In March 06 I found a lump on the right side of neck. Had it biopsied. The report came back negative. I was told it was something from birth that could of got infected. Don't worry, can get it removed 5 or 10 yrs. down the road. I am 48yrs. old and thought I'm in good health now, why not do this now instead of when I'm 60?? Gave 2 wks. notice at work. Was supposed to be same day surgery. They went in, and it didn't look right. I was still in the operating room, tested it, it showed squarmous cell carcinoma. The dr. got permission to take out lymph nodes then. I found all this out when I awoke from surgery. The other nodes where all negative. Went to radiologist( who happened to specialize in head & neck, and brachytherapy). He examined me and found that the left side didn't look right. Sent me back for another biopsy and that came back abnormal cells. If he wouldn't of caught that, they would of only radiated one side of my throat. Nothing showed up on the pet scan after the surgery, so they are assuming by feel, the tumor went across the base of my tongue, since cells where found on both sides. Like I said, I've had radiation, chemo (Carbo&Taxil) and brachytherapy. Hope I didn't bore anyone with my story. If you read all this thank you. What do you think? Does this happen often, that they don't find it at first? Is it normal to not show up on the pet scan? I'm scheduled for one in Nov., if nothing shows, how will I really know it's gone??? Thanks again for being there.

I was initially misdiagnosed, by an ENT no less! Last October, I went to my primary care physician with a lump under my left jaw-I didn't even see the doctor, I saw the physician's assistant who was alarmed and considered it possibly serious. The PA gave me a referral to an ENT and a surgeon for a biopsy. I got in to see the ENT first, in November. The ENT gave me a another round of antibiotics (which the PA had already done and had me return in December. Lump still there, ENT released me from his care. By January it was still there, so I made an appointment and went back in February. This time the ENT took a biopsy and referred me for an MRI. Not trusting him by now, I made an appt with another ENT, who called for the results of the biopsy (malignant cells detected), and made an appointment for the the next day at the UCLA Head and Neck cancer center. The surgeon there scheduled me for a neck dissection, which I had in March.

A fine needle biopsy, however, can be a hit and miss proposition. Unless the needle actually hits the cancer cells and extracts them, you won't know they're there. Think of it like sticking a straw into a bag containing a peanut butter and jelly sandwich. If the straw hits a spot where there is no jelly, all that will come out is bread and peanut butter.

PETscans require a certain minimum size to light up. I don't know what that threshhold is, but my current ENT said that she would see a tumor in my nasopharynx (with the lighted scope through the nose) first, before it would show up on a PET.

Linroth

I found a lump in my left neck while shaving one day and did the typical guy thing and didn't tell my wife. No pain and I thought they would just go away. I was never sick a day in my life. Avid bikest-100 miles per week at 22mph avg & high impact aerobics instructor. Well afetr 2 weeks and no change I told my wife and all h*#l broke loose. I went to 3 docs before my first cancer doc, a surgical ENT. He did a needle biopsy which came back as poorly dif SCC. He did a PET which both nodes (there was actually 2 not 1 as I felt) lit up but not much. I was told that there is a scale of 1 to 25 with 25 being the highest metabolic activity and the more activity the greater the chance of cancer. They don't consider anything below 4 to be cancer. My nodes came back as 3.9. No other site lit up. He wanted to do a Radical. I went to #2 cancer doc, a Medical Oncologist. He wanted to take to 2 nodes out only. I went to Moffitt Cancer Inst and they said no surgery necessary. All 3 had said chemo and rad was necessary and I went with Moffitt. They also gave me the highest survival rate. We all hope we made the best decision base upon our limited knowledge and trust in theirs.

linroth,
Your story is very similar to mine...if you wish to read mine it's on page 2 titled my story. Anyway I'm glad you made your way to this board, it has been a great source of knowledge and strength for me

Thank you, thank you, all for sharing your stories with me!!! It makes me feel, so not alone to know this happens to others as well. I've come to discover through this whole journey, that it's just a guessing game, trial and error with the doctors, and the treatment. Hopefully they learn from us, and can help others even more in the future. Have a great day, you sure started mine out great!!

It's me again! To David cpa, or anyone else who knows. Your tumor of the base of tongue. Did you have it removed? Are all base of tongue tumors located inside of the tongue? Mine is, it's not on the outside where anyone can actually see it. Maybe these are questions I should of asked my drs., but at the time there were too many questions, and so much stuff going through my head. They didn't want to remove mine, because they weren't sure of the boundaries, and the risk of losing a huge part of the tongue. Sound familiar?

This is not the club I wanted to join, but here I am, May 18 2005 had surgery Rochester Mayo, After a referal, Had large lump on right side of neck, didn,t do any thing till may, It was squramous cell that had spread there, but thats not whare it started, so back in they go for a look see found it on the base of my tongue as well, I was in Rochester 2 days later having surgery, they told me before surgery the worst case, they would have to take my tongue out, have a trak put in till it healed, that was the longest night I every spent thinking about it, I was of the mind to just lets get it done, well the tumor on my tongue was small, it was at the base of my tongue, The first thing I did when I woke up was to feel my tongue, I feel I am very lucky, to have caught it, how long was it there? they said maybe 3 years or more or less it just a guess.
They remove my lymph nodes and jugular vein on my right side, during this hit muscle that makes my right arm work. I can still pick my nose so not all is lost. 3 rounds of chemo, 33 radiation treatments, Im still here having good check ups.
Another person Had the same thing, but had to remove her tongue, we had the same DR. 3 years out it came back. This is what they told her, if 2 cells get by the radiation they will double each month, it takes one billion cells to show up. Hers returned on her lung they have removed them it looks good for her. They are enough neg things going on when we have cancer, there are alot of us that have been misdiagnosed, I went thru 2 months of having a pitty party for myself, depression, went to my doctor informed him of it he put me a meds an d I feel good as new, just can,t move like it. I ride bike when I can, have 2 children 12 & 15 I need to get thru school. It is a very scary thing, but you are not alone, and it can be beat. This board is a great thing, I had to search around but did find 2 others that had the same thing we all have had the same doctor, we do talk often it does help.
Good Luck
Chris

Linroth, When they told me that I had SCC in my 2 nodes they said it had to start somewhere else. I then got to see the Chief Head & Neck surgeon at Moffitt Cancer Institute. He scoped me and said "you see that area at the base of your tongue? (he had pictures of the scope on his computer), he continued "I think that may be your primary." He told me that he wanted to put me under and biopsy several areas starting with my base of tongue, then take the tonsils out and keep trying until he found it. I agreed and the next day I came back thinking I was going to all sorts of holes in my mouth but when they woke me up, my wife was there saying he found at the base of tongue so he stopped. The doc told us that it was so small he probably got all the cancer in the biopsy. They still radiated that area to be safe.

Linroth,

My base of tongue tumor was not operated on. My RO and ENT said the tumor was so small that radiation would take care of it. So my treatments consisted of Radiation to the mouth, throat and neck with concurrent chemo.

Thank you all for sharing. I so appreciate this site!! Until reading your stories, I had no one to talk to about base of tongue primary. I talked to people in chemo and radiation that I met, but I was the only one with this. Sure wish I would of found this site while I was going through the treatment, but am so glad I'm here now!!!! Have a great day.