. I'll find out soon. I am glad I am getting Proton and would do it again.
By the way, Medicare pays for 80% of Proton Treatment. I hope this helps.
Sorry. I meant to add that I am undergoing treatment for T2N2M0 HPV/P16 positive tonsillar cancer. Right tonsil with one lymph node affected on each side.
You dont say where your residence is but we live in Hawaii. The closet Proton therapy centers are on the West Coast. We chose to go to Fred Hutchinson Proton Cancer facility in Seattle. You can apply to Fred Hutch for their reduced priced accomodations and they offer a shuttle to their facility for the Proton treatment. If you also need Chemo, that facility is across the street. The Fred Hutch staff and facility are top notch.
The proton radiation had very little side effects: some burns similar to herpes. The chemotherapy was terrible so I quit after 10 days. Finished 30 days of radiation and now show Ned (no evidence of disease) also am now hvp free. It is something my radiologist said would probably happen once the cancer was gone. So far so good. I went to San Diego to the proton center there. There is also one in Loma Linda ca. , slightly older equipment I understand.
I was within one week of starting photon ( got the tattoos and everything) . So glad I was able to change course and do proton. No wait time. Started same time as the other.
At the end I rented a car and drove home ( total of over 10 hrs) with no problems.
Best of luck in your pursuit.