Types of radiation therapy and chemo therapy combinations

Hi @maeono welcome to our Head and Neck group.
Your brother as a patient or you on his behalf can question the path his doctors/oncologist want him on. Proton therapy for one can be performed anywhere it is available. It is common to have radiotherapy done elsewhere other than where the surgery was done. Just ask the question.
Keytruda and other drugs have been quite successful in helping to attack HPV16+ marker SSC. Again, if docs are not familiar or encouraged by this tidbit, perhaps your brother is in the wrong place or with the wrong doctors. Ask about the experience in Squamous Cell cancers, not about cancer in general. For example my oncologist performed radiotherapy hundreds of times yet I was his first tonsil SSC patient and in his entire career he had only one other after me. Mine was a bit botched but I’m alive 22 years later.
Don’t let them remove his other tonsil. It is a handy filter in case the cancer should try to return. 30 lymph nodes is already way beyond necessary in my opinion. Let’s just keep cutting the limbs off the tree until all the leaf bugs are gone eh? “First do no harm.”
Please ask the questions and if the answers are unsatisfactory then keep asking. HPV SSC is quite treatable and has many advances in treatment just in the last few years. Egocentric doctors seldom have advanced for centuries. Choose wisely.
Have you explored other options?

Thank you for your response. Just starting to look at other options. He just had surgery last week and originally he thought it would just be surgery and maybe radiation but hopefully not. The outcome of the surgery changed that and now the plan is another surgery, radiation and maybe chemo. That was unexpected and a disappointment. His oncologist has a lot of experience as evidenced by his published research. But I know educating ourselves is important too for informed discussions and decisions. Trying to gather that!

I had squamous cell tonsil (HPV) removed cancer and I did ask about proton therapy. My cancer surgeon said it would be worth using if my insurance paid for it, but she honestly didn’t think it made a big difference in life quality. I had radiation and chemo, no surgery because it was in a place where I was told would require breaking my jaw. I had 6 chemo treatments and 32 radiation treatments. I too had a very painful earache, but no hearing loss. I still take meds for the earache. Mine however is being caused from a combination of nerves attached to my neck and throat. I have a throat ulcer that affects my ear every time I eat something that irritates it. Addressing the tonsil removal-why????? I never had anyone say my non-cancerous tonsil should be removed. I’d definitely recommend getting a second opinion on that.

Hello @maeono.
Thankfully, our moderator/mentor William Olsen has explained important information to you concerning your brother. You are a good brother! Without re-writing my boring story, just click "past discussions" if you wish to learn of the journey. For the record, my final diagnosis was "cancer of the Pyriform Sinus." These are located near the vocal cords.
The first consulted ENT performed a Nasal Endoscopy (NE). This ENT proclaimed I had "arthritis in my neck." When I went back with increasing throat/ear pain, she performed a second NE, then scheduled surgery to remove my tonsils. That great inner voice yelled "NO!" To clarify, my tonsils atrophied away due to age several years ago! After much protest on my part, a second ENT ordered a CT scan, and they STILL did not detect the tumor, even after being read by a radiologist. The Radiologist did diagnose me with "Eagles Syndrome" (elongated styloid bones grating into nerves). Had I listened and accepted those diagnoses, I would probably be long dead. A third ENT (a University Doctor) took his "magical" scope and after yet another identical NE, detected the tumor right off the bat. Really, it was not magical, but that still, "small voice," that kept me going for more opinions. Our pilot in life, God, turned that small voice into a large scream to get more opinions. Praying also caused my inner GPS to lead me to that third really great ENT.
I did seek Proton and drove hundreds of miles to a hospital for an evaluation. They said using Proton on the Pyriform Sinus cancer would not be possible, since those structures are two...It was difficult to understand what they were saying. Also, I did not take the recommended Chemo, as the Oncologist admitted it would increase my survival rate by about 1%. Everyone must make up their own mind. For me, the chance of hearing loss was too great. My husband is almost deaf, and two people with limited hearing is not good! Best wishes to you and your brother. Keep praying---you are both in my prayers.

Thank you for your prayers and support! The doctors need to remove the other tonsil to look for the cancer in the tissue which may be small and only visible to the pathologist. But it will help them target the radiation if they do find it. It’s the most likely place for the cancer to be and if found will limit the field of the radiation. If not found there will need to be a wider field of radiation so in this case we are hoping they find it 🤞 🙏 .

Thank you for your response! The doctors need to remove the other tonsil to look for the cancer in the tissue which may be small and only visible to the pathologist. But it will help them target the radiation if they do find it. It’s the most likely place for the cancer to be and if found will limit the field of the radiation. If not found there will need to be a wider field of radiation so in this case we are hoping they find it . I understand their thinking but admit it does seem a little odd to remove something hoping to find the cancer. However my reading is that tonsils are lymph nodes so it is similar to removing the neck lymph nodes in an effort to stage the cancer and plan the treatment.

I was diagnosed with HPV cancer of base of tongue March 2023. I had TORS surgery to remove tumor and lymph nodes through right neck dissection. 2 of which had cancer. I am 57. I chose Proton vs Photon Radiation as I feel it is much less damaging . In 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 50% less costly or more. Proton is like a pencil beam hitting the target and stopping. Photon is more like a flashlight beam which travels through the target area. I had to drive an hour to Proton treatment. Alot of people drive much further. Currently I am 120 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 . 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. He will lose appetite and everything has no taste. However as far as today 120 days out of treatment. I can eat and drink about anything I want. My taste buds are about 35% and seem to be coming back . My throat mucositis is almost gone away and Saliva production is slowing getting better. My hair has stopped falling out. My stamina is back to about 80% . I chose no Chemotherapy as they could see the tumor through a PET scan. As I understand Chemo will travel throughout the body to "find" the cancer and attack it. Has he received a full body PET scan?

I am hoping for a good outcome for your husband. Be patient with him because he’s got a hard road ahead. I was very difficult to deal with because I wouldn’t eat. Don’t try to force him. It will do more harm than good. Radiation is super painful and I’m sad for anyone who has to go through it. Get Aquafor for his neck to rub on. Start that immediately and also try Helios for his throat. They both were a really big help for me. Later maybe ask for a Gabapentin script if he has tongue issues. That helped me too. Saying prayers for you both. 🙏🏼

I spelled it wrong. It’s aquaphor. And Helios is on Amazon. The grape flavor is good.

I had SCC on the base of my tongue caused by HPV-16.

I was treated with chemo and radiation. I also wear hearing aids since I have hearing issues. I was told that Cisplatin was the chemo of choice for the type of cancer I had. Since I had hearing loss already, I was given Carboplatin and Taxol instead. Three years so far of clean scans.

Good luck.