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.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery