Just diagnosed with scc on base of tongue. HPV16 positive. . Treatment recommendation coming in about a week. Is proton beam as efficacious as traditional radiation and does it dramatically reduce the side affects?

Hi. My wife had surgery for scc of gums and is to start radiation therapy in a couple of weeks. I just joined this site a few days ago and have had no response yet to my request for the experiences of people who have undergone proton radiation, as far as side effects.
That being said, I have done a bit of research on the topic. My impression, and it is only my impression, is that proton and photon (or conventional) radiation have similar effectiveness and that proton therapy has less severe side effects. Certainly, it appears to me that side effects are no worse with protons. The proton radiation oncologist we talked with says the side effects should be less. The conventional radiologist we talked with says there is no difference in side effects. Our medical oncologist says he doesn't have enough experience with patients who have had protons.
Again, it would be nice to hear actual experience of HNC patients who have undergone proton therapy and whether the side effects were as portrayed by their radiation oncologist.
Incidentally, we live in a city with a proton center and a Dr. with considerable experience treating tumors in the head and neck. Also, our insurance (Medicare/BCBS) will pay for protons...many won't.
I hope this helps and some proton patients will share their experience with us.
Good luck and best wishes.

I think one problem with the lack of responses comes from the very nature of the question ... we all have differing degrees of illness, and different treatment proposals, and we can't (alas) clone ourselves and run parallel experiments to find out definitively if one works better than the other, or has fewer side effects. It may very well be that the newer therapy DOES work better and less miserably ... or it may be that the patients who are candidates for it have disease that is more easily targeted, and so would have better outcomes anyway. Plus none of us (that I know of) are doctors in real life, and certainly not oncologists, and guessing would be just plain irresponsible if someone here were a doctor.

Location of cancer plays a big role. Spread of cancer matters. Prior health of patient matters. Support network matters. Your doctors' experience matters. Your doctors' and nurses' ability to communicate to you matter. Honestly, I wouldn't have cared so much WHAT treatments they put me through (several of which I now think might have been incorrect or at least better handled) if they had just communicated better, and also told me more about pain management options, not brushed off concerns about things that didn't heal, and so on. Find a good team, trust your team, and that will be your biggest weapon. And definitely hang out here ... the support system here can't be beat!

(Also remember that a lot of us long-timers that still hang out never had proton or other therapies even offered to us, so we don't have that point of comparison. Treatment options have changed so much! When I went through radiation about five years back, it was still standard protocol to push feeding tubes on patients. I didn't like it, but I accepted it, because I already had dietary issues and we figured I'd end up needing it, which was true. Now it's not used till last resort, apparently. So things change quickly! One reason I stay here ... I keep learning, as well as encouraging.)

Good luck to both of you, and I wish I had more useful information for you both.

In a late response, I did have Proton Radiation in 2015. I already did IMRT twice, IORT Twice during surgery, and then Proton Radiation as my last, and helped cure my cancer that originating in the tonsil with two metasteses in 2009. I had a total of 7 cancers til 2015.

There’s a post by Michael I left information on.