New cancer 2 months after TORS Surgery chemo+radiation

Hello . My case was very close to yours. I was diagnosed with SCC HPV 16+cancer of base of tongue March 2023. Stage 3. 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. Today I am back to 95% with no signs of cancer.
There has been a real movement for De-escalation Radiation in the last couple of years especially if the cancer is caught early. I am a little confused . Did your surgery provide Clear margins showing no cancer remaining during TORS surgery? Have you had a NavDx blood test? Is this a large hospital which deals with a large amount of Head and Neck cancers? Can you get a second opinion from another Oncologist in the area?

I'm in such a messed up boat. Had a stroke March 15th and during all its testing is when they found my left neck lymph node was pretty big. After getting out of the hospital I was sent for a biopsy of the lymph node, my tonsils and base of tongue. Only the lymph node came back positive for hpv cancer. They still opted to do tors surgery because of a raised area on the base of my tongue. Nothing was positive other than my lymph node. Removed tonsils, adenoids, and tor surgery on the base of tongue. It's been nearly 3 weeks since and I'm still in pain daily and alot worse when swallowing. Today was my oncologist appointment and they recommended radiation and chemo. Before today I have been told by mostly all medical staff I wouldn't need either and that tors would remove it all. I'm devastated. I've only just turned 40 in May and am ok health wise. But I am beyond scared. I watched my mother wither away from radiation and chemo. And again, I also went through this severe throat pain twice already. It's so bad. Now they say radiation will be like a bad sunburn inside my throat. Idk if I can take this man. Been in tears all day.

Your Doctors should have already provided the pain med scripts as well as the anti nausea med
I was told to use the anti nausea med as a last resort because it can really bind you up

Never had any of my doctors or others and I have seen many over the years not allow it and some actually were glad so important information is not missed. I have done this in 2008 with my first tonsil cancer and more recently this year for my tongue cancer.

Best of luck with the journey.

I love the med log sheet and will definitely use it!! But I thought you could not record in a doctor's office??

Two things during my cancer journey that helped me keep track of everything from diagnosis/treatment options to my medications or pain meds was one I recorded every appointment with every person I was in contact with.

One, I bought a Philips VoiceTracer DVT1160 ($42 on Amazon) to record providers so I could always go back and play so nothing is missed.

Second, for meds I used this attached pdf to keep track.

Hope this helps ease some of the frustration.

My husband has not started chemo and radiation since the cancer was not all gotten with TORS. We have not seen the results of the Petscan and will meet with oncologists in next 2 weeks. How bad will the chemo and radiation get? He is in constant pain now from nerve damage to right side of head and neck and jaw. I'm so confused. I have an arsenal of pain meds but from many doctors and don't know what to give and what I can give together so just try different things. Hoping one of his doctors, maybe ENT surgeon, will help. He has a pain management doctor but he was his doctor during back surgery. Don't know if he will help now. May refer us back to oncologist. Hoping they will be able to give him a pain management plan that will keep the pain tolerable. What is the med of choice now for nausea during chemo or does it differ for all. Guess I'm premature here and will get the answers in the coming weeks. I find these blogs very helpful and hopeful. Thank you to all~

Thank you for the encouragement. Everything you said is true.
3 more rad treatments to go.
Feel like total crap.

Hello @mjsweeney205 and welcome to the Head and Neck group. I am sorry for not getting a welcome out to you sooner, been under the doctor's knife myself. Anyway you are going through the wonderful one-hundred year old idea of zapping the body with radiation in hopes the cancer dies before you do. It usually does. And because you are not feeling bad enough, lets' give you some Chemo to wipe that smile off your face.
The radiation will continue to bring you down for several days after you are done with the treatments. Taste and smell usually takes from a few days to a few weeks before it begins to return, and it seems to never return exactly like it was before. Who knows? Maybe you will finally like the taste of rutabaga.
Try to eat what you can and drink everything you can. I tell people to eat a whole pie if that what you want. Calories are what you need over anything else.
I went through this in my late forties. I can only imagine what you are going through now as you are just a few years older than I am currently. Not sure I would want to do it a second time. It's a heck of a fight you are in. Know this: a year from now you will be back to the links and driving the scooter everywhere. Two years from now you will feel a whole lot better.
If you have questions, I or someone here has answers. In the meantime, just get through each day as it comes. Don't let the Old Man in! You are not done yet. We got this.

I had HPV+ SCC base of tongue cancer and underwent chemoradiation for it after induction chemotherapy at Mayo Clinic. Since your husband is in good healthy he can get through this. I would see if Proton radiation is a possibility since it isn't quite as hard on the body. Did your husband have any chemotherapy or radiation after his TORS surgery? Yes chemoradiation is hard but there are several things they can do to help lessen side effects.