Looking For Answers Regarding Possible Tonsil Cancer

Hi,

I'm new to this forum and my journey brought me here because I recently went in to have my hearing loss checked w/ an ENT.  While checking my ears, my ENT also checked my nose and throat, where in my throat he found my right tonsil to be 3x as large as my left.  Apparently that raised red flags because he scheduled a neck MRI.  I just got the results back yesterday and thankfully no cancer showed up on the MRI.  However, he did not rule out that nothing was wrong mainly because it is very abnormal to have assymetrical tonsils.  The only way they would be able to tell if there is something cancerous deeper is to do a biopsy.  If a biospy is done, then they would just remove my tonsils.  I think at this point what do I have to lose, it's just my tonsils, right? If it something serious, I would be catching anything early.  I just can't think of what else would be causing the enlarged tonsil.

Just curious if anyone has experienced the same type of thing or what the odds of finding a cancerous tonsil are??  Any feedback or insight would be greatly appreciated.

 -Bethany

Hi Bethany,

Most of the folks on this board have a similar story. I looked down my throat while brushing my teeth and noticed the right tonsil was bigger than the left. After being told it was nothing, only an infection, they removed the tonsils and found SCC with 4 lymph node involvement (Stage IV). I had no pain, no swelling in my neck, no discomfort or physical signs of any kind, just the asymetrical tonsils. That was almost 3 years ago. I have been through the standard treatments (chemo and radiation), had the PEG (feeding tube), lost the weight (30 lbs), as have most of the board members. I am now in the best shape of my life.

I hope the results of your testing turns out better than mine but if not, I hope your remedial therapy turns out as good as mine.

Good Luck!

Joe 

On 8/14/2008 Defjoeb wrote:

Hi Bethany,

Most of the folks on this board have a similar story. I looked down my throat while brushing my teeth and noticed the right tonsil was bigger than the left. After being told it was nothing, only an infection, they removed the tonsils and found SCC with 4 lymph node involvement (Stage IV). I had no pain, no swelling in my neck, no discomfort or physical signs of any kind, just the asymetrical tonsils. That was almost 3 years ago. I have been through the standard treatments (chemo and radiation), had the PEG (feeding tube), lost the weight (30 lbs), as have most of the board members. I am now in the best shape of my life.

I hope the results of your testing turns out better than mine but if not, I hope your remedial therapy turns out as good as mine.

Good Luck!

Joe 

Thanks for the informative response, Joe.  When things like this happen you start to question whether or not you're just being paranoid and think there's no way it could be anything bad.  I've learned from this experience that I'm not going to take any chances w/ my health.  Thanks again for your insight, it has only solidified my decision to remove my tonsils.  I'm happy to hear you are healthy and more importantly, living life!!

-Bethany

Hi Bethany,

That's a tough one to answer. I was diagnosed with Squamous Cell Carcinoma after a biopsy was done on an enlarged lymph node on the left side of my neck. The source of the primary cancer was unknown, but after a PET scan the base of tongue was suspected. I visited an EN&T surgeon who wanted to remove my tonsils for a biopsy. I refused, and it turns out my decision was fortunate. Nothing was wrong with my tonsils at all. Of course, you situation is different; my tonsils were not enlarged.

 I'm sure someone who has had tonsil cancer can give you better answers. My best suggestion, however, many would probably agree with. Get a second opinion. Then a third opinion. Then a fourth opinion. As many as you can afford, and as many as it takes to make you feel comfortable. It may turn out that your tonsils are not cancerous, and I hope that's the case. If it turns out otherwise, though it is very difficult, try not to be guided by fear.

I wish and hope the best for you.

Cheers!
Charlie

On 8/14/2008 BethM wrote:

Hi,

I'm new to this forum and my journey brought me here because I recently went in to have my hearing loss checked w/ an ENT.  While checking my ears, my ENT also checked my nose and throat, where in my throat he found my right tonsil to be 3x as large as my left.  Apparently that raised red flags because he scheduled a neck MRI.  I just got the results back yesterday and thankfully no cancer showed up on the MRI.  However, he did not rule out that nothing was wrong mainly because it is very abnormal to have assymetrical tonsils.  The only way they would be able to tell if there is something cancerous deeper is to do a biopsy.  If a biospy is done, then they would just remove my tonsils.  I think at this point what do I have to lose, it's just my tonsils, right? If it something serious, I would be catching anything early.  I just can't think of what else would be causing the enlarged tonsil.

Just curious if anyone has experienced the same type of thing or what the odds of finding a cancerous tonsil are??  Any feedback or insight would be greatly appreciated.

 -Bethany

Hi Bethany

Generally I am the first person to say get a second opinion or even a third opinion but this is the first time I have to say - go ahead and get your tonsils taken out.  They don't serve a function anyway. 

Last year I was experiencing fatigue and some very mild chest pains - not enough to double me over but enough to aggravate me at times (fine at other times).  First I had my yearly check up with my gynecologist and then I had a colonoscopy (which everyone needs starting at a certain age),  My gynecologist said I was fine and the only thing said at my colonoscopy was that my blood pressure went up when they gave me anestetic to put me under.  I found out later from my daughter who is a nurse it should have done the opposite.  Otherwise, everything was perfect.  Approximately two weeks later my blood pressure went up again (I have had hypertension episodes for a few years so it was nothing unusual).  My husband was concerned as he was out of town on a busines trip so he recommended I go to urgent care.  While at urgent care the young doctor just happened to ask "Has anyone ever told you that you have an extremely large left tonsil?"  Actually I had been told my entire life that I was born without any.  I later learned that they were there - just very tiny or both had been.  I came home and looked in the mirror at the back of my throat and I could definitely see my enlarged left tonsil.  I went to my (former) primary care doctor who looked at it and just shrugged his shoulders.  As my father had a long history of heart disease I was concerned about the chest pains - no matter how mild - so I asked for a referral to a cardiac doctor.  I still knew in my heart that something was wrong.  Bless her - she took one look in my mouth and said "We need to get you to an ENT and she may want to biopsy that".  I went to an ENT days later (Wed evening) and her first reaction after looking in my mouth was "Holy mackeral!"  She told me then and there that it was either Squamous Cell Carcinoma or Lymphoma - well possibly an infection but highly unlikely (I think the last was more to calm me as I'm sure at that point I looked the way I felt - petrified).  I was in surgery the following Monday morning and diagosed with SCC before leaving the OR.  A stress test the cardiac doctor ordered was fine. 

I pray that it is not cancer but it is better to be safe than sorry.  Since your one tonsil is so much larger than the other would certainly point toward a cancerous growth.  One good part of having tonsil cancer is it is highly cureable if caught early. 

Please let us know how it turns out.  We have quite a tremendous support group of people here who have been through treatment for tonsil cancer and IF it turns out that is your diagnosis, many here will support you every step of the way.  I wish you the very best.

Diana

Hi Beth:

My "similar story" starts with having difficulty swallowing because of swelling in the left side of my throat. my GP looked at it and said he wasnt sure what it was, but he was going to send me to someone who WOULD know what it was. That turned out to be a top notch ENT who took one look and told me I had cancer, but lets biopsy to make sure. ( I did, tonsil cancer, left side, stage 4). Like most on here, I had 7 weeks of radiation and chemo, which knocked me flat, but here I am, 10 months post treatment, cancer free, 40 pounds lighter and in pretty darn good health.

 Go on and get that biopsy, get a secong opinion if it makes you feel better. If it turns out to be cancer, it is beatable. If you wind up going through the chemo and radiation, we'll be right here with you every step of the way.

Good luck and best wishes

Mike

On 8/14/2008 BethM wrote:

Hi,

I'm new to this forum and my journey brought me here because I recently went in to have my hearing loss checked w/ an ENT.  While checking my ears, my ENT also checked my nose and throat, where in my throat he found my right tonsil to be 3x as large as my left.  Apparently that raised red flags because he scheduled a neck MRI.  I just got the results back yesterday and thankfully no cancer showed up on the MRI.  However, he did not rule out that nothing was wrong mainly because it is very abnormal to have assymetrical tonsils.  The only way they would be able to tell if there is something cancerous deeper is to do a biopsy.  If a biospy is done, then they would just remove my tonsils.  I think at this point what do I have to lose, it's just my tonsils, right? If it something serious, I would be catching anything early.  I just can't think of what else would be causing the enlarged tonsil.

Just curious if anyone has experienced the same type of thing or what the odds of finding a cancerous tonsil are??  Any feedback or insight would be greatly appreciated.

 -Bethany