Just Diagnosed with Tonsil Cancer - How to Treat?

I really appreciate your comments and letting me and others know what the effects of radiation cause I have been having the shoulder pains Sharpe pains I have had three shoulder surgeries in the past and it seems that it's effecting old injuries, I'm wondering if there are any excercisees or stretching I should do to my neck as it feels hard and hot inflamed it looks swelled up like a bull frog ,and they did another pet scan my oncologist said it still shows active although the lymph nodes look better he said he didn't want to scare me that he thinks the scan was to soon and that my inflammation might be giving a false reading so he said they will wait till early July for another pet scan. I'll be reading all the info you put out and once again I thank you for what you are doing here it is so encouraging hereing from someone who's been through this and is giving real information of what you've been through and what might be expected it takes a caring person to do what you are doing I look forward to every post

Hi @russellreed and welcome to the Head and Neck group. You got a good dose of squamous cell cancer in a horrible place to do much about it surgery wise. The radiation does a great job on destroying the cancer cells but unfortunately it also plays heck on your good cells and tissues.
I see you have read some of my input to other members about the healing process so I won’t repeat that. I guess I could say that at your age while you should be working hard and looking forward to the best of life, you get knocked down by this and thrown into a very tough fight. I think you will find however that one day at a time things will slowly get better, both in your health and also in your life as to how you have been made stronger in your mind and sole.
If you have any questions while you heal or just need to talk, I and others are here. As I often tell others, “Courage!”
P.S. Redding is beautiful country.

I could not do the surgery as it went from my tonsil to my tounge and upper pallet and the surgeon at UCSF will not do surgery if he thinks you would need radiation after ,so he made it easy for me my oncologist gave me 42 treatments of radiation I did 2 treatments a day for 2 weeks then 1 treatment a day for the rest I actually worked through my treatments and only took 2 weeks off when my partner got sick it has been tough I'm ten weeks now since the last treatment the hardest thing is dry mouth and not being able to eat ,I made sure to keep drinking boost and ensure and some soups so I did not get a feeding tube as I heard recovery is harder if you get one . If I could of taken care of it with surgery alone I would of done it ,however if I had to do radiation afterwards I would not do the surgery hope this helps try and stay positive and have a good support group I personally think they went overkill on the Radiation with me and don't delay mine traveled from my tonsil and lymph node from delaying it went into my tongue and upper pallet , you will have good days and bad days and there will be times when you might need pain meds to get through ill pray for you , prayers have been helping me through its a long road that is humbling

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.

Was your diagnosis Squamous Cell Carcinoma? Did you require a feeding tube or were you able to swallow?

Take notes. Be there. Don't get discouraged. Know that foods will taste different and may taste awful or cannot be tolerated as time goes by. A feeding tube may be necessary. Keep him hydrated and exercised. He may or may not want visitors, honor that. Know that he is more scared than you but probably won't admit it.
My wife would probably have a lot more to add to this list. Know this however, you have people here that can help or answer questions as they come up. This won't go on forever. All things have an end and a bratwurst has two! Courage.

@lunatuna, great question to ask. My wife, Kate, got me through a long tongue cancer treatment of surgery, radiation and chemo about a year and half ago. I simply could not have gotten through it without her. I think the most helpful things she did were
1. Encourage me, hang out with me, keep me away from despairing thoughts
2. Feed me: I never felt hungry, could not eat solid food. Kate made me eat. If you are going to bother with Boost, might as well get the good stuff, the "530s" as we call them. I still buy a case per week of this:
https://www.amazon.com/dp/B0B1HJL9QK?psc=1&ref=ppx_yo2ov_dt_b_product_details
3. Administer the meds-- I could not keep track of them
4. Distract me--Kate would try to get me out and walking, go shopping in a mall, walk to get coffee, watch Netflix, walk to mass, etc. My inclination was to do nothing, which is not good. Kate even gave some chores to do, in a kind way, just to keep me occupied.

Anyway, the whole thing brought us closer together. I'm glad it all happened. Kate's attitude was, "Lets make this an adventure, and do it together!" And when I was well enough, we took a vacation together, without the kids for once, and it was magic. God bless you.

Take notes. Be there. Don't get discouraged. Know that foods will taste different and may taste awful or cannot be tolerated as time goes by. A feeding tube may be necessary. Keep him hydrated and exercised. He may or may not want visitors, honor that. Know that he is more scared than you but probably won't admit it.
My wife would probably have a lot more to add to this list. Know this however, you have people here that can help or answer questions as they come up. This won't go on forever. All things have an end and a bratwurst has two! Courage.