Squamous Cell Carcinoma of the Tonsil

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Squamous Cell Carcinoma of the Tonsil

by charlie3 on Thu Apr 07, 2011 07:41 PM

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My spouse recently was seen by an Otolaryngologist following a Ct-Scan that showed a suspicious area in the tonsil that is very enlarged, an area in the back of the tongue, and a tumor about the size of an acorn on one side of the neck.  I was surprised that the specialist did not mention possible removal of the one tonsil?  My spouse is scheduled to have a surgical biopsy of the area in question and will be seen by another head and neck specialist in the near future for a second opinion.  I wonder if the second specialist he will be seen by will advise removal of the tonsil? I imagine the surgical biopsy may determine where the main malignancy is stemming from?  So far, the one specialist who examined my spouse only mentioned radiation therapy with chemotherapy as a treatment option. 

RE: Squamous Cell Carcinoma of the Tonsil

by GoldDustWoman on Thu Apr 07, 2011 08:23 PM

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Hi ~

My husband just finished treatment for Stage IV SCC of the tonsil.  His early symptoms were similar to what your spouse has - however my husband had already had his tonsil removed 48 years ago.  The tumor was in the tissue left behind by the tonsil. The tongue growth was benign and the swollen spot in his neck was an involved lymph node rather than a tumor.  

Our doctors (three opinions) all recommended radiation and chemo with surgical removal of the cancerous tissue (both the tonsil bed and a lymph node in the neck) as a last resort.  The surgery involved to remove enough tissue is very difficult and can be disfiguring, so we chose to treat with radiation and chemo instead.  We were also told that it is not always the best thing for the patient to have the involved tissue removed (in our case the lymph node) and long term success is better if it's treated with radiation and chemo instead.

I am only sharing what we were told and what we decided to do and certainly your case may be different.  When they do the biopsy they will likely tell you if the cancer is HPV based.  If it is, consider that a good thing.  HPV based throat cancer is "easier to kill" (our doctor's words) and has a much higher cure rate than if it is not HPV based.  And it's possible that the treatment recommendations may be different for a non-HPV based cancer.

I wish you the best ~ keep in touch with us here.  There are many people who have been on the journey that you are on right now. 

RE: Squamous Cell Carcinoma of the Tonsil

by charlie3 on Thu Apr 07, 2011 09:42 PM

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On Apr 07, 2011 8:23 PM GoldDustWoman wrote:

Hi ~

My husband just finished treatment for Stage IV SCC of the tonsil.  His early symptoms were similar to what your spouse has - however my husband had already had his tonsil removed 48 years ago.  The tumor was in the tissue left behind by the tonsil. The tongue growth was benign and the swollen spot in his neck was an involved lymph node rather than a tumor.  

Our doctors (three opinions) all recommended radiation and chemo with surgical removal of the cancerous tissue (both the tonsil bed and a lymph node in the neck) as a last resort.  The surgery involved to remove enough tissue is very difficult and can be disfiguring, so we chose to treat with radiation and chemo instead.  We were also told that it is not always the best thing for the patient to have the involved tissue removed (in our case the lymph node) and long term success is better if it's treated with radiation and chemo instead.

I am only sharing what we were told and what we decided to do and certainly your case may be different.  When they do the biopsy they will likely tell you if the cancer is HPV based.  If it is, consider that a good thing.  HPV based throat cancer is "easier to kill" (our doctor's words) and has a much higher cure rate than if it is not HPV based.  And it's possible that the treatment recommendations may be different for a non-HPV based cancer.

I wish you the best ~ keep in touch with us here.  There are many people who have been on the journey that you are on right now. 

Hello,  Thank you for your reply today and for all the information you gave us.  I guess the next most important step for my husband will be the surgical biopsy.  However, first we will be going for a second opinion.  At first, my spouse did not believe a second opinion was necessary, however, after speaking with people we know who have survived cancer ... we did seek out another specialist.  I am almost finished recovering from thyroid cancer treatment where I had to have my entire thyroid gland removed followed by radioactive iodine treatments.  I appreciate the information you gave us.

RE: Squamous Cell Carcinoma of the Tonsil ... HPV Based?

by charlie3 on Fri Apr 08, 2011 02:20 PM

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My husband mentioned reading about Squamous Cell Carcinoma of the Tonsil that could be HPV Based.  We have been married for so many years now ... does anyone know if the HPV Based SCC could be at all contagious?  Also, my spouse has anemia which he has had for many years now and has difficulty gaining weight ... he eats a well balanced diet and consumes plenty of calories.  Yesterday, we went to purchase the GNC brand of Hyoperbolic Mass Gainer.  My husband began drinking this vanilla flavored powder mixed with milk and we are hoping that this will help him to gain a few pounds before his radiation and chemotherapy treatments begin.  He also hopes to continue taking this Mass Gainer during the treatments.  I am highly concerned because of his anemia.

RE: Squamous Cell Carcinoma of the Tonsil ... HPV Based?

by Oudave83 on Fri Apr 08, 2011 02:46 PM

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On Apr 08, 2011 2:20 PM charlie3 wrote:

My husband mentioned reading about Squamous Cell Carcinoma of the Tonsil that could be HPV Based.  We have been married for so many years now ... does anyone know if the HPV Based SCC could be at all contagious?  Also, my spouse has anemia which he has had for many years now and has difficulty gaining weight ... he eats a well balanced diet and consumes plenty of calories.  Yesterday, we went to purchase the GNC brand of Hyoperbolic Mass Gainer.  My husband began drinking this vanilla flavored powder mixed with milk and we are hoping that this will help him to gain a few pounds before his radiation and chemotherapy treatments begin.  He also hopes to continue taking this Mass Gainer during the treatments.  I am highly concerned because of his anemia.

Talk to your family doc..after 24 years i wouldn't worry about it.....doubt it is worth it to get a HPV vaccine..still learning allot about HPV/....the great news is the HPV strand is much more curable so you'll be stuck with him 24 more years....LOL.....dd....remember it is the cancer that was tested HPV....not sure that means your husband carries HPV all the time////see, complicated....just focus on the positive here!!!!!  Not sure about the anemia-ask the treatment team...watch for fever and calorie intake....does he have a feeding tube..should you get one-ask them??? Dave

RE: Squamous Cell Carcinoma of the Tonsil ... HPV Based?

by GoldDustWoman on Fri Apr 08, 2011 07:16 PM

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Yes ~ I agree with everything Oudave83 said ~ and I want to add one more thing.  The first thing our doctor told us was not to even for one second worry about the "stigma" of the HPV virus being sexually transmitted.  It can be transmitted by skin to skin contact, it can live in the body for years, they estimate that 80% of the U.S. population has had it, and frankly they just really don't know that much about it yet.  My husband and I have been happily married for 32 years and somehow that HPV got in there and attacked him - who knows when, who knows how, and really who cares?  They really just don't know that much about HPV yet to even figure that out.  I'm just thankful for the one fact that all of our doctors keep saying over and over, that it's the HPV based cancer that is the "easy" one to kill.  They also told us that at least in our area, there's an epidemic of HPV based throat cancer in men in their 50s, just in the last 5 years.  Our ENT, who did the original diagnosis said that for 20 years he never saw one case.  In the last 5 years he sees one a week!  And this is in Omaha, NE - how many do they see in bigger cities!? Something's going on with the HPV thing, and they just haven't figured it out yet.  So talk to your doctors, hope they tell you it's HPV because that's a good thing, and if they do, don't give one second's thought to how it got there.  Just focus on killing it!!!! 

Much love ~  GDW

P.S.  I have thought from the first day of diagnosis that HPV attacked my husband because his immune system was compromised when he had a bone infection two years ago. (He's healthy, the infection came after surgery to repair a broken bone.  One of those hospital infections you hear about on the news.)  I think that HPV was living in him, but his immune system couldn't keep it in check while it was fighting off that other infection.  And interestingly enough, Michael Douglas recently said something similar, that he believes his throat cancer came from being stressed and his immune system not being as strong as a result.  So we're going to spend the rest of our lives keeping my husband's immune system super strong! 

RE: Squamous Cell Carcinoma of the Tonsil ... HPV Based?

by PopPop on Sat Apr 09, 2011 04:19 AM

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charlie3,

Just to add to the posts above. About your husbands weight gain problem. Has he had his Tyroid levels tested? Does he have and over active Thyroid?

After I received my radiation treatments, my Radiation Oncologist warned me that my Thyroid more then likely would give out sooner or later. It wasn't a matter of " If " but more of " When ".

My family Doctor knew what I had been through and always ordered a "TSH" test with my blood work. My Thyroid was fine for nearly  5 1/2 years before it finally gave out. I am now on meds to control the levels and have more energy now. I noticed that even though I wasn't eating any different, I was gaining weight and was more tired. Back on track now.

My Best to Both of You and Everyone Here

RE: Squamous Cell Carcinoma of the Tonsil ... HPV Based?

by charlie3 on Sat Apr 09, 2011 04:40 PM

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Thank you all for your helpful and informative responses.  I am overwhelmed now because as I had mentioned, I am at the tail-end of my recovery from Thyroid Cancer.  My husband and I care for my elderly Mother who has MS and who lives with us for many years now.  My husband has always been physically strong, eventhough he has had the anemia all these years.  I always believed that he was "Superman" because he always exercised and ate well and was never overweight (unlike myself) ... I certainly was not realistic.  Our GP, who is also a friend to us, called today and wants to speed up my husband's surgical biopsy.  Both our GP and Otolaryngologist believe that he does have Squamous Cell Carcinoma of the Tonsil ... the biopsy will tell us what stage the cancer is and hopefully where it is stemming from.  Thank you all for being informative and supportive ... I am extremely worried about our situation now.

RE: Squamous Cell Carcinoma of the Tonsil ... HPV Based?

by lelfrink on Sat Dec 03, 2011 02:31 AM

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Hi. I am at 19 years from treatment of a metatatic one-sided tonsillar SCC. began as a "lump" sensation in the throat then the tonsil gre over 18 months.

any unilateral enlarh]gement of the tonsil is considered malignant until proven otherwise.

Tonsilectomy is the suggested initial procedure.

If the neck cat scan shows enlarged nodes on the same side as the tonsillar lesion then it highly probable he has metastasis.

IF you are not seing an experienced Head and Neck Surgeon then I would advice you to find one. Usually a radiacl neck surgery is done once the diagnosis is confirmed but must be done by a very experienced surgeon; not just any general ENT physician.

IF you have any questions, I will try and provide advice as needed.

IF you have radiation therapy, see if there is anyway to spare the recurrent laryngeal nerves. I have all the bad complications that occur from bilateral neck radiation. They begn to show up 6 years after I finished all therapy. No chemo as it was not an option offered back in the early 90"s.

RE: Squamous Cell Carcinoma of the Tonsil

by dhile on Mon Dec 12, 2011 01:56 PM

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Hi,

I hope your husband is recovering very well and getting back to his "normal" life. How is he doing regarding eating, energy level and gaining back weight?

My husband is 3 months out of treatment with SCC with the primary being his base of tongue and secondary right tonsil.  He had his tonsils at the time of being diagnosed and had his tonsils removed along with various biospys to locate the primary (his tumor was in a single lymph node) which was HPV positive.  After we had met with various specialists, we too choose to treat with radiation (35 treatments) along with 3 infusions of Cisplatin every 3 weeks that was concurrent with his radiation treatments. 

My husband finished his last treatment on Aug. 29th and is doing very well.  It's been a journey as you are well aware.  Steve got hit hard about 3-4 weeks into treatments and especially after his 2nd chemo treatment.  He did loose 30 pounds in total from June when he had his tonsils removed and biospys thru his last treatment in August. 

Steve is doing very well just being 3 months out of treatments (even though he feels he should be back to normal).  His energy level is very good with very little fatigue now, and he is eating very well with healthy portions for breakfast, lunch and dinner.  He still can't tolerate eating any sweets (which he loves).  Some foods trigger the salty taste, but he does not have dry mouth. 

Steve did lose a total of ~30 pounds from his tonsil surgery in June through the end of treatments in August (went from 190 to 160 pounds).  He is doing very well and contintues to impove as the weeks go by.  I continue to encourage him and tell him that every month will be better than the one before.

Did your husband lose weight as well, and if so how long was it before he starting gaining it back? 

Debbie

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