1. < Head & Neck Cancer

Husband diagnosed with tonsil cancer: looking for tips and support

Posted by joy345 @joy345, Jun 24, 2023

I am writing for my husband who was recently diagnose with Tonsil Cancer. He finished the biopsy and PET scan but we do not know what stage is his cancer. The hospital we are in and ENT Dr. will not performed surgery and we were informed by phone of 6 weeks of radiation and 3 cycles of Chemo. We will know details with the oncology and radiology later this week. We will be seeing another Dr. for second opinion.

I feel bad we do not know the stage of his cancer and other details on the treatment. My husband is depressed for this was unexpected. He was told its only inflammation on his lymph nodes and the biopsy confirmed to be SCC(Squamous Cell Carcinoma). As the caregiver, I am hoping this forum/discussions will provide us encouragement and suggestions/help on the treatment he will be having.

I am new to this group.
Thank you for understanding.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

cris2 | @cris2 | Jan 16 7:55am
In reply to @colleenyoung "Such a helpful and descriptive post, @marksur. I'm sure this helps @cris2 and many others. Mark,..." + (show)
@colleenyoung

Such a helpful and descriptive post, @marksur. I'm sure this helps @cris2 and many others.

Mark, how often to you go to Mayo Clinic for followups now?

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My husband just had a few radiation treatments so far and already can’t eat, he has tonsil cancer. No appetite, swallowing is hard. He drinks boost but still not enough. Will see what the dr says today. How to eat when like this, any suggestions?

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2 replies
stephenrfleury | @stephenrfleury | Jan 16 9:02am
In reply to @cris2 "The last month been a nightmare. My husband is 78 and has tonsil cancer. He’s always..." + (show)
@cris2

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.

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Mayo has a dietician in the oncology department that provided a lot of good information to us. Protein, caloriesmand lots of liquid are key.

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1 reply
jonesja | @jonesja | Jan 16 5:22pm
In reply to @cris2 "My husband just had a few radiation treatments so far and already can’t eat, he has..." + (show)
@cris2

My husband just had a few radiation treatments so far and already can’t eat, he has tonsil cancer. No appetite, swallowing is hard. He drinks boost but still not enough. Will see what the dr says today. How to eat when like this, any suggestions?

Jump to this post

I could hardly eat anything during treatment. I lived on creamy mashed potatoes with butter. Cottage cheese. Egg’s anyway cooked, peanut butter and jelly , banana , power shakes with powdered supplements and boost , apple sauce, baby food jars, soups and noodles, Boost/ ensure cans pack a lot of good calories. I had to FORCE myself to eat. Salt throat rinse several times a day helps.Ask you Doctor about Magic mouthwash. It DOES get better a month or so after treatment. He is in a tough battle but it is winnable.

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1 reply
cris2 | @cris2 | Jan 16 7:16pm
In reply to @jonesja "I could hardly eat anything during treatment. I lived on creamy mashed potatoes with butter. Cottage..." + (show)
@jonesja

I could hardly eat anything during treatment. I lived on creamy mashed potatoes with butter. Cottage cheese. Egg’s anyway cooked, peanut butter and jelly , banana , power shakes with powdered supplements and boost , apple sauce, baby food jars, soups and noodles, Boost/ ensure cans pack a lot of good calories. I had to FORCE myself to eat. Salt throat rinse several times a day helps.Ask you Doctor about Magic mouthwash. It DOES get better a month or so after treatment. He is in a tough battle but it is winnable.

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Thanks, real helpful.

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cris2 | @cris2 | Jan 19 5:31pm
In reply to @stephenrfleury "Mayo has a dietician in the oncology department that provided a lot of good information to..." + (show)
@stephenrfleury

Mayo has a dietician in the oncology department that provided a lot of good information to us. Protein, caloriesmand lots of liquid are key.

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Did you ever have to go and get iv hydration, my husband has to for three days and not happy about it, he’s tired of running places when he doesn’t feel good.

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1 reply
stephenrfleury | @stephenrfleury | Jan 19 6:17pm
In reply to @cris2 "Did you ever have to go and get iv hydration, my husband has to for three..." + (show)
@cris2

Did you ever have to go and get iv hydration, my husband has to for three days and not happy about it, he’s tired of running places when he doesn’t feel good.

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I never had IV hydration, but twice I passed out at home due to hydration issues. Luckily, I did not hurt myself when I fell. It was tough as my wife was unable to get me up. After the second time, we got a walker and kept it handy so I didn't have to worry about falling. It was quite a relief to my wife, Suzy .

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cris2 | @cris2 | Jan 19 6:18pm
In reply to @stephenrfleury "I had SCC on the base of my tongue and a couple of lymph nodes in..." + (show)
@stephenrfleury

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/

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Did you ever have to have hydration treatment, my husband has to go for three days and he thought he was drinking enough, guess not.

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mattbrolly | @mattbrolly | Jan 20 9:04am
In reply to @cris2 "My husband just had a few radiation treatments so far and already can’t eat, he has..." + (show)
@cris2

My husband just had a few radiation treatments so far and already can’t eat, he has tonsil cancer. No appetite, swallowing is hard. He drinks boost but still not enough. Will see what the dr says today. How to eat when like this, any suggestions?

Jump to this post

Make smoothies with protein powder, even with weight gainer protein. And plenty of milkshakes. Very helpful in keeping my weight stable and even gain weight. Good luck to you. Keep a positive attitude, it really helps! God bless!

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1 reply
sapphire1158 | @sapphire1158 | Jan 21 8:35am
In reply to @hrhwilliam "HPV 16+ is a highly treatable variant, often with mild(er) Chemo and/or/or not radiation. Not that..." + (show)
@hrhwilliam

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.

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I was interested- glad to see you mentioned that sometimes no radiation is part of the protocol- I had the HPV-16 cancer in tonsil and 1 lymph node - in April 2023- I had both tonsils removed with the one with cancer being a radical tonsillectomy- along w a right neck dissection to remove the one lymph node- this was at mayo - they said stage one no radiation but the NAVars blood test every 3 months for 2 years— I keep getting feedback - questions from well meaning friends questioning why I did not have radiation!
I will check again w my dr on my next follow up-on this site it seems most people get radiation- so makes me a bit nervous!!

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1 reply
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jan 21 9:22am
In reply to @sapphire1158 "I was interested- glad to see you mentioned that sometimes no radiation is part of the..." + (show)
@sapphire1158

I was interested- glad to see you mentioned that sometimes no radiation is part of the protocol- I had the HPV-16 cancer in tonsil and 1 lymph node - in April 2023- I had both tonsils removed with the one with cancer being a radical tonsillectomy- along w a right neck dissection to remove the one lymph node- this was at mayo - they said stage one no radiation but the NAVars blood test every 3 months for 2 years— I keep getting feedback - questions from well meaning friends questioning why I did not have radiation!
I will check again w my dr on my next follow up-on this site it seems most people get radiation- so makes me a bit nervous!!

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I am curious why you were not put on a course of Keytruda or similar. This current track sounds as though if the cancer comes back they will try something else rather than insuring the cancer has no chance to come back.

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