Hypopharyngeal cancer: Anyone treated with proton radiation?

I had cheek cancer three years ago, and was treated with surgery and radiation. At that time, proton radiation was not available in my area. My sister, had tongue cancer 17 years ago at the Mayo Clinic in Scottsdale. She had no radiation. In December, she had jaw bone cancer removed at the Mayo, by the same doctor, who I will call doctor H. I was there with my sister, and had the opportunity for doctor H. to review my case. The one thing he told me is that you can remove cancer, but you cannot get rid of radiation side effects. My recommendation is to have a second opinion about radiation. I know that in some cases, depending on the cancer and the stage, you cannot avoid it. But you know, I can deal with dry mouth, lose of teeth, recurring mouth infections, lose of thyroid function. They only remind me of my humanity, and have made me more aware of being more caring for others.

I had cheek cancer three years ago, and was treated with surgery and radiation. At that time, proton radiation was not available in my area. My sister, had tongue cancer 17 years ago at the Mayo Clinic in Scottsdale. She had no radiation. In December, she had jaw bone cancer removed at the Mayo, by the same doctor, who I will call doctor H. I was there with my sister, and had the opportunity for doctor H. to review my case. The one thing he told me is that you can remove cancer, but you cannot get rid of radiation side effects. My recommendation is to have a second opinion about radiation. I know that in some cases, depending on the cancer and the stage, you cannot avoid it. But you know, I can deal with dry mouth, lose of teeth, recurring mouth infections, lose of thyroid function. They only remind me of my humanity, and have made me more aware of being more caring for others.

I had cheek cancer three years ago, and was treated with surgery and radiation. At that time, proton radiation was not available in my area. My sister, had tongue cancer 17 years ago at the Mayo Clinic in Scottsdale. She had no radiation. In December, she had jaw bone cancer removed at the Mayo, by the same doctor, who I will call doctor H. I was there with my sister, and had the opportunity for doctor H. to review my case. The one thing he told me is that you can remove cancer, but you cannot get rid of radiation side effects. My recommendation is to have a second opinion about radiation. I know that in some cases, depending on the cancer and the stage, you cannot avoid it. But you know, I can deal with dry mouth, lose of teeth, recurring mouth infections, lose of thyroid function. They only remind me of my humanity, and have made me more aware of being more caring for others.

Hello. First time here. I am 2/3 years out from 2nd head and neck cancer recurrence. My cancer started on the left side of my tongue, recurred there once again and then recurred on the left buccal mucosa. It's hard to know what will happen next - doctors seem to be tight lipped about making any predictions. Is anyone else in this position?

I had cheek cancer three years ago, and was treated with surgery and radiation. At that time, proton radiation was not available in my area. My sister, had tongue cancer 17 years ago at the Mayo Clinic in Scottsdale. She had no radiation. In December, she had jaw bone cancer removed at the Mayo, by the same doctor, who I will call doctor H. I was there with my sister, and had the opportunity for doctor H. to review my case. The one thing he told me is that you can remove cancer, but you cannot get rid of radiation side effects. My recommendation is to have a second opinion about radiation. I know that in some cases, depending on the cancer and the stage, you cannot avoid it. But you know, I can deal with dry mouth, lose of teeth, recurring mouth infections, lose of thyroid function. They only remind me of my humanity, and have made me more aware of being more caring for others.

Hello @alpaca,

Welcome to Connect. I'm sorry to learn of your cancer, but glad that you've come to the Connect community to find some answers.
You'll notice that I moved your message to a discussion that was started a while back. Please feel free to read back through the messages, and tag other members for more information.

I hope @lisa_sj99 @mrsjhagen18 @sylviapf @lzzie @loli @elizabethbryant, will also join the conversation. While they don't have the exact same cancer, I'm sure they can offer some thoughts and insight.

@alpaca, have you considered getting a second opinion?

I had cheek cancer three years ago, and was treated with surgery and radiation. At that time, proton radiation was not available in my area. My sister, had tongue cancer 17 years ago at the Mayo Clinic in Scottsdale. She had no radiation. In December, she had jaw bone cancer removed at the Mayo, by the same doctor, who I will call doctor H. I was there with my sister, and had the opportunity for doctor H. to review my case. The one thing he told me is that you can remove cancer, but you cannot get rid of radiation side effects. My recommendation is to have a second opinion about radiation. I know that in some cases, depending on the cancer and the stage, you cannot avoid it. But you know, I can deal with dry mouth, lose of teeth, recurring mouth infections, lose of thyroid function. They only remind me of my humanity, and have made me more aware of being more caring for others.

I'd like to add my welcome, @alpaca. We have another Kiwi in our Head & Neck group. Please meet @lzzie.
You may also be interested in this discussion:
- Mouth sores, no taste and no saliva and other side effects http://mayocl.in/2bGXo9g