Just Diagnosed with Tonsil Cancer - How to Treat?

This was hard on my husband and a shock as he was healthy and never sick. To have to have chemo, radiation and take medicine was very hard for him, so I’m the one to do everything else. I made appointments, talked to nurses, looked up things to see what works and not, etc. He slept a lot and not feeling the best so I did everything. I had to fix things he could eat, sometimes he couldn’t eat anything, it was hard seeing him like this. Now he’s all done and trying to recover. Good luck.

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/

October 2023 had both tonsils out left on cancer and tissue removed from back of throat. I also had neck surgery and 43 lymph nodes taken out luckily only one cancer. Over all surgery wasn't that bad. Yes throat was somewhat uncomfortable and ate ice chips and drank alot of water.
Neck surgery was no problem at all if anything hurt it was the drain they put in.
I opt out of radiation after doing homework and talking to others. I now go back to surgeon once a month so far alls ok for now.

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

Same with me...tonsils and a bunch of nodes on left. Surgeon was adamant that I hold off on radiation and just observe so that's what I'm following. Oncologist also said he would do low grade but would not make much of a difference. He's watching me too. Just did my Navdx test today. Hoping for best.

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.

Well good luck, so far for me it's working out OK. One of the biggest things for me after doing homework and talking to others was the feeding tube. Some had radiation 6-7 years ago and their still on feeding tube. I didn't want to live like that.

@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.

Better than taking notes, use the voice recorder on your phone. We had it ready and asked the doctor when they came in if they minded. It was always ok and even encouraged.

Thanks for your info and glad you are doing well. Im thinking of an old school white board to track meds, appts and chores ( love that idea). I have a case of boost coming tomorrow too! Hello to Kate.