Oral cancer: proton vs photon radiation?

FYI-I was told by my Mayo rad oncologists that Mayo charges insurance companies the same rate for proton and photon even though the costs of proton are much higher. They belive that the efficacy of proton is much higher than photon and want to develop data to prove it and justify the treatment. we'll see.

I am 10 days post 30 rounds of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes on one side of Neck . I had TORS surgery to remove tumor. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth,Neck, tongue and swallowing exercises prior to proton Radiation. If you have a Speech therapist they can help you with this. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. However as far as today 10 day out of treatment. I can still eat and drink although what you would call a soft diet. Think eggs, cottage cheese, Milk, Smoothies, bologna, Boost, soups, etc. My taste buds are about 20% and seem to be coming back some. My mucositis is going away and Saliva production is slowing getting better. My hair has stopped falling out. Neck skin burns are about healed. My stamina is back to about 80% . I my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is much cheaper.

I am 10 days post 30 rounds of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes on one side of Neck . I had TORS surgery to remove tumor. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth,Neck, tongue and swallowing exercises prior to proton Radiation. If you have a Speech therapist they can help you with this. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. However as far as today 10 day out of treatment. I can still eat and drink although what you would call a soft diet. Think eggs, cottage cheese, Milk, Smoothies, bologna, Boost, soups, etc. My taste buds are about 20% and seem to be coming back some. My mucositis is going away and Saliva production is slowing getting better. My hair has stopped falling out. Neck skin burns are about healed. My stamina is back to about 80% . I my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is much cheaper.

I had proton beam therapy 2X.. First time was 35 doses over 7 weeks. It was hard as I was also getting chemotherapy simultaneusly, cisplatin. As William siad the radiation stay with you up to a month following the completion of your treatments. I lost my saliva glands and was on a feeding tube for 15 months because my esophagus became constricted. It got the tumor that had embeded on the flap of my esophagus and other tumors around it.
One year later I had 5 doses over 2 weeks and it wasn't bad for clean up-no chemo. My cancer is now chronic so I am living with it. I had to have a tracheostomy one year later because of the damage inflicted by the radiation. I have learned to live with a gtrache and am still kicking happily. It's been a journey, but I'd do it again to get rid of the life threatening tumors I had. I never would have been able to cruise around South America this year and see my Panamanian AFS student this year if I had not gone through proton beam radiation. (picture below).
PS. The radiation oncologists at Mayo were amazing!

Thank you. Treatment is set to begin mid July, pending insurance approval. I appreciate your feedback.

Hello bwparker. Proton beam therapy as you probably are aware has a very accurate beam and penetration point for clean up work that surgery could not get to without causing damage to surrounding tissue. That being said it is really impossible to know what additional damage may occur to vital areas in your specific case.
You are asking what side effects you might have with a few needles to the throat versus a few baseball bats to the throat? I guess the answer would be that you can expect far fewer side effects than most people experienced.
Exactly where these areas are that will be exposed will determine side effects. Certainly therapy to the vocal cord area will most likely effect speech or the ability there of. You may have issues swallowing, sore throat, pain turning your head, nerve tingling, etc. You will most likely continue feeling worse for a couple weeks after you therapy ends until you finally rebound and begin to heal.
All of us experienced some dismal side effects from radiation therapy but those who have had proton have often had an easier go of it.
You should ask, as your treatment schedule continues, how to deal with any specific issues that crop up. There is a wealth of experience out here willing to help you get through this.
When does your treatment begin?

I’m looking at Proton Beam radiation to clean up possible cancer left after throat and neck lymph surgery. Got clean edges in my throat so Proton Beam will be directed to neck only. Got many clean lymph nodes, too, but primary lymph node was larger … so clean up radiation is recommended. What side effects should I expect? Since there is not a specific tumor to address, how will we know if the radiation worked or not?

Hi @kco,
Conventional radiation (photon) uses a beam of x-rays that travel through the body in a straight line. It deposits its energy in the normal tissues around the targeted tumor. Proton Beam therapy uses pencil beam scanning to deliver concentrated radiation to the tumor while minimizing the exposure to the surrounding healthy tissue. You can read more about Proton Beam Therapy here: https://www.mayoclinic.org/tests-procedures/proton-therapy/about/pac-20384758

Proton therapy isn't widely available in the United States. Mayo has treated oral cancer with proton beam therapy since we opened in 2015.

Fellow members @puprluvr and @rgotto41 may be able to share more about their experiences. @kco, are you deciding which radiation treatment to have?