Seeking alternatives to Radiation post-TORS tonsillectomy

Hi @gratefuldad and welcome to Connect. I suspect someone will have an input as to current clinical trials they are either part of or have knowledge of.
Less evasive radiation likely would be Proton therapy as opposed to standard Photon if indeed that is available near you. Proton is far more precise and usually offers up far less damage to good tissue in the surrounding area.
If Photon is your only choice, still despite the side effects, most of us are still here years later. It may not be what you want but neither is cancer. As a patient I can only offer up my opinion and thoughts. I understand where you are coming from when it comes to radiation. If you were 74 rather than 54, I would have a different opinion as to options.
Good luck in finding the answer you are looking for. In the meantime, I and others are here to bend an ear if needed. Courage.

Hello @gratefuldad. So sorry you are now dealing with this cancer. HPV associated cancer has a better response to radiation than non-HPV. In my experience with a couple of friends who dealt with tonsillar at a young age several years ago, One followed through with radiation after surgery and is alive and cancer free today. The other did not want radiation side effects and chose not to do it. Six years later he was dealing with lymph node recurrence, researched for a new short term radiation treatment and traveled to have it done using much lower radiation. He continued to try other nonconventional therapies and has sadly passed away from his cancer. Everyone is different and treatments offered 10-15 years ago have been changes and improved upon. Now there is an accepted lower dose radiation being used but you may need to travel to find this option. I know I have read about it on Memorial SLoan Kettering website. Just google reduced radiation for HPV cancer and see what you find.
My SCC was skin origin deep in ear, not HPV, but I did have a full 70 GY radiation after surgery did not leave clear margins. I had a targeted therapy Cetuximab weekly during radiation to increase tumor response to radiation. Yes, there were and are side effects that are really tough. I made it through without a feeding tube but then mine wasn't aimed at my throat. Living with a dry mouth, hearing loss, memory loss and neck arthritis is the new normal, and much better than being dead from SCC. My best advice is always to look for another opinion from a large cancer or referral center. Don't be afraid to ask for a referral. For 13 years we have driven 10 hours to have my cancer treated and monitored at Mayo Clinic in Rochester. I think it is why I am alive today with metastatic SCC. Do you have such a facility nearby you?

Hi @gratefuldad,
In 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and one of my 3 infected lymph nodes was over 7cm and that is not a typo. I had 35 rounds (7 weeks) of Photon not Proton (less effects like William mentioned above) radiation which amounted to 70 Gy and 3 rounds of the platinum-based chemo Cisplatin and had no surgery whatsoever as I got a second opinion from Froedtert & Medical College of Wisconsin Cancer Center who said I wouldn't need it and were extremely confident I wouldn't need a feeding tube either and they were correct. In addition, cancer free in March of 2009.

Unfortunately, I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from the first cancer as it is literally adjacent to my left tonsil.

One thing I am finding out is this big de-escalation cancer treatments coming about especially for people who got it as a result of HPV. I attached some articles on it here. Also, I talked to my oncologist recently and he said I would have four different options if I had tonsil cancer today.
You will get better. Hope this helps. Good luck.

Best,
Rob