Interventional Radiation treatment for benign parotid tumor

Plus would never do radiation again if i new how i would be feeling especially when they keep saying it will get better

Last year I had surgery for a superficial left parotid tumor that had tunneled through my jaw. The parotid gland portion was benign, but inside my jaw was a turkey gizzard size Adenoid cystic carcinoma that was wrapped around my facial nerves, my carotid artery, and another artery.

It was an extremely difficult and complicated surgery because of the tumor location inside my jaw, but Dr. Eric Moore of Rochester Mayo successfully removed the tumor and the whole left parotid salivary gland with very minimal damage to my facial nerves. He was amazing!

Though it had not spread to my lymph nodes, the malignant tumor was wrapped around the facial nerves and blood vessels. Because of that, there was high risk of perineural and vascular invasion and reoccurrence of the cancer. So it was recommended that I follow up with 30 days of proton beam radiation to destroy any remaining microscopic cancer cells in my jaw.

I was very concerned about the short and long term effects of radiation to my jaw area, so I visited with my holistic naturopath doctor. He told me he had two patients die of the same cancer I had, so he said he would take the full course of radiation and put up with the side effects. I trusted his opinion and agreed to six weeks of proton beam radiation.

To maximize the benefit of radiation and minimize the negative side effects, I researched and decided to do Intermittent fasting and the Ketogenic diet during the six weeks of radiation, with the approval of my radiologist.

I finished six weeks of radiation with NO horrible side effects—no mouth sores and no loss of taste buds. One week after radiation was completed, I did develop a very large radiation burn on the left side of my face and jaw. I also lost the hair on the back left side of my head from my ear over to the center back of my head and down to the hairline.

The radiation burn has since healed completely. I decided that skin and hair are superficial, and I thought if they were the only side effects I had, then I was very fortunate.

I was very rigorous taking extra good care of my teeth during and following radiation. My recent visit to the dentist confirmed that my mouth and teeth were in excellent condition. I am still working on stretching my jaw because of post surgery and radiation trismus. I am confident I will get my jaw/mouth opening motion back.

My six month post surgery/three month post radiation check up was excellent. I am happy with my decision to have radiation. But everyone has to make their own choice on what is right for them. My recommendation is to be proactive in your care. I truly believe that intermittent fasting and keto minimized my side effects from the 30 radiation treatments.

Good luck on whatever decision you make. Be your own advocate!

@ban1952

My wife had the same procedure (actually surgery), first at university of michigan. They cut her open and DID NOT find the cancer. Mayo took her as a patient, surgically removed all the cancer, in her parotid gland, and a bit in the jaw bone hinge.

The bad news is the radiation destroyed her lower jaw bone (mandible) So they operated on her, took out the damaged jaw bone, and replaced it with a bone in her leg. Quite the surgery, two doctors, one removed the leg bone while the other cut her open, in the throat area. She also had the proton radiation process. That fixed that, except now she has a problem with the leg, will probably require PT, we hope.