Just Diagnosed with Tonsil Cancer - How to Treat?

It really depends on so many variables such as what type of surgery they are offering, what type of radiation they are offering and so many other variables. I would seek out a 2nd opinion.

I was diagnosed with lymphoma on the base of my tongue and tonsils in October 2023. I had 12 treatments of radiation, but no chemo or surgery. The side effects of radiation were hard for me and I am still dealing with taste changes and dry mouth. I had sores in my mouth, and everything I ate burned. My dry mouth was made worse and I lost weight as I wasn't able to eat much of anything for 3 weeks after completion of treatments. I know this paints a bleak picture, but on the upside, my follow up PET scan was clear and my oncologist said I am in complete remission. I am hoping my taste will get back to normal but my radiation oncologist did say it could take several months for it to heal. Not sure if this is helpful, but wanted to share my experience. Prayers to all who are fighting this battle.

Just diagnosed with tonsil cancer. Don’t know what to expect

Hi @drmarchell1 and welcome to the head and neck group. I will try to get your post into its own discussion rather than here where we are talking about dysphasia and chronic cough. From that point many people likely will see your discussion and likely offer up advice. In the meantime, read some of the other discussions within the head and neck group. You are not alone and you are not the first or last to not quite understand how this all works. No worries. You are with a good bunch here. Sorry you have the same cancer I had more than twenty years ago. Treatment has been much improved since.

@drmarchell1, I add my welcome. As @hrhwilliam suggested, I moved your comment to this existing discussion about a new diagnosis of tonsil cancer here:
- Just Diagnosed with Tonsil Cancer - How to Treat? https://connect.mayoclinic.org/discussion/just-diagnosed-tonisl-cancer-how-to-treat/

I did this so you can read previous posts as well as connect with other members who have experience with tonsil cancer like @sapphire1158 @slmoore0626 @brad78 @lizralpol @cmickelson15 @jclassey @laconiaborn54 and others.

@drmarchell1, I know this is all very new and I bet you have many questions about what to expect. Have you been told about the treatments you may be having? How are you doing?

I was diagnosed with tonsil cancer that had spread to my lymph nodes 2 years ago- I was able to get excellent treatment st Mayo Clinic- I had a radical tonsillectomy and neck dissection - they were able to get clean margins so I did. Not have to have radiation
For 2 years i had a blood test every 3 months to check for the cancer- and now i get tested every 6 months for 3 years.
I hope and pray you are getting the treatment you need and being presented with all the best options for a successful treatment and recovery

I was diagnosed late last year - surgery to remove left tonsil and neck dissection in February of this year (Stage 1). The first few weeks after surgery was very difficult but I did get through it. The doctors recommended radiation - because I researched treatments I had a very good discussion with the radiation oncologist about reducing the treatments from his initial 5 to 4 weeks. I used the creams/lotions given to me on my neck constantly. The only side effects I encountered were dry mouth and loss of taste. It has been two months since my last treatment and am gradually getting my taste back! Dry mouth still plagues me. I have found I mix water with a drink like a Gatorade or orange juice and am drinking that all day long. Yep, lots of trips to the bathroom but your skin will look great! Right now I am trying to gain the weight back that I lost.

The one piece of advice I can give is to research on reputable sites. Ask questions, go into your appointments prepared. I am like a little kid always asking why. No one can advocate for you as well as you.

This is an incredible discussion group. I have not posted before but have read thru many discussions and that alone is worth its weight in gold! In a way, I find companionship with those who have or are going through similar to me and what they do about it.

Blessings to you-saying prayers for a complete recovery!

Hang in there! Each day is better than the one before.

Met with doctors and was told it actually started in my tongue they said they couldn’t operate on it would have to go through 7 weeks of chemo and radiation

I know tonsils and thyroid are not near each other. But, most important is to be in the care of very experienced doctors. You don't have to like them. Just trust them.
I am 72. Had a complete thyroidectomy plus neck dissection. 35 radiation to that area. Plus 6 chemotherapy boosters.
You are undergoing treatment one day at a time. I was on a liquid diet for 2 months. I hired someone to drive me to and fro treatment.
Make the best choice for your health. Don't decide based on what you think you can get through.
Peace and virtual hugs.

Thank you I know it’s going to be tough have to take one day at a time