Husband diagnosed with tonsil cancer: looking for tips and support

Hello @johnbonani John and welcome to the Head and Neck group. There are as many differing opinions both medical and patient as there are cases of head and neck cancer. A couple of big questions is where located, what type (such as Squamous Cell and sub type such as HPV16+) as well as how extensive for example stage 1. You have stage three which means it is either a large single spot or has invaded nearby areas.
We all try to avoid radiation if we can due to the after effects, particularly in head and neck. There are now drugs that can clear up remains after surgery for some sub types of SSC. Proton Radiation is far more accurate and less destructive to surrounding tissue and body parts. Its also more expensive (not at Mayo but at most centers) and it is usually only in one or two cities in any given state in the US. Photon is done everywhere. You would be surprised.
I can give you my opinion but your doctors would or should know best, provided they have your best interests at heart. Only you can determine that.
Let's see who else pops in here and by the way, you will get much better feedback if you open a Discussion of your own, which lights up on the screen of those who follow the Head and Neck group on connect. Nothing wrong with where you posted, just better results on your own discussion for future posts. It can be kind of complicated for us old guys.
If radiation is the answer, its a fight you can win. Just not a fight anyone would want to have. Courage.

Hello @johnbonani John and welcome to the Head and Neck group. There are as many differing opinions both medical and patient as there are cases of head and neck cancer. A couple of big questions is where located, what type (such as Squamous Cell and sub type such as HPV16+) as well as how extensive for example stage 1. You have stage three which means it is either a large single spot or has invaded nearby areas.
We all try to avoid radiation if we can due to the after effects, particularly in head and neck. There are now drugs that can clear up remains after surgery for some sub types of SSC. Proton Radiation is far more accurate and less destructive to surrounding tissue and body parts. Its also more expensive (not at Mayo but at most centers) and it is usually only in one or two cities in any given state in the US. Photon is done everywhere. You would be surprised.
I can give you my opinion but your doctors would or should know best, provided they have your best interests at heart. Only you can determine that.
Let's see who else pops in here and by the way, you will get much better feedback if you open a Discussion of your own, which lights up on the screen of those who follow the Head and Neck group on connect. Nothing wrong with where you posted, just better results on your own discussion for future posts. It can be kind of complicated for us old guys.
If radiation is the answer, its a fight you can win. Just not a fight anyone would want to have. Courage.

My 67 year old husband was diagnosed with stage 2 tonsil cancer in August, 2022. It was an HPV 16 based cancer so it was very treatable. He had the same treatment plan you mentioned—35 radiation sessions and chemo once a week for seven weeks.

What we learned: do what the doctors tell you to do. For example, get a port put in his chest to make chemo, blood tests and hydration easier. My husband had supplemental hydration sessions three times a week through his port. It hurt a lot to swallow and became impossible after four weeks of treatment. When he lost 15 pounds, they recommended a feeding tube. It sounds scary but it was the best thing he did because he was able to receive badly needed nutrition to help him heal. You may have to try a couple different formulas to find what works best for him. As soon as we got him properly hydrated and fed, he looked so much better and he recovered well. He lost thirty pounds total but has gained some of it back. He had the stomach tube for six weeks. He developed mucositis by the end of treatment. Get him a suction machine to help with this. Our ordeal was about six months from diagnosis to receiving a “no cancer found result” on his PET scan. Permanent side effects - He lost part of his ability to taste food and his salivary glands did not come back. And he cannot grow a full face beard - just a Van Dyke mustache and small chin beard.
He feels this is a small price to pay for being cancer free.

Every two months his ENT scopes his throat for any thing suspicious and his cancer center also follows him closely with scans, MRIs and blood tests.

In 2023, we did three major trips to Panama, Europe, and Australia. So there is life after cancer.

Hang in there, your husband will recover. Take care of yourself.

Was it still hard to eat and swallow a couple weeks after treatment was over?
I just wondered when his mouth wouldn’t be so dry, he rinses with baking soda and salt throughout the day but doesn’t really help, he has to get up in the night to rinse also.

I had stage 4 throat cancer 13 years ago now I have tonsil cancer .
I will need stomach feeding tube to gain weight to be able to endre radiation and chemo.
No worries mate . ENJOY EVERY DAY ...

until thin ....
kelso kelly

Hi all. I've just been diagnosed with stage three tosil 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 sound terrible and my head is spinning. 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, just radiation or combination?

Any input would be greatly appreciated 🙂 - John B

Hello @johnbonani. It is very hard to get hit with this kind of information and try to research and make sense of it and of all things then form a treatment plan. My cancer was ear, not tonsil, but I am still alive 12 years later after surgery, chemo, radiation, and 4 metastases. I have had close contact with a handful of tonsil survivors via an immune therapy clinic I attend. Whether or not your cancer is HPV related or not makes a difference in response to treatment. Surgery was the chosen option for the folks I know, and two of them followed with radiation. Radiation can be tough and leave you with more side effects, though as William said, Proton beam is a much better option where available. The man who chose not to do radiation had a recurrence years later. That said, every person is different, and every treatment protocol can be different and only your own doctor knows what is best for you. Gather information. Ask for a second opinion. Pursue travel to a large referral cancer center or teaching hospital. Consider a video visit for a second opinion. My choices for myself have been surgery first, than whatever is needed after that. Do you have a cancer center close enough to consider travel?

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/

The last month been a nightmare. My husband is 78 and has tonsil cancer. He’s always had good checkups, tests were always good and he’s never sick so this is a shock. Our life now is stressful and we’re scared. The dr said the plan is chemo and radiation to knock this out, he’s stage 2 so they say it’s treatable . I’m so worried.

I know you are worried. This will all take a while to get better. 1000 calories is good if he isn't active. I am sure food, if it tastes at all, doesn't taste good. 7-UP or milkshakes perhaps. He is most likely depressed and feels like crap. I had tea at the Ritz in London since I was in his shoes so life does get better.