Hello,

9 Weeks ago I found a large lump on my neck. It showed up overnight. Went to the Doctor and was given Zpak. Did nothing. 2 week later went to different doctor, She gave me another antibotic. Did nothing. Finial my thrid Doctor sent me to the ENT.

ENT did CT scan with contrass Showed nothing. Did a FNA biopsy inconclusive. Sceduled surgery for 8/25. Got my results today. Stage 3 SCC with unknown primary.

Horrible news. Age 43 2 kids 13 and 15 and a wonderful wife.

PET scheduled 9/5 Another surgery 9/12.

What are they going to operate on if nothing has shown? I want conclusive evidence before they cut or a damn good reason. I was a guinea pig 3 times and didn't like it. I didn't know until it was over tho.. Good luck Hockeydad and welcome to our home with a lot of wise people with great info.

Well Hockeye - I'm sure glad you found this place. There is so much of the latest and accurate information available here, plus support from knowledgeable people who have been where you are. As EZJim says, before any surgery is planned for me, I sure would want to know all the reasons why they want to to do it. It's good that you kept pushing to get answers. So many doctors may not be experienced with Oral Cancer so it's really important you find someone with extensive experiences treating cancer patients, and getting second or third or more opinions until you find someone that can give you some straight answers. Your health is important and with your wonderful wife and kids, you have great reasons to keep fighting this thing. I'm sure others will be along with more direct experience relating to yours. So, hang in there and keep checking back so we know what's happening with you.

Dad,

Actually the ENT has saved your life. You do need to run to a CCC and get them to find your Primary which is most likely your tonsils or BOT (base of tongue). They also need to test your cancer slides for the presence of HPV. Read my Signature Line. I am 6 years out and doing just fine except I'm 6 years older!

Hi, HockeyDad
Three cheers for your third doctor! My husband's primary tumor did not show up on the CT scan either, but did on the PET - so that should give you better information. As others have said, make sure they do the evaluation for HPV.

It is very important that you are evaluated and treated by a team that is very familiar with oral cancer. A tumor board (consisting of ENTs, ROs (radiologists), MOs (medical oncologists) and possibly SOs (surgical oncologists) should jointly decide on your course of treatment - not a single doctor. An official Comprehensive Cancer Center probably offers the best environment, but my husband was successfully treated at a public hospital by a team of excellent physicians.

Best wishes and keep us updated.

Maria

David,

What is CCC. Doc said it is likely Tonsils but he could not see anything that looks suspect nor anything on the CT scan.

The surgery is scheduled just to get it in the schedule. I think he going to after what he finds in the PET scan.

I had scc with unknown primary and ent did surgery just to remove some samples from my throat for biopsy. Turned out it was on my tonsil. Fortunately, that little hunting expedition was the only surgery I had. Sounds like that may be what your 2nd surgery will be.
A CCC is a comprehensive cancer center where cancer is all they do. There is a list of CCC's on here somewhere, I think originally posted by davidCPA.

Thanks for all you support. I have been view this forum for the past 2 months. I pretty much knew every word the doctor was going to say. But it was still hard to here.

I will go to the Seidman Cancer Center at University hosiptols in Cleveland. Does anyone have any feed back from them?

Hockeydad,
Many here will tell you to get a second opinion no matter what you think of your current doctor or facility. It is very important for a number of reasons.

The best place to get a second opinion is from a Comprehensive Cancer Center. These are the best of the best in the nation. They have a team approach and have to maintain a very high standard to get this designation.

One of the reasons you will want this as time goes by is Peace of Mind. The last thing you want to find out after your treatment was that there was a much better solution for you that you did not identify. A CCC will be aware of these options.

I highly recommend you get to one and get that second opinion before you make any further decisions. There is a list you can find on the home page here at OCF by typing in the search bar. The nearest one in Ohio is:

Case Comprehensive Cancer Center
Case Western Reserve University
Stanton L. Gerson, M.D.
Director
11100 Euclid Ave., Wearn 151
Cleveland, Ohio 44106-5065
Tel: (216) 844-8562
Fax: (216) 844-4975

Good luck and make sure you get that second opinion.

Hello HD - I too found my cancer through a lump, which they thought was a cyst but turned out to be a malignant lymph node. In fact my first FNA came back negative and it was only when the ENT went in to remove "the cyst" that he knew it was cancer. So I'm going to assume you're getting some kind of modified neck dissection in which they'll remove the cancerous lymph node (assuming that's what it is) and any others they deem suspicious.

Oh and even after what they call a triple endoscopy - this was after my first surgery but before the neck dissection - they never did find the primary tumor. This is not unusual however, so if they never do find yours - which, as my Davidian colleague says is most likely BOT/tonsils/remnant of tonsils (if yours had been removed like mine when I was a kid - I wouldn't lose any sleep over it.

Keep us closely apprised. There are tons of people here who can help you through everything you're facing. Sounds as if your doc is on the ball!

My thoughts are with you.