Husband diagnosed with tonsil cancer: looking for tips and support

Hello. It is hpv 16+, he had more test and check ups, since it was Xmas it will start after new year. It’s so much waiting, I’m afraid the cancer will get worse. We go to the radiation dr tomorrow for the plan. They will start off with chemo once at the start, in middle and end, radiation every day for 39 visits. So much to take in. It is tonsil cancer and lymph nodes in neck. Thanks for replying.

I was diagnosed with HPV 16+cancer of base of tongue March 2023. I had TORS surgery to remove tumor and lymph nodes through right neck dissection. 2 of which had cancer. I am 57. 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. Currently I am 160 days post 30 rounds of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I opted out of any Chemo treatment. 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. If you have a Speech therapist they can help you with this. It was a struggle to eat during radiation and I FORCED myself. He will lose appetite and everything has no taste. However as far as today. I can eat and drink about anything I want. My taste buds are about 50% and seem to be coming back . My throat mucositis has almost gone away and Saliva production is slowing getting better. My stamina is back to about 80% . I will have a throat scope and CT scan every 3 months for two years. He 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 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.

Thanks for all that. This is just starting so we’re both scared. Like I said in post he never been sick, not even a headache so he’s not use to having anything go wrong, so it’s really hard. This is going to be a long winter, we’re in Michigan.

We live in Colorado, so we understand long winters. My husband was also the picture of health, had all his original parts, and never had to have a surgical procedure for anything, so putting in the port and the feeding tube were scary for him. But we focused on how this would help him. Every person is different. Your husband may not have the side effects my husband had. But ask a lot of questions and do everything you can to make him more comfortable as problems arise.

It sounds like you need to find a way to manage your fears. I found that I had to stay in the present to keep my fears at bay. Do you have any family members nearby for support? Or support from your church if you have one? We had no family nearby but our neighbors and friends were wonderful once they knew our situation. Also, having a lot of people sending John cards and email messages helped keep our spirits up.

Remember, your doctor said this is very treatable. That is really positive news for a newly diagnosed cancer patient. Focus on that, and let people know what is happening so they can give you emotional support.

Thank you. We have some family close by, they will help out. Right now my husband really doesn’t want to talk to anyone. The drs been great and real encouraging. How old is your husband, I know it would be a lot easier on a younger man, so at 78 he’s scared to go through all this.

HPV 16+ is a highly treatable variant, often with mild(er) Chemo and/or/or not radiation. Not that any cancer is good cancer. This variant was only discovered twenty two years ago and it took some time to get oncologists up to speed on this with some even today not understanding the differences. The fact that your people tested for this means they are on the right page.

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/

I read your story and your wife’s post, very helpful. You been through a lot, I hope my husband will be as strong as you. It’s harder as he’s older, so hope it goes smoothly. He already says he doesn’t want the feeding tube, we’ll have to see. Thanks.

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I am glad the blog helped you. I really fought the feeding tube, but at the end of the day, if it gives you a better chance to survive, go for it.

For me, it was really difficult to get the 120 grams of protein and 2500 calories required each day!