I hope it's ok that I'm answering so much. I don't want to seem like I'm trying to dominate here. It's just a relief to talk to people who get it.
I won't be surprised if it is cancer. I do know that cells do look irregular sometimes. I'm not sure how he can tell about the nodes except by feel. We're also not talking much about his recommendations about tx since it seems pre mature. Also just from reading posts here,I see there is a huge variation of treatment types.
We do have the MRI and PET schedule as I mentioned(both next week). Should we meet with a CCC center in the meantime or wait for the results. I'm not really sure I want this guy interpreting them.

Susan,

This is your thread so you can't dominate it.

By the way, at this point it is not a race to treatment, it is a search for the best possible medical team and facility you can find.

It was a month from my diagnosis until my first treatment (lots of stuff in between).

Susan --

Welcome to OCF. Since you are in NYC, you may want to contact the head and neck cancer team at Memorial Sloan-Kettering. It's one of the top two cancer centers in the US (the #1 position in the US News rankings switches between it and MD Anderson in Houston), and several people here have either been treated there or gotten second/third opinions from there.

I don't know whether you can book an appointment until you have gotten a definitive diagnosis, but you can at least find out now how the system works and what the doctors there will need.

I wish you and your husband all the best. And keep coming back -- everyone here has been there, done that and can answer any question you have (or know where to go to get it answered!).

Catherine -- thanks for the kind words!

Carol went to an ENT (12/09) that has been in practice for many years. He was very calm but also very concerned when he was examining her. Almost sounded apologetic. He very briefly went over the options; radiation, chemo and/or surgery. Then he asked permission to do a biopsy. As with Kelly's post, it was very obvious to us that the ENT had seen it before. The next day Carol had an appointment with a well respected, well known ENT Dr at the hospital. (Another older doc.) He ordered a CT Scan and scheduled Carol for a Combined Tumor Board. The biopsy results in her case took about a week. The results went directly to the 2nd ENT who is now part of Carol's team. According to her pathology report it stated left tonsil, SCC, poorly differentiated. Unfortunately Carol's OC is advanced. The report does not need to be interpreted. It's there in black and white. If there is cancer then the necessary tests will be done to determine the stage, if it has spread, recommended treatments, etc. Like other posts it is NOT cancer until the biopsy says it is.

I would dump that ENT like a hot potato...

There are many knowledgeable folks on this site. Current patients, survivors and caregivers. They will tell you like it is, provide support, share their experiences. There is a lot of info to be had here. As the saying goes the only dumb question is the one not asked.

Linda

Thanks, I was wondering how folks felt about Sloan. I'm a native New Yorker so I grew up with that's the place to go. I just read the stuff on them and I like what they have to say.
Kelly, you actually answered another question I had(and eloquently too). I keep feeling this since of urgency. I hate to keep bringing up this Dr but he also said you only have one shot so you want to make it your best shot. Also, someone here mentioned that tongue cancer is particularly aggressive.

Good point on the tests not needing to be interpreted. I spoke to my husband about the recommendations here and he called an MD friend to get some names. Turns out two of them are from Sloan. One is at Beth Israel. Not quite sure how to decide...
In people's experience when you have gone for a second(someone said a third too) opinion will the MD accept the tests ordered by the previous doctor? I guess I'm wondering if they will want their own MRI and PET.
Also, can someone point me towards some threads(or websites?) that discuss these tests.
I am absolutely planning on sticking around. I feel better every time I come on and hopefully one day I can return the favor.
Oh, I did ask Dave if he did anything with the nodes. He just felt them and said he was concerned based on both of them feeling hard. Thought that represented the involvement on both sides.

Hi Susan from another native New Yorker, transplanted to PA.

Again, just so you are sure:

1. This is your thread...no need to apologize for anything. We know what you are both going through. If it turns out that he does have cancer, try to get Dave on the forum. It ususally works out that either the patient or the caregiver are active, however once in a while it's both.

2. This ENT needs some help in his bedside manner. It is absolutely wrong to tell someone that they have OC without the reults of a biopsy. Also, nodes can be enlarged without being cancerous. Right decision, not to use him.

3. You have access to one of the best CCC's in the world. Leslie (as always) has given you some great information on how to get the ball rolling so you can get Dave into Sloan. BTW, there is an OCF member that lives in CA and he came to Sloan to be treated.

4. Any scans or biopsies taken in one location would more than likely be acceptable to another doctor. They will want to read them themselves, so they must be sent ahead or at least brought with you.

Good luck with your journey and I hope that the ENT is wrong.

Jerry, thank you. I would love for this guy to be wrong. But he was just so sure about it that it's hard to believe. From reading posts I've been getting a better idea of what questions to ask Dave(I asked to be let into the room when I heard the word biopsy). Dave said as soon as he looked at it he said "that's cancer." As much as I agree in theory about the biopsy I can't imagine he would be that dumb to be that assertive about it if there was any doubt.It is very large and nasty looking.
Leslie was very clear(and helpful) so we are moving forward with Sloan. We are also calling a person who was recommended from Beth Israel(any thoughts on that place?).
Is it odd that we are moving forward without the biopsy? Have most people waited for it?

susan,
from one caregiver to another...welcome!

the PEG is normal...sometimes livesaving. the PEG will probably be put in before treatment begins or shortly afterwards. be sure and read the post on this by using the search box at the top=right of the page. u will not get alot of info on this from the surgeon, but there is tons of helpful info on here.

u can use the search box to search for anything and it will take u to threads with that word in it. very useful tool!

u are in for the journey of ur life. but stick close to this site and u will get thru fine. we are all here for u day or nite 24/7!

ask as many questions as u need-u will have plenty-and use us to rant and rave and vent when necessary.

u will eventually get a biopsy from one of the drs. its inevitable.

the lymph node involvement means the cancer has spread..that will determine daves staging, along with other factors. but as others have posted...its very common. so dont be frightened by that. it was the lymph node involvement that caught my hubbys cancer so it was a blessing of sorts.

ok, so now im taking over ur thread...lol. hope i was of some help.

[quote]We are also calling a person who was recommended from Beth Israel(any thoughts on that place?).[/quote]
A good friend of mine had a friend with oral cancer who traveled from Israel to be seen by one of the doctors at Beth Israel. The friend was going to be treated in Israel but really wanted to get the Beth Israel doctor's opinion before treatment began. Let me know if you want the dr's name; I can PM it to you.

It never hurts to get second opinions; one poster here, davidcpa, got five -- and ended up going with the final one, from a top cancer center in Florida. He has said that if he had not persisted until he found a place where he felt he would get the best treatment, he would either be dead or have a considerably diminished quality of life.

[quote]Also, can someone point me towards some threads(or websites?) that discuss these tests.[/quote]
Probably the best place to start is here. The pages of the OCF site are filled with reliable information vetted by OCF's science advisory board.

There are two search engines available to you. One is for the message boards only, and it is located in the top right corner of each forum page. The other is for the main site; you can access it by clicking on the gold "Search" link at the bottom of each forum page or from the left rail of any page on the main OCF site.