Just Diagnosed with Tonsil Cancer - How to Treat?

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.

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

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.

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

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 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

An early PET scan often shows scar tissue as cancer when it is not. Even after years that can be the case, but if they continue to compare scan to scan they can get a better idea as to what is real and what isn’t. PET scans are useful to help with diagnosis but they are not the final word nor should they be.
You sore muscles are very common after radiation. Many people including myself experienced nerve pain, twitching, and numbness for several years. The fact that you are working a physical job although difficult, is probably a good way to keep in shape and help heal, tough as it can be some days.
I traveled for work. When people I met saw my red neck and face they formed an opinion about me that led to incorrect conclusions. I let them talk stupid for a while and if it would persist, I would then tell them about radiation treatments which would shut them down in a heartbeat.
You will probably worry that every little thing not normal is a return of the cancer. Most likely it is not. It’s normal to feel that way for a long time.
It’s also ok to see life differently after your experience. How can you not? You have earned a second chance. The healing over the next two years might at times get you down but eventually you will get back to something close to where you feel great again. The healing from radiation damage takes a lot longer than a broken bone or a sunburn, a lot longer. Be patient along with the courage you have.

Thank you for your invite this is helping me with some of the anxiety issues and I'm learning it's one day at a time ,I'm also learning when I need rest I'm going to rest

I had SCC on the base of my tongue and a couple of lymph nodes in the fall of 2020. I had chemo and proton radiation, since have had multiple cleans scans.

I wrote a blog during my experience (non-revenue generating) if you would like to review it. You can read it at:
https://stevefleurysblog.com/2020/10/29/part-1-the-beginning/
More importantly, my wife wrote a wonderfully insightful post of lists and non-advice advice.
https://stevefleurysblog.com/2021/01/05/lists-and-non-advice-advice/