My wife has just undergone surgery for gum cancer. While the margins were clear, the tumor was close to the margins and was aggressive appearing. The tumor board recommended a 6 week course of radiation therapy. We have explored conventional radiotherapy and proton therapy. Her oncologist leans toward conventional radiation but admits he knows little about proton therapy. We would love to hear from anyone about their experience with proton therapy, especially about the side effects they experienced.

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Hi Michael s

sorry to hear of your plight. I had a malignant carcinoma in my mouth, which was removed in August 2018. Involved a 14 hr op and extensive mouth and neck surgery and scared the bejesus out of me and my wife and family. Depending on the the stage, surgeons/radio therapists are generally reluctant to perform radiotherapy on soft tissue in the mouth as it can only generally be performed once. I’m under Christie’s in Manchester who are superb and I know they’ve just just had proton beam equipment installed which is state of the art. Get your gp to refer you (not sure where you live). Best regards, stay strong, don’t give up. 

Andy w

Good thoughts, Andy. thanks for writing. Sorry you're having to go through all this. My wife's surgical margins were clear..but tumor was still too close to margin. So, they recommended what they call "salvage radiation." We finally found an expert in use of proton therapy for head and neck cancer and she just finished a 33 day regimen. We are glad we went with protons as the side effects have been a lot better than we expected. She was able to maintain eating and swallowing without having to get a feeding tube. We were told that conventional radiation would carry a 40-60% chance of her needing one. She has had some soreness of her cheek and tongue on the treated side and fatigue...but that is all. Incidentally, not related, she had to have emergency gallbladder surgery two days after she began radiation therapy. 

We live in Oklahoma City, which was one of the first places in the USA to get a Proton center. About 2-3 years ago, they hired a radiotherapist from Chicago who had been doing research on head and neck cancers.

I hope you have this thing beat and nothing but good times ahead.

 

Mike S

 

 

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