Just Diagnosed with Tonsil Cancer - How to Treat?

FYI Diagnosis is right tonsil Squamous Cell Carcinoma HPV Associated p63 and p16 (not fully aware of that meanig but reading it from the biopsy.) Apparently it has also spread to both Lymph nodes

@johnbonani I have to say I'm very careful about giving advice but would be glad to share my story.
Diagnosed with p16 positive SCC January 8 via biopsy. Had found a lump under my left jaw one morning drinking coffee. January 31 underwent surgery. Small tumor in left tonsil but had both tonsils removed. Had some nodes on left side removed as well. Was considered stage 1. Pathology came out post op and was very good and doctors were happy. I'm 45 so they said they just want to watch me. No chemo or radiation at this time. So like you, I've been worried if I'm doing the right thing. In the end, I trust my doctors, my family, and the good Lord. My doctors have done this many, many times. Considering my concern, I've switched my focus to surveillance and been active in my care. Monday I do a blood draw for Navdx. April 12 first ENT visit. A few months later PETCT. And so on......but I completely understand. These decisions are tough.

Radiotherapy works well but slowly and it can damage your throat and neck badly, it throws off your taste buds aswell so spicy, dry and rough foods are out of the question. Chemotherapy really tires you out and it makes you want to sleep alot more. A combination of both is good for the cancer but bad for your mental health, my mum (stage 3 tonsil cancer aswell) ended up becoming extremely depressed when doing the combination of both treatments and there was times where she didn't eat or drink for days at a time. Both Radio and Chemo are good, just make sure that whatever you choose your happy with it and it isn't too overwhelming.

Wishing you a nice recovery, i hope everything goes well.

I am not a doctor but this was my experience. I was diagnosed with HPV16+ OSCC in March 2023 at 56 years old. I had an option of Radiation/ Chemo or TORS surgery. In the end I just wanted it gone and cut out so I elected the surgery. Of course I was very fearful at the time. I have since learned that this type of cancer is very treatable and successful on either option. I had TORS robotic surgery April 2023. I had a right neck dissection as well with all lymph nodes removed as cancer had spread to a couple of lymph nodes and TORS surgery to remove primary tumor of 3cm at base of tongue. All margins clear. Also, I completed 30 rounds of Proton Radiation in July to "cleanup" and cancer that may have been left behind. I had NO chemo. I imagine if you are Stage 3 you will have radiation on top of your surgery as I did. As far as presurgery I don't recall doing much but waiting for the Surgery. The biggest issue I had was dysphagia and Not being about to swallow (eat or drink) for about two weeks after surgery. I would suggest to start doing mouth, tongue and swallowing exercises today. A Speech therapist can help you with this. As far as post-op. The pain is fairly severe for one week after surgery. I had alot of mucous where you feel like you are almost drowning. It will be hard to eat and drink or sleep. Think soft foods and Boost drinks. I had pain medications which helped tremendously. As of today I would say I am about 90% back to normal . It is a SLOW climb back and you will never be quite "normal" again but you will be alive. CT scans and throat scope every 3 months for a year or two to monitor any recurrence. Ask your doctor about the NavDX blood type which detects HPV16 cancer in the blood as it will help once you are being monitored. Good luck and Have Faith. It will be a journey for sure but you can do it! Stay positive.

Jonesja and I are very similar.
58 diagnosed April 2023
Stage 1 with right lymph node extension
Base of tongue
TORS with tonsils removed and some base of tongue clear margins
Then SOC (standard of care) 7 weeks of radiation 35 treatments with chemo once per week for six weeks of cisplatin

Also had a feeding tube(peg tube) which really helped

Thank you so much to all of you who have responded! It really is helpful to hear honest real life experiences of others who have gone throught it.

My husband was diagnosed with tonsil cancer, same as you, a few lymph nodes in neck also. They didn’t do surgery since it already was in lymph nodes so recommended three chemo sessions and 35 radiations. They told us this was the best treatment for him, it was stage 2. It is hard, and since he is 78 harder. Just finished treatments and trying to heal. Good luck.

Thank you cris2 for sharing that. We still have not made the decision on surgery vs radiation/chemotherapy.
Waiting on pet scan results then another doctor meeting, and will make the decision then. Either way will be difficult as all of these stories confirm but trying to focus on the bigger picture that there is life after this ordeal. On that positive note I wish you and your husband all the best.

Thanks all. Everyone has a slightly tweaked version of the same thing but hopefully the longterm outcome is all good. I just started this journey with my husband and am asking what on my part (wife ) is most helpful ? I am trying now to fatten him up for chemo/radiation. Its not my style to hover but want to be helpful and supportive. Any advice is helpful from those of you who have gone through it.