My wife is now 3 1/2 week post op for gingival squamous cell carcinoma, T3N0M0. The margins were clear, but "close" and the tumor was identified as being aggressive. The Tumor Board unanimously recommended radiation. We are trying to decide between conventional radiation and proton radiation, leaning to the latter in hope of lesser side effects.

Would the thread on treatment be the best place for us to seek the experience of others who may have been through proton treatment?

I am an 8 year survivor of prostate cancer and found great solace in this type forum during my recovery and am so glad to have found you all to help us along our journey.

Welcome to OCF, Michael! Im sorry you have a need for our help with your wife's recent diagnosis of oral cancer (OC). We will try to help with info and support.

Please understand, not every member will go thru the same treatments with OC including so many different tumor locations. As a group of OC patients/survivors and caregivers, we may not always have in depth info about all topics relating to OC. Off the top of my head, Im pretty sure PaulB is someone who has been thru Proton therapy as well as IMRT. As far as which section to post in, I would instead try doing a search and going thru the results of numerous threads on Proton therapy. On the main OCF site theres tons of info about a wide variety of subjects. Ive included a link to our main OCF site, the Treatment section of the Understanding tab should have the most info to help with your questions.

Main OCF Site, Understanding section, Treatments

OCF is not like most other health related websites. We do not allow advertising, spam and never sell our members private info to the unscrupulous companies trying to sell false cures or other unneeded items. Our public forum is monitored 24/7/365, every single day to protect our members safe from those who prey on cancer patients. At OCF, we provide only correct, up to date info which has earned the right to carry the Health on the Net endorsement badge. Meeting their strict criteria makes OCF a much better choice over unmonitored sites where frequently bad advice is passed around which could end up hurting someone instead of helping them. Im sure you will find many things here to help you and your wife get thru whatever path you are taking.

Best wishes!

Thanks, Christine. The 24/7 monitoring and exclusion of advertising, etc. is something that is very attractive about the website.

I will do the searches as you suggest. Also, is there a way I can personally contact Paul B through the site?

BTW, I looked through the mainline site information in the treatment section and didn't find any info about protons...only IMRT.

You can send a private message (PM) by tapping on your screen name in the top right hand corner after you have signed in. There a drop-down menu, choose private message. Make sure you address your PM to PaulB, and not Paul B.

Michael, Im very sorry Proton radiation was not at this time part of the treatments section! As new medications, treatments, etc emerge the main OCF site is an evolving work in progress.

When I did a quick search on the OCF, forum plenty of posts popped up that contain proton info. Unfortunately, most of the proton posts are like yours... they're seeking additional info.

Im pretty sure PaulB has done proton. Pauls been thru far more than almost anyone on here with his numerous recurrences. Paul is very well-read about many OC topics and has info only someone who experienced it would have. He also does in depth research from reputable sites so his info is always very knowledgeable. PaulB does check in from time to time if you decide to send him a private message (PM).

Hope you find the info you need to make an informed decision.

PS... Another idea would be to check with your wife's doc and ask them if they are aware of any published study results having anything to do with proton vs IMRT.

Hi all!

I’m sorry I haven’t been on in a while due to two recent hospitalizations, possible cancer, and now in a nursing facility for rehab. I may post my own issues later, which is still on going including a PT/CT scan.

Anyway, I had Proton Radiation about 5 years ago, and believe it saved my life, besides having great doctors to treat me. It was my 7th Cancer, although I put two cancers together for treatment, but it means a lot to me adding them all up since they were found a month apart. Protons are pretty much like IMRT, except I forget the type of radiation it is. Its faste than IMRT, more Radiation stays in the cancer to kill it l, and I only had like three spots, Cancer, in my neck to zap silently, and it is ailent. It only takes a minute or two, but setting the person up on the table may take much longer it’s so precise. The radiation stays in the tumor,and has no exit like IMRT leaving a bald spot in the back of your head due to the exit of radiation.

I had six weeks of radiation for recurrence, which may be about 60Gy, but I had surgery with radiation about 4-6 weeks before that with IORT about 30-40Gy, which is radiation in the operating room along with surgery. Few doctors do this, and mine was one who of the doctors who helped developed IORT.

When I did protons, it had to be for a recurrence or certain type of head and neck cancer. Today, I believe it’s open to more and primary cancers, not just recurrences.

I couldn’t see doing protons with my first cancer as I had 17 spots to be zapped. It would take forever with protons, but there is a newer type of protonsachines that zais the cancers continuously like IMRT does,so it’s faster, and can do multiple spots otherwise they had to move the machine, and change the lens forone. There may be 7 or 8 of the locations in the U.S.tgat has this IMPT. I believe MD Anderson in Texas has both types as an example, and their site may explain it it in much more detail. There is a website I recall off hand as an association with about 30 Proton Centers in the U.S.

https://www.proton-therapy.org/science/

https://www.mdanderson.org/patients...nters-clinics/proton-therapy-center.html

Good luck, and hope this helps