Just Diagnosed with Tonsil Cancer - How to Treat?

@lizzyj58 Hello . First off this a very winnable battle. In particular, if this is HPV +16 as his biopsy will show. Google can certainly take you down the rabbit hole with negative outcomes. Your husband's odds are extremely good!
If this is any help here is my story....I am 58. I was diagnosed with Stage 4 HPV 16+cancer of Base of tongue and Neck March 2023. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I opted out of any Chemo treatment. I chose Proton vs Photon Radiation as I feel it is much less damaging . In my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is 50% less costly or more. Proton is like a pencil beam hitting the target and stopping. Photon is more like a flashlight beam which travels through the target area. I had to drive an hour to Proton treatment. Alot of people drive much further. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth, Neck, tongue and swallowing exercises prior to proton Radiation. He may need to seek a Speech therapist as they can help him with this. It was a struggle to eat during radiation and I FORCED myself. He will lose appetite and everything will have no taste. Now the good news... As far as today two years out. I can eat and drink about anything I want. My taste buds are about 95% , My throat mucositis has almost gone away, Saliva production 95% and My stamina is back to about 95% . I will continue to have a throat scope and CT scan every 6 months for two more years or so. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. It will become more important once He has completed his treatment to monitor any HPV 16 cancer activity in his system. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will not be a fun 6 months or so. However, He will make it and things in a year will be looking up. Some things may not taste the same, some slight neck or throat discomfort and a little less energy but He will be alive. There will be a new "normal" but It beats the alternative. Lean on your Faith.

@jonesja Oh thank you so much for sharing all this , it gives me hope! Did you have a feeding tube?

@lizzyj58 My journey was similar in many ways to Jonesja's. I had more traditional chemo and radiation. I did have a feeding tube (through which my husband managed all nutrition and medication). We never had any issues and I was grateful I had it thru treatment. Reawakening all the muscles to swallow was almost a year long progression from liquids, pureed food, to solids. Two years out I still have to be mindful, but can eat most things. Still have trouble with chili peppers and jalapeños: my mouth is on fire! I, too, lost 30 lbs post treatment. I've regained 7-10 lbs. in the last year so I just look svelte instead of malnutritioned. The cancer treatment worked and I, too, am active and healthy and happy with my new 'normal'!

@jonesja Oh thank you so much for sharing all this , it gives me hope! Did you have a feeding tube?

@lizzyj58 I managed to stay off a feeding tube. I started losing some weight and I knew I needed to get calories in. I would eat a creamy peanut butter and jelly sandwich with Boost drink daily. It would take 45 minutes to an hour to get down. The peanut butter for protein and jelly to help slide it down. Maybe a banana if I could. I started to maintain weight at that point. I also eat alot of eggs anyway I could during that time. However, MANY folks go on a feeding tube and then wean off with no isssues. I did not want to go that route unless I had too. God speed.

Hi John
I finished 7 wks radiation and 7 rounds of chemo in January 2024. My right tonsil cancer (hpv 16) was only at a stage 1, but had metastasized to a lymph node in my neck, so surgery was not an option. I had a feeding tube installed before treatment, and had it removed by June; I had started the long process of eating by mouth maybe a month or so out from treatment- late removal was mostly due to scheduling...I also had to wean off painkillers which were administered thru the tube. I've been cancer free almost a year and a half now. I do have chronic lymphedema in my neck which I treat daily with a FlexTouch compression suit. Pretty hassle free. Treatment is tough, but I found my team (oncologist, radiologist, tech team, lab team, palliative care, speech and physical therapists) to be super and majorly supportive. I trusted them to get me through the process and they didn't let me down...neither did my husband and family and friends. One thing to remember: be patient with your body and mind thru recovery. It takes many months to recoup your strength. The mental game can be challenging, but once you survive cancer treatment and the disease is gone you can pretty much do anything!

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