Stage 2 Tonsillar Squamous Cell Carcinoma

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Stage 2 Tonsillar Squamous Cell Carcinoma

by Karencamp on Mon Sep 13, 2010 10:00 PM

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Hello,

My husband was diagnosed in June with tonsillar cancer.  He had it removed in July along with a neck dissection.  He is scheduled to start radiation on the 27th of this month. 

We are very lucky that he found this so early.  I'm reaching out to see if anyone else has found it early and gone through treatment.  Every survivor we speak with has been stage 4 and have gone through combination chemo/radiation therapy.  I understand the treatment is hell. 

Is there anyone out there who only had stage 2 and did surgery followed by only radiation on one side?  i just want to understand what I should expect for side affects.  I know it's not easy, but I think the stories we have heard from stage 4 patients are worse.

Thanks,

Karen

RE: Stage 2 Tonsillar Squamous Cell Carcinoma

by steph_rn on Tue Sep 14, 2010 03:14 AM

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Hi Karen..........

I had a neck dissection and radiation.......no chemo.  Still no picnic!  The radiation is the hellish part of the treatment.

I had tonsillar cancer on the lingual tonsil on base of tongue with 1 lymph node involvement.

I weathered the treatment fairly well......I'm 2 years out of treatment.  Taste mosty back, swallowing is not much of a problem, and have plenty of saliva.

But the radiation was the worst 7 weeks of my life.

Steph

RE: Stage 2 Tonsillar Squamous Cell Carcinoma

by PopPop on Tue Sep 14, 2010 03:38 AM

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Karen,

I am like Steph, had the radical neck disection, part of my tongue removed and 30 radiation treatments. Chemo was kept as a safety net in the case of reoccurance.

As Steph mentioned, the radiation is pretty rough, due to the loss of saliva, and sores in the mouth. Your husband will loose his taste buds in the first week and food will taste like cardboard and fluids will taste like aluminum. But, he most continue to eat as much as possible to maintain his weight and nutrition.

There are medicines to help him with any pain that he might experience. There are also a few little home remedies that can also help, like the Keri lotion applied daily after the daily radiation treatment. Helps keep the skin soft and moist. Also, the Baking Soda and Salt solution that he can use to rinse and gargle with to take the edge off of the irratation of the sores. If the sores get too much for him, there is a " Magic Mouthwash" the Doctors can prescribe along with pain meds.

He can do this and he may need to lean on you during this time. So, as a Caregiver/ Angel, you also have to take care of Yourself as well.

My Best to Both of You and Everyone Here

RE: Stage 2 Tonsillar Squamous Cell Carcinoma

by Karencamp on Tue Sep 14, 2010 11:28 AM

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Thank you Steph.  Congratulations to you!  We are dealing with only the tonsil - the lymph nodes were thankfully all clean.  I know the treatment is going to be rough - I was hoping maybe not as bad as I had heard.  I'm prepared to do whatever I need to do to take care of him. 

Take care of yourself and God bless. 

Karen

RE: Stage 2 Tonsillar Squamous Cell Carcinoma

by Karencamp on Tue Sep 14, 2010 11:32 AM

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Thank you for the advice.  I am looking into taking a leave of absence from work as I feel I will need to be here for him.

Stay healthy and strong - anyone who has had to go through this is amazing.

Best wishes for continued recovery.

Karen

 

RE: Stage 2 Tonsillar Squamous Cell Carcinoma

by steph_rn on Tue Sep 14, 2010 03:41 PM

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He will be fine for the first 3 weeks, Karen.  And I went back to work 3 weeks after treatment............part time at first.  I drove myself to treatment every day and was living alone at that time.  Most likely, he will spend allot of time sitting on the couch watching TV, or napping.  Fixing him food will really not be an issue............I existed on Carnation Instant Breakfast made with whole milk and ice cream 2 - 3 times a day.  Anything else repulsed me. I did not have a feeding tube....glad I didn't, but it would have made live easier if I had had one.  Managed to stay alive.........lost 40 pounds, have gained 20 back.  Was able to swallow the meds that I really had to have, skipped the others.

Everyone has a different experience..........since your hubby has no node involvement, the radiation will probably be less extensive............

I'd hold off on the leave of absence from work...........he most likely will be ok by himself during the day.  And you can pamper him on the weekends. (Just my opinion)  When we hear "cancer".........and radiation........we assume that the patient is incapacitated to the point of helplessness.  I did not find this to be the case...........I wasn't happy, but I was functioning!

Take care...............Steph

 

RE: Stage 2 Tonsillar Squamous Cell Carcinoma

by Oudave83 on Tue Sep 14, 2010 04:23 PM

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On Sep 13, 2010 10:00 PM Karencamp wrote:

Hello,

My husband was diagnosed in June with tonsillar cancer.  He had it removed in July along with a neck dissection.  He is scheduled to start radiation on the 27th of this month. 

We are very lucky that he found this so early.  I'm reaching out to see if anyone else has found it early and gone through treatment.  Every survivor we speak with has been stage 4 and have gone through combination chemo/radiation therapy.  I understand the treatment is hell. 

Is there anyone out there who only had stage 2 and did surgery followed by only radiation on one side?  i just want to understand what I should expect for side affects.  I know it's not easy, but I think the stories we have heard from stage 4 patients are worse.

Thanks,

Karen

Hi Karen,

I am gonna stand on all the wonderful,, amazing advise of these great people...you have come to the right place for knowledge and due diligence, for strength, peace, comfort and rest.  I will be praying for you and your husband in the days ahead and particularly on Sept. 27th, 2010.  We are hear for you and your husband and family.  Please let us know how we might help you in the interim.  You are gonna do this-YOU CAN DO THIS FOR SURE-hang in there!!!!!  One day at a time.....one week at a time.....

Best wishes,

Dave

oudave83

 

RE: Stage 2 Tonsillar Squamous Cell Carcinoma

by phil777 on Sat Mar 16, 2019 04:27 PM

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Hi everyone, I do hope you are all well and would love to hear gfrom all you guys who wrote on this thread if possible.

 

My Story is this. On 13th February 2019 I had my tonsils removed. I also had a growth in my throat/base of tongue removed as well as the abnormal channel thing in my mouth also removed.

 

On 27th February 2019 I was told that I have stage 2 Squamous cell carcinoma of the right tonsil.

 

I had an MRI scan & a CT this week again, last time was in November 2018.

 

On 13th March I was told that I will need Chemoradiotherapy for carcinoma of the right tonsil for 5-6 weeks. So a combined treatment.

 

On the 14 March I had to have an ultrasound even though I had one 2 weeks ago. However this time I also had to have a FNA. After the scan the radiologist told me the result was in the middle or in other words No. 2 between 1-3. Hopefully I’ll find out more on Monday.

 

From what I’ve read here others seem to have had radiotherapy only so I’m wondering if it’s different where you guys are? I’m in the UK.

 

I have an appointment to see an oncologist on Friday to be told about the suggested treatment and I don’t mind telling you all that I am absolutely totally terrified beyond belief.

 

I hope to hear anything from you guys.

 

Thank you for reading

 

Phil

RE: Stage 2 Tonsillar Squamous Cell Carcinoma

by Sdurnell on Sun Mar 17, 2019 01:02 AM

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Phil,

Most of us have radiation and chemo both.  But it depends on the staging of your cancer, how it presents, whether you have surgery and what kind, biopsy and pathology results, and other factors.  Staging has also quite recently changed, so it's good you give us the details of your case.  Those of us who had cancer in the past will understand that better, as our staging was very different (hardly anyone was diagnosed in the past before stage III.)  The stage II cancer you are reading about on this thread would not be called stage II anymore, so you are comparing apples to oranges.

I had radiation only, and now that more people are showing up with HPV-related tumors, rather than those caused by tobacco use, it has been discovered that those cancers respond better to a bit less treatment.  So things are changing.  But they never found my primary and got all the cancer in my lymph nodes (only one was affected, and it was encapsulated).

If you have both base of tongue and tonsil involvement your case seems a bit more complicated than some.  Do you have any metastases to the lymph nodes?

Most of the worst side effects come from radiation, so you are bound to get those no matter what.  But chemo can add its own.  Most are temporary, but there is a possiblilty of hearing loss of neuropathy;  be sure you ask about the type of chemo they want to use and what its effect may be.

Radiation is brutal, but we do survive.  Your life will be upended for the duration of treatment and for perhaps a year afterward.  The side effects continue to worsen for at least a couple of weeks after radiation ends, and then they get better, but only very, very slowly.  I had terribly poor saliva output for a few years, and didn't begin to get my sense of taste back for about a year, for instance.  I am eight years out, and my life, with some minor exception, is as good as it was.

Some people manage to get through wihout a feeding tube, and a few have even worked throughout treatment, but most of us can't do either.  I tried to do without, but had to have one placed during treatment, so you can change your mind about it.

I recommend that you peruse some other threads here.  Maybe you can find other cases more like your own.  If you ask your doctors about the older staging that might help, or you can research it on the net.

Best of luck to you.

Susan

RE: Stage 2 Tonsillar Squamous Cell Carcinoma

by phil777 on Thu Mar 21, 2019 12:58 PM

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On Mar 17, 2019 1:02 AM Sdurnell wrote:

Phil,

Most of us have radiation and chemo both.  But it depends on the staging of your cancer, how it presents, whether you have surgery and what kind, biopsy and pathology results, and other factors.  Staging has also quite recently changed, so it's good you give us the details of your case.  Those of us who had cancer in the past will understand that better, as our staging was very different (hardly anyone was diagnosed in the past before stage III.)  The stage II cancer you are reading about on this thread would not be called stage II anymore, so you are comparing apples to oranges.

I had radiation only, and now that more people are showing up with HPV-related tumors, rather than those caused by tobacco use, it has been discovered that those cancers respond better to a bit less treatment.  So things are changing.  But they never found my primary and got all the cancer in my lymph nodes (only one was affected, and it was encapsulated).

If you have both base of tongue and tonsil involvement your case seems a bit more complicated than some.  Do you have any metastases to the lymph nodes?

Most of the worst side effects come from radiation, so you are bound to get those no matter what.  But chemo can add its own.  Most are temporary, but there is a possiblilty of hearing loss of neuropathy;  be sure you ask about the type of chemo they want to use and what its effect may be.

Radiation is brutal, but we do survive.  Your life will be upended for the duration of treatment and for perhaps a year afterward.  The side effects continue to worsen for at least a couple of weeks after radiation ends, and then they get better, but only very, very slowly.  I had terribly poor saliva output for a few years, and didn't begin to get my sense of taste back for about a year, for instance.  I am eight years out, and my life, with some minor exception, is as good as it was.

Some people manage to get through wihout a feeding tube, and a few have even worked throughout treatment, but most of us can't do either.  I tried to do without, but had to have one placed during treatment, so you can change your mind about it.

I recommend that you peruse some other threads here.  Maybe you can find other cases more like your own.  If you ask your doctors about the older staging that might help, or you can research it on the net.

Best of luck to you.

Susan

Thank you for your reply and information Susan.

 

I’m rather confused when you say....The stage II cancer you are reading about on this thread would not be called stage II anymore, so you are comparing apples to oranges.

 

What exactly do you mean as I’m totally confused?

 

I just found out that mine is HPV related and so positive

 

I wont find out if lymph nodes are affected until tomorrow.

 

Please can you explain the older staging?

 

Regards,

 

Phil

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