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tonsil cancer afraid..

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tonsil cancer afraid..

by kevincolangelo on Mon Oct 07, 2013 11:21 PM

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I am 56 and live in NY got a MRI and showed 2.6cm mass in right tonsil;

Got both tonsils removed last week....still recovering.

Had x rays and blood work all show no other signs of spread...my lymph glands in my neck were not even swollen just my tonsil pre op;

Now results came back its Squamous Cell;

But there a few cells left in there as surgery did not remove them all.....also it comes back it is the agressive type of class of cell..the nasty one - do not know what they mean;

Next step is see a specialist to determine what to do;

Then a PET scan to see if any other signs....

My doctor is hopeful we can get rid of it as it shows only local in the tonsil area;

My question as everyone knows is whats my chances of surviving this or whats my chances of losing my life within the future?

I know it sounds corny and no one can give me an answer but your comments may help and your statistics and your advice as pople who have had this and survived - has many people died with this or is the survival rate high?

I thank you...

RE: tonsil cancer afraid..

by bruce63 on Tue Oct 08, 2013 12:52 AM

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I AM SORRY THAT YOU ARE AFRAID. ALL OF US HAVE BEEN AT THAT STAGE EARLY ON. THROUGH THE RESEARCH YOU WILL UNDOUBTEDLY DO YOU'LL DISCOVER THAT SQUAMOUS CELL CANCER IN THAT AREA IS VERY SUCCESSFULLY DEALT WITH. OF COURSE WE ARE ALL DIFFERENT BUT FROM THE NUMBER OF PATIENTS, SURVIVORS, AND CARE GIVERS ON THIS SITE YOU FIND THAT VAST MAJORITY OF US ARE STILL HERE. MANY OF US BEGAN TREATMENT AT STAGE IV. DON'T LET THE NUMBERS SCARE YOU. PREPARE YOURSELF FOR A FIGHT YOU CAN WIN. CHOOSE A TEAM THAT WILL WORK WITH YOU AND GIVE YOU THE SUPPORT YOU REQUIRE.

PRAYERS TO YOU

BRUCE

RE: tonsil cancer afraid..

by PopPop on Tue Oct 08, 2013 12:55 AM

Quote | Reply

Kevin,

I am sorry that you have to be here asking such questions, but you have found a good site to ask these questions. I would like to suggest that you take a deep breath for a moment. I am sure your head is running at Warp speed....

There will be others here soon that have traveled the same road that you are about to take and will answer your questions. My cancer was Base of Tongue cancer and I had surgery 9 years ago this week. I had some lymphnodes involved so I had surgery followed by radiation, the Surgeon and Radiation Onclogist stated that they wanted to keep Chemo as a backup.

You asked the question as to how long you will survive, well no one can really give you a solid answer on that, but as I mentioned, I am 9 years out. My neighbor down the street had tonsil cancer 7 years prior to me having BOT so he is now 16 years out and is self employed, still goes to work everyday.

Once your tests are completed, the Doctors will put together a plan of attack. The combination of Surgery, Radiation, and Chemo all depend on the Staging and the patient's final decisions.

One suggestion that some others may also agree on is to try not searching on the survival rates, as allot of the data out there is 5-10 years old. Easier said then done, I did it myself. You can do this, a bit bumpy ride ahead, but come here with questions, or vent when you need to.

My Best to You and Everyone Here

 

RE: tonsil cancer afraid..

by kevincolangelo on Tue Oct 08, 2013 01:09 AM

Quote | Reply

thank you for supporting me and your kind word;

I am a smoker too - I should stop right?

RE: tonsil cancer afraid..

by bruce63 on Tue Oct 08, 2013 01:23 AM

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KEVIN,

THE SCARE OF WHAT'S AHEAD CAN HELP YOU QUIT. I CAN TELL THAT ONCE YOU BEGIN TREATMENT SMOKING IS GOING TO THE FARTHEST THING FROM YOUR MIND. SMOKING WILL IRRITATE YOUR THROAT DURING TREATMENT, YOU WILL NOT NEED ANY FURTHER IRRITATIONS. BY THE TIME YOU ARE FINISHED IT'S UP TO YOU TO PUT THE CIGARETTE DOWN FOR GOOD.

BRUCE

RE: tonsil cancer afraid..

by Sdurnell on Tue Oct 08, 2013 01:32 AM

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Hi Kevin.

You should definitely stop smoking!  And any other form of tobacco use, if any.  And never take it up again.  I know it may be especially difficult right now, but it is essential if you want a good outcome, and I know you do!  Get a patch, an e-cigarette, gum, hypnosis, whatever will work for you and your doctors will allow.  Do it sooner rather than later.  You life could be on the line.

OK, that rant over, you should know that head and neck cancer--squamous cell carcinoma--is one of the more curable ones.  I am nearly three years from diagnosis, and have had clear PET scans twice a year since them--no evidence of disease (NED).  I was stage III, and my treatment was surgery followed by radiation.  

Most head and neck cancers are discovered at stage III or IV, and they are still usually curable.  This is because they usually metastasize to the lymph nodes first, and are discovered before they go farther.  I have no lymph nodes on the left side of my neck, and hardly miss them at all!

Your initial post sounds very anxious.  Please make a list of all your questions and ask your doctors.  Make sure you have doctors whom you trust and who will answer everything.  It's good to come here too, but we don't and can't know your specific case as well as your doctors do, and we are not really qualified to give medical advice anyway.  We can tell you what we experienced and what our doctors have told us, and maybe help you formulate your questions.

Gather a support system around you, as you will need help getting through this.  Let folks help you as things progress.  And always come here with any and all questions, or even rants, because no one will understand the way we do.

Best of luck to you!

Susan

RE: tonsil cancer afraid..

by kevincolangelo on Tue Oct 08, 2013 02:30 AM

Quote | Reply

so those two lumps one each side of my neck under my jaw are lymph nodes?

they were not enlarged at any time before surgery or is there any signs on MRI pre sugery that any cancer had spread to those areas...

RE: tonsil cancer afraid..

by bruce63 on Tue Oct 08, 2013 12:52 PM

Quote | Reply

GOOD MORNING,

I CAN SENSE THAT YOUR MIND IS IN WARP DRIVE. ALLOW THE PROFESSIONALS TO DO THEIR JOB. I WAS FORTUNATE THAT AND OLDER MD WAS ABLE TO PALPATATE AND FIND A BB SIZED GROWTH UNDER MY JAW. BY THE TIME I GOT INTO TREATMENT THE GROWTH WAS THE SIZE OF A MARBLE. NO SURGERY WAS REQUIRED. I OPTED FOR AN INTENSE TREATMENT THAT REQUIRED 70 RADS AND 10 DAYS OF CISPLATION. THE GROWTH MAGICALLY DISAPPEARED  WITHIN THE FIRST 2 WEEKS OF TREATMENT. KEEP IN MIND THAT THERE ARE MANY APPROACHES TO TREATMENT. YOU WILL HAVE SOME OPTIONS ONCE A COMPLETE WORK-UP HAS BEEN DONE. GIVE YOUR TEAM THE TIME TO DO IT RIGHT.

BRUCE

RE: tonsil cancer afraid..

by Dlynn1210 on Tue Oct 08, 2013 02:03 PM

Quote | Reply

On Oct 07, 2013 11:21 PM kevincolangelo wrote:

I am 56 and live in NY got a MRI and showed 2.6cm mass in right tonsil;

Got both tonsils removed last week....still recovering.

Had x rays and blood work all show no other signs of spread...my lymph glands in my neck were not even swollen just my tonsil pre op;

Now results came back its Squamous Cell;

But there a few cells left in there as surgery did not remove them all.....also it comes back it is the agressive type of class of cell..the nasty one - do not know what they mean;

Next step is see a specialist to determine what to do;

Then a PET scan to see if any other signs....

My doctor is hopeful we can get rid of it as it shows only local in the tonsil area;

My question as everyone knows is whats my chances of surviving this or whats my chances of losing my life within the future?

I know it sounds corny and no one can give me an answer but your comments may help and your statistics and your advice as pople who have had this and survived - has many people died with this or is the survival rate high?

I thank you...

Hi Kevin -

First, I will address the smoking.  Most diagnosed with tonsil cancer are reportedly men who are, or have been, smokers, which tells you something.  Second, I lost my husband to lung cancer.  He was a smoker from 14 years old to 59 years old.  I often asked him to stop but his response was, "Everyone has to die someway sometime".  He was a Marine (once a Marine, always a Marine) and could handle anything but two weeks before he died he said, "I didn't know it would be so painful".  That poor man went through HELL (Sorry, I know all caps equate to yelling but it is called for here)!  SO, YES, YOU NEED TO STOP SMOKING.  

Most of us with tonsil cancer are diagnosed with squamous cell carcinoma and often at a stage IV because of lack of symptoms early on. 

Keep in mind that IF we have to be diagnosed with cancer, tonsil cancer is the cancer of choice because it is highly cureable unlike some that are only treatable. 

I am a tonsil cancer survivor (six years out and counting) and I am a little confused as to something you wrote.   You wrote that your doctor is hopeful that you can get rid of it because it shows only local in the tonsil area.   Then you wrote that there are still a few cells left in there after surgery. 

From my experience, my cancer was confined to my left tonsil but while two oncologists at two different cancer treatment hospitals both recommended that the surgery by my ENT (who diagnosed me with Squamous Cell) be followed by both radiation and chemo, their treatment plans differed.  Chances were very good that we got it all with the surgery but to ensure that they did, they wanted to do radiation to that area along with chemo.  I highly recommend TOMO radiation because those of us on here that had TOMO have a lot more of our saliva function return (which greatly helps later) than those who had other types of radiation. 

As for survival rate - we on CC are living proof that it is cureable.  Last year at my annual check up Dr. Citrin stated that he "now considers me cured of head and neck cancer".  I have my annual check up scheduled for Oct 14 and this year I won't even need a scan - just a blood test.  There are many of us survivors on Cancer Compass and I have been on here for six years. There has only been one person that was later diagnosed with a different type of cancer out of all who regularly respond here. 

I totally understand why you are questioning it because I remember asking that exact same question of my ENT six years ago.  The thing to keep in mind as pop pop said, statistics are justified by charting results on numerous patients over a prolonged period.  To put it in the words of my oncologist, Dr. Citrin in 2012, ten years ago our type of cancer was a death sentence but thanks to the new chemo drugs (cisplatin was my chemo), it is now cureable.  That is why there will be a difference between what some statistics will tell you and what is the actual truth.  For me, ten years ago without cisplatin versus six years ago (and now) with cisplatin means I am alive and cancer free. 

Your chances of survival are extremely good!!!  Just find an excellent oncologist to continue your treatment and six years from now you will join me on Cancer Compass sharing with others who have been diagnosed with tonsil cancer.

Diana     

     

      

RE: tonsil cancer afraid..

by PopPop on Tue Oct 08, 2013 02:08 PM

Quote | Reply

Kevin,

You probably have more questions then answers at the moment. You stated above that your next step was to see a Specialist to figure out what to do next. That should your number one priority at the moment.

You mention 2 bumps under your jaw bone, that is how I found my cancer, a hard BB sized bump under my right jaw bone. Went to my family Doctor who in turn sent me directly to the local Ear, Nose and Throat Doctor. Long story made short, after taking a couple of biopsies of the bump, a week later he called to tell me I had cancer and he made arrangments for me to see a Surgical Specialist the following week.

I spoke with the Specialist and I wanted the cancer out of me. I had part of my tongue removed and a Radical Neck disection. This is what I needed to have done. I was given other options, but as I mentioned, I wanted the cancer out, period.

As Bruce and Susan have mentioned, you will need to get pro-active now. First, stop smoking, make a list of all your questions to put forth to the Doctors. Second, take someone along with you so you have another set of ears listening and taking notes as you absorb all the information that is going to come your way.

When all the tests are done, then several options may be presented to you. We can only tell you what we have been thru. Each patient is different, but many of us have had similar treatments. Some had Chemo, and others didn't. Some have surgery, others don't so you can see there is a combination of ways to deal with this.

My Best to You and Everyone Here

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