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

@gratefuldad, any update? Did you decide to start radiation therapy or did you find a clinical trial?

Yes. I attempted to get a second opinion at Mayo Clinic to be considered for de-escalated adjunctive radiation therapy, but ran out of time to be seen by one of their Radiation Oncologists before the window closed on the optimal time frame to start radiation treatment following my TORS on 3/5. Unfortunately, both the Mayo providers I was connected with are not licensed in California and cannot do video consults. In person consultation appointments in MN and AZ were not available until after I will have started radiation here in Los Angeles. I had my CT Simulation visit with my care team at UCLA last night and start radiation in a week. Thanks to all at Mayo who offered to try to help!

Hi @gratefuldad, I had TORS in 2023 when I was 53. If it would be helpful to you, I am willing to share my journey and what the DRs told me. I prefer to do it via DM or email, so if you are interested, just let me know. Either way, best of luck, and you've got this!

Hello . My case was very close to yours. I was diagnosed with SCC HPV 16+cancer of base of tongue March 2023. Stage 3.
If this is any help here is my story....I am 58. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I opted out of any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost my appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 20 months out of radiation treatment I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . I had 4 NavDx negative tests with 0 so I have elected to stop that for now. However, I will continue to have a throat scope and CT scan every 4 months for two years. So far no evidence of cancer remains.
Make no mistake this will not be a fun few months but things will be much better for you in the next 6 months or so. I take the time now to thank God every morning when I get up. Have faith . God Speed

Thanks for sharing. It gives me hope that there is light at the end of this tunnel. What a blessing that you have recovered so well. God is good!!