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Proton versus Photon for HPV tonsil cancer

Posted by toleolu @toleolu, 4 days ago

I have stage 2 HPV related cancer in my left tonsil that has spread to the lymph node. PET scan shows no other cancer.

I'm scheduled to begin 7 weeks of Photon radiation and chemo next week. I live in Hawaii and none of the hospitals here have Proton Therapy. I am considering going to the mainland for Proton therapy if the benefits of Proton versus Photon justifies the expense. Anyone have any experience with real world side effects and quality of life issues between the two?

For starters, they want to pull 3 teeth for the Photon therapy, did anyone have teeth pulled for Proton therapy?

Thanks

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lizzyj58 | @lizzyj58 | 22 hours ago

MSK do a specific pet scan at the 2 week stage for head and neck cancer. If the tumor is highly oxygenated then treatment can be shortened. My husband had this scan and his treatments were shortened to 3 weeks radiation and 2 ( 2 treatments over 2 days each time) chemo,cisplatin 100mg infusions. He had issues with low blood sugar,easily fixed with glucose tablets. His taste buds were not good but now 2 months later they are much better. For some reason he could taste Chinese ribs,no idea why but it helped. Not having any treatment would be awful,it's worth it.

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harleytiger | @harleytiger | 20 hours ago
In reply to @toleolu "@tbveblen Thanks, that's good to hear. I hope and pray you continue to do well. My..." + (show)
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@tbveblen

Thanks, that's good to hear. I hope and pray you continue to do well.

My biggest problem right now is getting a reasonable idea of how severe these side effects are going to be. I can do 6 months or so of problems. But a year or two of problems and then to have the cancer return doesn't seem like a good plan.

There's also the severe doctor shortage here in Hawaii. I'm two days waiting to hear back from one of my doctors, the radiation doc is on vacation and I can't get through to my chemo doc. I'm concerned that these staffing issues will lead to mistakes being made during treatment that really jack me up.

It's one thing if you're saving a life, it's a whole different thing if you're just prolonging the inevitable.

Again, thanks to all for your comments and experiences. Please keep them coming, they really help.

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@toleolu With a cancer diagnosis, I wouldn't even consider living somewhere that good competent medical treatment and advise was not near by. After all the radiation and surgery I have had, I have to see my ENT every other month or the next 2 years. Fortunately my ENT was trained at UCLA and is top in his field. He told me if my cancer returns he was going to send me to UCLA, same place Michael Douglass was treaded for HPV cancer. Fortunately, I have the insurance now that I can go to the City of Hope in Duarte or UCLA. The City of Hope has the Proton machine and they are very effective with head and neck cancers. I didn't have the right insurance at the time when my cancer popped its ugly head. And honestly, I didn't know about the Proton machine? I was trying to find the best radiation machine only.
My neck is getting better everyday. If my tastes come back fully it was be icing on the cake. Saliva making is still a problem. I keep a Owala water tumblers (not plugging a brand) in my car and nightstand. I was told that the cure rate for HPV cancer is in the 90%, you maybe just fine. Personally, I just would not be at ease if I knew I wasn't near a highly respected Cancer Institute.

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