Just Diagnosed with Tonsil Cancer - How to Treat?

Posted by johnbonani @johnbonani, Mar 15, 2024

I've just been diagnosed with stage three tonsil cancer on Feb 22nd. 63 year old male. Have seen the surgical oncologist and the radiology oncologist, both present the pro's and con's of each, both treatments sound terrible. Both recommend there own procedure and essentially leave it up to me the patient to decide. I'm wondering if some of you in this discussion have had surgery then radiation or just radiation/chemotherapy with no surgery or combination? Full dose of radiation sounds awful but then so does the surgery and I'm told they'll have to do radiation after but perhps a lower dose. Any feedback would be so very much appreciated.
🙂 - John B

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laconiaborn54 | @laconiaborn54 | Mar 20, 2024

In reply to @johnbonani "Was your diagnosis Squamous Cell Carcinoma? Did you require a feeding tube or were you able..." + (show)

After surgery and lots of homework and talking to others I opt out of radiation. Chemo was definitely not talk about and my radiologist didn't really push it. I go to doctors once a month and so far so good. The feeding tube and the dental work really had a huge impact on my decision

lunatuna | @lunatuna | Mar 19, 2024

In reply to @hrhwilliam "Take notes. Be there. Don't get discouraged. Know that foods will taste different and may taste..." + (show)

Thank you. Im working hard to get him to gain a few pounds before the chemo/ radiation starts. But dang, I've gained it too.

lunatuna | @lunatuna | Mar 19, 2024

In reply to @mnmike "@lunatuna, great question to ask. My wife, Kate, got me through a long tongue cancer treatment..." + (show)

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.

stephenrfleury | @stephenrfleury | Mar 19, 2024

In reply to @hrhwilliam "Take notes. Be there. Don't get discouraged. Know that foods will taste different and may taste..." + (show)

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.

mnmike | @mnmike | Mar 19, 2024

@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.

laconiaborn54 | @laconiaborn54 | Mar 19, 2024

In reply to @brad78 "Same with me...tonsils and a bunch of nodes on left. Surgeon was adamant that I hold..." + (show)

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.

William Olsen, Volunteer Mentor | @hrhwilliam | Mar 18, 2024

In reply to @lunatuna "Thanks all. Everyone has a slightly tweaked version of the same thing but hopefully the longterm..." + (show)

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.

brad78 | @brad78 | Mar 18, 2024

In reply to @johnbonani "Was your diagnosis Squamous Cell Carcinoma? Did you require a feeding tube or were you able..." + (show)

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.

johnbonani | @johnbonani | Mar 18, 2024

In reply to @laconiaborn54 "October 2023 had both tonsils out left on cancer and tissue removed from back of throat...." + (show)

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

laconiaborn54 | @laconiaborn54 | Mar 18, 2024

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.