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.

@hornb

I did 35 myself for same ailment and have had 2 ENT surgeons tell me they are finding out that is overkill. That 3-4 weeks is suffice. Maybe w the chemo you still must do 35. I had surgery to remove tumor and was told there was an 83% or so chance it would not come back with the operation only. I added the radiation to boost that chance to 90-92%.

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I was told above 90% mine would not come back so I'm sitting tight for now. ENT does not want to do anything we don't need to do but I must admit it's scary. It was a very tough decision to make but I do trust my team.

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@sapphire1158

Update to my above post - saw my mayo surgeon yesterday- he explained each case - HPV - tumor area is different - in my case got clean margins in the radical tonsillectomy- I had one affected lymph node- they removed 42- all clear -
Sooo- thank goodness no radiation- NAVars test every 3 months for 2 years w a physical examination every 3 months.
I felt much better after discussing all my concerns w my physician.
I was very fortunate to have excellent surgeons and also ones that’s communicate and continue to communicate with me about protocols going forward. Reading this sight gave me good info to discuss with and ask questions about with my physician.

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same situation! Each person is different.

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@hrhwilliam

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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This statement is rather negative. Treatments are changing and each person is different. Poster said surgery and clear margins. Understand trying to help etc . The doctors know best for each person.

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@ccancer12

This statement is rather negative. Treatments are changing and each person is different. Poster said surgery and clear margins. Understand trying to help etc . The doctors know best for each person.

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Cancer is rather negative as well. Most cancers have a root cause. They don’t happen by chance. When the cancer cells are removed by surgery this may not or likely does not remove the root cause.
Most of the time our immune system handles cancers and keeps them from developing into dangerous masses. Today we have medicines which have been vetted to destroy the virus that causes SSC HPV16+ as well as several other common cancers.
Statistically half of all doctors are below average. With that in mind I simply asked what was the thinking here with surgery only. I am trying to understand.
Oh, by the way, I see that you are new here to the Head and Neck group. Welcome. As you see, we are fighting for our lives here at times. We are trying to learn what we can from each other as most often our medical care teams have never actually experienced what we go through. MS patients often say “You don’t get it until you get it.” Same can be said for the after effects of radiation treatment to the head and neck.
I am a barking dog sometimes but my goal is to be a calm horse with what I learn. Forgive my methods.

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@hrhwilliam

Cancer is rather negative as well. Most cancers have a root cause. They don’t happen by chance. When the cancer cells are removed by surgery this may not or likely does not remove the root cause.
Most of the time our immune system handles cancers and keeps them from developing into dangerous masses. Today we have medicines which have been vetted to destroy the virus that causes SSC HPV16+ as well as several other common cancers.
Statistically half of all doctors are below average. With that in mind I simply asked what was the thinking here with surgery only. I am trying to understand.
Oh, by the way, I see that you are new here to the Head and Neck group. Welcome. As you see, we are fighting for our lives here at times. We are trying to learn what we can from each other as most often our medical care teams have never actually experienced what we go through. MS patients often say “You don’t get it until you get it.” Same can be said for the after effects of radiation treatment to the head and neck.
I am a barking dog sometimes but my goal is to be a calm horse with what I learn. Forgive my methods.

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@hrhwilliam I hear what you are saying. I'm wrestling with this exact thing. Chemo was deemed out for me and with radiation I was told they would watch me. They did a CT which was clean and I'll do PET CT at 12 weeks. Based on pathology, everyone seems confident of this path. But I'll say it does concern me. The logic used was that at my age of 45 and based on the pathology, it would be wise to try and do observation at this time. But you don't know what you don't know so I'm putting a lot of trust in my doctors. Been reading a lot of studies on the topic and it seems like there is disagreement amongst the various areas. The surgeons seem to want to try surgery only in low stage cases but radiology wants to continue with decreased radiation on those cases. So far, radiation is proving to be the safe way to go as it pertains to recurrance. But there are solid surgery only groups as well. Ugh makes my head spin lol

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@brad78

@hrhwilliam I hear what you are saying. I'm wrestling with this exact thing. Chemo was deemed out for me and with radiation I was told they would watch me. They did a CT which was clean and I'll do PET CT at 12 weeks. Based on pathology, everyone seems confident of this path. But I'll say it does concern me. The logic used was that at my age of 45 and based on the pathology, it would be wise to try and do observation at this time. But you don't know what you don't know so I'm putting a lot of trust in my doctors. Been reading a lot of studies on the topic and it seems like there is disagreement amongst the various areas. The surgeons seem to want to try surgery only in low stage cases but radiology wants to continue with decreased radiation on those cases. So far, radiation is proving to be the safe way to go as it pertains to recurrance. But there are solid surgery only groups as well. Ugh makes my head spin lol

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which solid surgery only groups ? Do you mean reading online in groups ? I understand its hard to know if surgery is enough even though some fantastic surgeons and pathologists are confirming that route for now with check ups etc.

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@ccancer12

which solid surgery only groups ? Do you mean reading online in groups ? I understand its hard to know if surgery is enough even though some fantastic surgeons and pathologists are confirming that route for now with check ups etc.

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So I was referring to the conclusion data in some studies amongst those who received surgery only. There are good numbers meaning the surgery only group is showing strong success depending on the individual circumstances such as low stage and node involvement. In the end, the jury seems to kind of still be out but there is hope I think that therapy will de-escalate over time with this specific cancer. But I find myself dwelling on the 10 or so percent that can get me lol

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@brad78

So I was referring to the conclusion data in some studies amongst those who received surgery only. There are good numbers meaning the surgery only group is showing strong success depending on the individual circumstances such as low stage and node involvement. In the end, the jury seems to kind of still be out but there is hope I think that therapy will de-escalate over time with this specific cancer. But I find myself dwelling on the 10 or so percent that can get me lol

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Yes I am in the same situation as you

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@brad78

@hrhwilliam I hear what you are saying. I'm wrestling with this exact thing. Chemo was deemed out for me and with radiation I was told they would watch me. They did a CT which was clean and I'll do PET CT at 12 weeks. Based on pathology, everyone seems confident of this path. But I'll say it does concern me. The logic used was that at my age of 45 and based on the pathology, it would be wise to try and do observation at this time. But you don't know what you don't know so I'm putting a lot of trust in my doctors. Been reading a lot of studies on the topic and it seems like there is disagreement amongst the various areas. The surgeons seem to want to try surgery only in low stage cases but radiology wants to continue with decreased radiation on those cases. So far, radiation is proving to be the safe way to go as it pertains to recurrance. But there are solid surgery only groups as well. Ugh makes my head spin lol

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Hi Brad. It seems like such a dilemma sometimes, to know what the best course is. I guess it really boils down to you being your own best advocate when it comes to your healthcare..
Personally I am wishing for the day when we can completely get away from radiotherapy and on to some medicine that cleans it all up. We are almost there now and the strides made just in the last few years are amazing. Radiation has caused me more problems than most people could ever imagine. I'm still alive 23 years out but it has been a fight at times.
Hope things work out well for you. I was about your age when I went down the rabbit hole. I wish no one would ever have to join this club. Good healing.

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@ccancer12

which solid surgery only groups ? Do you mean reading online in groups ? I understand its hard to know if surgery is enough even though some fantastic surgeons and pathologists are confirming that route for now with check ups etc.

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Hey @ccancer12 , what is your story? What are you going through or is it someone close to you? You have no biography on record so it makes it hard to understand where you are coming from. You could be someone who has lost someone, or a drug company spokesperson, or starting treatments, ten years out with issues, voodoo specialist, something else. Hope you respond.

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