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.

Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jan 29 1:24pm
In reply to @cindyc57 "I just would like someone to take me seriously.how do I do that.i have hpv 16.a..." + (show)
@cindyc57

I just would like someone to take me seriously.how do I do that.i have hpv 16.a mass was found on CT scan at the base of my tongue on the right side.i feel it I have small limply like sores under my tongue.the Dr's here have dismissed the mass .they say it doesn't happen.in our area uvdont see it.im being blown off.i have enlarged bumps just on the right side my ear feels full hurts.trouble swallowing food gets stuck .but it doesn't happen I just had cervix removed due to koliocytosis .dysplashia.im very stressed out worry all the time. Under my tongue hurts alot.any suggestions where to go.i see what as an rn I see luekoplasia on sides of my tongue next to all the enlarged bumps.it feels thicker on the right side.im scared I'm reaching out to anyone that can tell me if it is the persistent hpv or precancerous how do I do that plz help

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Hi @cindyc57 and welcome. You should probably go to another facility if you are not getting the help you need where you are. How do you know you have an HPV16+ type SSC mass? How has this been diagnosed and when was the biopsy done?
No one here can diagnose you. We are not doctors, we are patients who have been through or are in the middle of cancer treatments. We will be happy to work with you as you navigate treatment. We can walk with you as you get help but we cannot carry you. Please see a doctor such as an Ear/Nose/Throat doctor and let me know what is going on. In the mean time be concerned but try not to worry as worry never changes the outcome.

REPLY
1 reply
cindyc57 | @cindyc57 | Jan 29 1:59pm
In reply to @hrhwilliam "Hi @cindyc57 and welcome. You should probably go to another facility if you are not getting..." + (show)
@hrhwilliam

Hi @cindyc57 and welcome. You should probably go to another facility if you are not getting the help you need where you are. How do you know you have an HPV16+ type SSC mass? How has this been diagnosed and when was the biopsy done?
No one here can diagnose you. We are not doctors, we are patients who have been through or are in the middle of cancer treatments. We will be happy to work with you as you navigate treatment. We can walk with you as you get help but we cannot carry you. Please see a doctor such as an Ear/Nose/Throat doctor and let me know what is going on. In the mean time be concerned but try not to worry as worry never changes the outcome.

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I no I'm looking for a doctor that isn't disnissive.yes mri .CT showed a mass on the base of my tongue..the leep procedure confirmed the hpv not going away.the ent dr I've seen dismisses it.as doesn't happen how do I go about getting g biopsy.our radiologist has asked for a larynoscope.he just fefuses.its been confirmed several times on pap a hpv testing.its just not going away.as a staff rn.i feel blasted as I know what needs to be done is a biopsy.instead I was given steriods a pcn. Which did not help at all .if nothing else stress will kill me.as my objective stated hpv 16 should not be played with.she has confirmed her side. No I'm not getting answers from him.i worked with him on the floor.he just p. Me off doesn't like rns.all I want is confirmation...is that to much to ask.i do not want carried.just advice.good sound alive its been four yrs a getting worse..I guess I'm lost.

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REPLY
lisek | @lisek | Jan 30 4:00pm
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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Hello Cindy. I agree with the first response. Take your test results and make an appointment with a completely different doctor. An Ear Nose and Throat. Doctor. ASAP!

REPLY
1 reply
rkaspet | @rkaspet | Jan 31 7:28am
In reply to @lisek "Hello Cindy. I agree with the first response. Take your test results and make an appointment..." + (show)
@lisek

Hello Cindy. I agree with the first response. Take your test results and make an appointment with a completely different doctor. An Ear Nose and Throat. Doctor. ASAP!

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I was diagnosed with HPV throat cancer in October 2022. The best decision I ever made was going to the mayo clinic in Rochester. I’m telling you just go down there and have them go through your situation. They diagnosed me having to cancerous tumo and 2 cancerous lymph node left side of my neck ,treatment was decided and I had 35 sessions, radiation, proton treatment and seven chemo treatments .It was a rough time but I Listened to the doctors. I have been cancer, free approximately 14 months!! I have to get checked in March. It was a bit of a rough patch in the beginning. Trust me it will get better! If you have to see your ear nose and throat doctor where you live, let them diagnose you with a biopsy and then decide if you want to get the work done there go ! don’t waste time ,or go to where I suggested. Mayo Clinic is the one of best in the Country Good luck.

REPLY
cris2 | @cris2 | Jan 31 2:42pm
In reply to @stephenrfleury "Keep focused on the prize - beating cancer! Good luck to you both. I mentor (listen..." + (show)
@stephenrfleury

Keep focused on the prize - beating cancer!

Good luck to you both. I mentor (listen and answer non- medical questions)folks here and there. Let me know if you or he or both want to talk.

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He was suppose to have chemo today but his white blood count was low so now have to wait a week. Very disappointing. Did that ever happen to you?

REPLY
1 reply
stephenrfleury | @stephenrfleury | Jan 31 7:33pm
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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@cris 2 It did not, but I don't think it's unusual. For me, the chemo's purpose was to enhance the impact of the radiation.

Send the oncologist a message on the portal and ask him if you should be concerned.

Good luck!

REPLY
1 reply
grammyd | @grammyd | Feb 1 6:31pm
In reply to @cris2 "He was suppose to have chemo today but his white blood count was low so now..." + (show)
@cris2

He was suppose to have chemo today but his white blood count was low so now have to wait a week. Very disappointing. Did that ever happen to you?

Jump to this post

This happened 2 weeks in a row to my husband. It did extend his chemo by 2 weeks at the end. I would make sure your oncologist is aware and see if he/she recommends anything. Blessings!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 2 6:06pm
In reply to @mattbrolly "I had it and went through surgery Jan 23 and radiation feb-March. I have had 3..." + (show)
@mattbrolly

I had it and went through surgery Jan 23 and radiation feb-March. I have had 3 clean scans but have difficulty swallowing and talking because the mass was on my palate as well. A couple surgeries later and the doctor is still trying to fix it. I am not complaining because I am okay and there are so many others fighting.

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Hey Matt,
You might also be interested in this discussion:
- Are there ways to help me swallow better?
https://connect.mayoclinic.org/discussion/anyways-to-help-me-swallow-better/

REPLY
cris2 | @cris2 | Feb 15 2:35pm
In reply to @stephenrfleury "@cris 2 It did not, but I don't think it's unusual. For me, the chemo's purpose..." + (show)
@stephenrfleury

@cris 2 It did not, but I don't think it's unusual. For me, the chemo's purpose was to enhance the impact of the radiation.

Send the oncologist a message on the portal and ask him if you should be concerned.

Good luck!

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Did you have nausea and what helped you, what pills work? My husband been having nausea and takes two kinds of nausea meds, so then he can’t eat.

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2 replies
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Feb 15 3:37pm
In reply to @cris2 "Did you have nausea and what helped you, what pills work? My husband been having nausea..." + (show)
@cris2

Did you have nausea and what helped you, what pills work? My husband been having nausea and takes two kinds of nausea meds, so then he can’t eat.

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If I can jump in here, I too tried five different nausea meds until out of frustration my oncologist put me on Larazepam, which basically fogged me at night so I could rest. Mind you this was for the radiation sickness only as I did not have Chemo at that time. Everyone reacts to radiation differently. Radiation to the head and neck seems far worse than most.
There just isn't a lot to comfort your husband. But remember, this sickness isn't forever, just for a while. By spring things will look better and that's not far away. It isn't a pleasant fight by any means but it does take courage.

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