Simple Gifts I read they took out both of your tonsils. Was that due to scc in both tonsils? Angel

[quote=reverie]Simple Gifts, did your tonsil look the way I described mine, and what was the process to your diagnosis? Did you have a tonsillectomy or was he able to determine SCC from a less invasive procedure? Can you tell me what I should do to get the fastest and most accurate diagnosis possible given what I suspect it is? Thanks. [/quote]

The description from the ENT's report is "some scarring and a little indented area of the upper part of the anterior tonsillar pillar on the right side, but there is also a piece of waht appears to be tonsillar tissue hanging down. Impression: Growth of right tonsil vs. scarring. Recommendation: Microlaryngoscopy with biopsy."

After the surgery, he said he wasn't sure what he removed as it did not look like a typical cancer. I thought I was getting a simple biopsy (take a snip and and send it to the lab), but obviously I didn't ask detailed questions about the procedure. He did explain that tonsil cancer does not mean the cancer is in the tonsil, but rather the tonsil area.

[quote=angels1313]Simple Gifts I read they took out both of your tonsils. Was that due to scc in both tonsils? Angel [/quote]

Angel, the second tonsil was removed because after the original surgery the CT scan "lit" up in that area. It was easier to remove the whole tonsil and have it tested then go in looking for something. My ENT implied that it was typical for cancer to be in the tonsil. The tonsil tested fine - he assumed I just had some bacteria or something.

Just as a side note, since someone asked me last week, tonsillectomies NEVER remove 100% of the tonsil - there is always some tissue left. So as a method for prevention of ever getting tonsil cancer this doesn't work... they can atually sometimes even grow back to a certain extent. Also I wouoldn't trust a surgeon's eye to determione if the tonsile tissue looked like a typical SCC or not. As you all know, there is no trained eye that can tell you if something is cancer or it is not. That removed tissue should go to a pathologist for histological microscopic exam, which is the gold standard that will give you a black and white answer as to what it is.

Sent from the way out in the middle of nowhere back country of Idaho after a lecture tour in BC Canada and meetings with the BC Cancer Agency by satellite phone hook up....ain't technology amazing.

Brian, You are so right about both. I have heard of people who had their tonsils removed and they grew back, and until a biopsy is completed you can't really say what it is. In my case I had a couple of rounds of antibiotics and my tonsil looked awful still and didn't get well so I knew something was very wrong. Sounds like you are having a great trip. Thank you and others for this site. Angel

Reverie .... Today the ENT's office called and my Dr. met with the cancer board Friday and discussed my case. Now they are going to do a fine needle biopsy of my right thyroid as it also lit up in the pet scan and was found in the cat scan. Were you able to make up your mind about where to start in getting help with a diagnosis? Angel

My H&N surgeon told me that he thought that my tumor was around 2 years old at the time of diagnosis. It was essentially asymptomatic - no pain, just a mild sensation of something caught in my throat and a little hoarseness. It was a tan rubbery blob that had gotten do large that it pushed my uvula to the side.

Radiation decimated it and the tonsil it was attached to - I had no surgery. Everyone's story is a little different however so your experience may not mirror mine. There are other tonsil diseases that are not cancerous, such as PTA (peritonsillar abcess). If they give you antibiotics and there is no response by two weeks then you should get a referal to an ENT or head & neck surgeon for a more comprehensive examination and biopsy if need be (be sure that the doctor has head & neck cancer experience). Visual examination, palpation exam and the biopsy are the gold standard.

Just a general comment about HPV. I had tonsil cancer ( left side ) with affected lymph node. Had radical neck dissection and finished radiation in January 08. We started seeing articles about the number of rising cases of oral cancer that could be tied to HPV 16 and 18. Discussed with surgeon and ROC but neither seemed to be that up to date or care I guess as the virus can lay dormant for so long and at this point, what does it matter? I just had some blood work done by my family doctor and asked him specifically to see if I was HPV negative or postitive but he said lab work could not tell - tissue samples was the only way.

William. I also asked my ENT to test me for HPV and he didn't while I was in the hospital, so when I read your message I noticed that it says you would need a tissue sample, like a biopsy? to check for HPV. What I would like to find out is who would I contact, my PCP or someone else as I would like to have the test done and can't figure out who would be responsible for getting it done. Thanks, Angel

Gary, Yes I was referred to an ENT and he removed the Left tonsil on June 10, 2008. It was diagnosed as scc. I have several places that lit up in my lymph nodes on the Pet scan. They will be doing a fine needle biopsy on my right thyroid gland next Monday. My ENT has conferred with the cancer board at Harbin Clinic in Rome, Ga. I could not get to a CCC. But I hope to get there once this biopsy is done if needed. My ENT said I would be having radiation after my tonsil is healed. They are trying to determine if I need a neck dissection. Angel