Hi Susan and Dave
Welcome to OCF. I know right now you have a million questions and your heads are still trying to comprehend what the ENT told you. Im sure he was meaning well when he said it was cancer but without a biopsy he cant be sure. Its always wise to get the biopsy as soon as possible to rule cancer out. Dont worry, any test will follow you to other doctors. Im happy to see you are not staying with this ENT. A CCC is a much wiser decision.

Always take a pad and pen to any appointments and never go alone. Try to write down questions in advance. Even if Dave says its not necessary, be in the room if for nothing else to be another set of ears. It can be several weeks before treatments start so for now relax and take things day by day. If it is cancer, Dave may want to eat all his favorites before treatments alter his sense of taste.

Please dont hesitate to ask questions. Since this site is full of people from all over the world, it usually doesnt take long to get a couple responses to your questions.

Please add a signature, it helps us get to know you better. Doesnt have to be anything fancy. Look at other members lines and put whatever you want. To add one, its located under My Stuff tab, then profile, the box on the bottom.

Best of luck with everything. Hoping you really dont have to be here.

It's amazing. Every time I sign on here I get another useful fact or it stops my mind from being crazy.
I just woke up out of a sound sleep and my mind start getting crazy with this Dr. again. Intellectually,I know the issue is his(who needs to visibly do a deep breathing exercise before talking to a patient). We have 4 kids so as you might imagine we frequently see Drs for different things, my dad died of pancreatic cancer and my mom has a heart condition and so we see more Drs than I'd like.
But I have never come across someone so rattled. Even Dave who is a very calm guy said he started thinking this must be the worse case of oral cancer in history for this guy to get so upset. And I'm not exaggerating his reaction at all. He was visibly upset.
To sum up:
He took one look and told Dave it was cancer.
He biopsied it but didn't tell us how long it would be to get results. In response to that question he said"even if it comes back clean,I'll keep biopsing until it comes back positive I'm so sure."
He was able to tell us where the cancer started and spread to(under the tongue(although there's nothing there) around to the surface(where the visible thing is),
He said there was node involvement on both sides because both sides were swollen.
He said that Dave only gets one shot at getting better.
And he was flustered and upset!!!
As I said early,I know there is a good chance he is right through history and symptoms and I know he should have been more poker face.
BUT is it possible that what he saw was just so awful and obvious that was what freaked him out?
Like I said the thing in Dave's mouth looks like an open wound(although the rest of the tongue looks fine) so maybe that's really bad.
Ok this is my middle of the night , probably irrational thinking but I figured I'd put it out there to folks that have various experiences with Drs reactions.

We are going to contact both the Beth Israel guy and the Sloan guy to see where to start!!!

The OCF web site is many layered, and not all of those layers are accessed in the main navigation bars but from links in pages. Use the search engine and the site map to help find your answers. In preparation for a biopsy answer that perhaps says you are one of our family, please read this page first to understand where your results put you in the scheme of things. http://oralcancerfoundation.org/facts/stages_cancer.htm

Please note my personal message there, to keep your perspective appropriate and proportionate.

Sloan is a world class institution. Please begin to think of treatment teams rather than treatment doctors. This also applies to what is called the "tumor board" which will be docs, from many different disciplines, that TOGETHER will help you decide your best pathway to a successful outcome.

If your nervous doc hasn't told you he will have results from your biopsy to you in the next 4 days, start playing the aggressive, put us in the front of your priorities list, full of attitude person, to get it out of the lab, and you mind calm or you moving forward on a path. Limbo sucks big time. It is emotional purgatory. Do not let any excuses get in your way of a black and white answer. Lesson ONE in all this, is that this is a complex situation with lots of information quickly thrown at you and difficult decision needing to be made in an expedient amount of time. In order to have the optimum experience you will have to be YOUR OWN ADVOCATE with the treating professional much of the time. This at first seems counter intuitive, but remember it is not their life on the line.... and respectfully said to the many caring professionals whose training allow us to continue our existence, too often they think like that. You are a New Yorker.... respectfully, live up to the stereotype and reputation, to get what you need when you need it.

The many knowledgeable people here will keep you on track if you ask lots of questions, but you will have to be an active participant in everything, and you will keep your treatment team on track.

You have all of our wishes for a rapid and successful path through all this. No one gets through it alone, and everyone here is going to be there for you both.

A young doctor might not have the clinical experience with serious disease states to have the professional decorum that we see in most docs. As a stage four patient with bilateral node involvement, my doctors at MD Anderson knew that it had been around for too long. (i.e the opportunity for metastasis out of the local region was a possibility.) That said, mine had not left my neck, and everything was still local. But IF bilateral is his case, they will likely have an aggressive approach to any treatments, involving several types of treatment/approaches/modalities.

That he could, without scans, tell you how it spread from point A to point B and C, was not a big leap. There are known pathways of spread of squamous cell carcinoma from the tongue, to the nodes in the floor of the mouth to the various chains of nodes in the neck etc. This wasn't a Tarot card trick by him, but it is fairly predictable.

As to the comment about one shot to get it, this is largely a function of stage of progression at time of discovery/diagnosis. Obviously more advanced diseases (of all types) require a "throw the kitchen sink at it" kind of approach, vs. early stage finds, which more conservative measures might be an adequate approach, since options and time are on your side.

Don't be surprised by the rapid replies, even in the middle of the night... there are OCF posters in Australia who are just getting up now, and likely to chime in before you wake up in the morning.

He wasn't a young Dr that was part of what freaked me out. And is part of my feeling that he knew he was looking at something so severe that chances were Dave wouldn't make it and he was having to tell him that.
Brian, if I'm reading what you are saying right his style wasn't good but chances are through sight and symptoms he was able to identify that Dave is in later stages.
Is it more common that it has metastis if there is bi lateral involvement? That is probably why he said he didn't like that the nodes were swollen on both sides.
I just am trying to be careful here because from my understanding nodes can swell from colds or allergies(both of which Dave have right now).
I guess the Drs reaction has me fighting negative thoughts (without concrete reasons) because why else would he be so nervous?

I can certainly be the New Yorker if I need to. He told us it would take at least a week to set up the first test. I have the MRI scheduled for this Monday!!! I will also call Monday to see when the biopsy will come back.

susan,
taking a pad and pen to the dr visits is a great idea. i did this and not only wrote down questions in advance, but wrote down all the terminology that came out of the drs mouth and looked it up later on the net. they will throw some words at u that u cant possibly understand.

u and dave are in for a whirlwind of dr visits/proceedures in the coming weeks...it can easily get overwhelming, so have one designated place to store all the "stuff" u will get from the drs. buy a notebook...its alot easier to locate a notebook than loose sheets of paper.

and lol...i have no doubt that someone from nyc can be aggressive...my hubby is from queens.

Theresa, I had already thought about starting a folder for all this stuff. I like the idea of a notebook even better. You wouldn't know it but I'm normally a pretty calm person(have to be with 4 kids) so several times I have gone with family and friends to act as the write the questions down person. We are lucky enough to have a huge support network when we need to access it. Right now, my husband doesn't want to talk to folks about it because he wants more info and wants to digest it himself first. Not my style as you guys can see by my blabbing here but I feel he gets to call it on this one.
That makes me even more grateful to have this forum.

I have been soaking up recommendations like a sponge. So, I think we have narrowed down one or two doctors from Sloan to meet with.
We are (as was said so well before) dumping the other MD like a "hot potato." I can see that I'm still shaking off the effects of his reaction. It's really hard to be calm when the Dr hands you papers and his hands are shaking with visible nerves.
I'm working hard to not take his attitude as a death sentence but as a sign of his unprofessionalism. To be honest I still need more work in that area.
Reading people's stories here,I see there was a wide variety of dx but most people seemed to be given there info complete with a full set of facts.
Again, I'm not trying to sound like I know more than him or that I'm doubting he is correct but it seems it would have been more prudent for him to not get upset and recommend a tentative course of tx once we had some tests and more than visual inspection and history done.
We are absolutely also going to follow the recommendation of having everything done in one place.
I like the idea of team meetings.

The one good(?) thing that has come out of this is I am not worrying about stupid stuff right now. Stuff that seemed so important before has a different perspective. The bad thing is I find my concentration and patience somewhat shot.
Do people find themselves getting into a kind of "zone" with it eventually where you don't feel so consumed with thinking about it.

OOPS. One more question. Dave is a very thin guy(naturally) to begin with. A few months ago he had changed his diet to make sure his cholestoral was ok. Since June he lost 8-9 pounds(the weight loss was another concern of the Dr but honestly he had really changed his eating and exercise habits).
Right now, he has a huge appetite(and minimal discomfort with his mouth even after the biopsy) and has been enjoying eating whatever he wants. Should he be trying to gain some weight before starting tx or doesn't it matter?
Should the dr have biopsied his nodes yesterday since he said there is "activity" on both sides?

Although my name is Kelly, I'm a guy (most here still think I'm a girl) I was a thin guy going into treatment but was warned to put on the pounds before and during treatment. That was great advice; I put on about 10 pounds (hard for us thin guys) in about three weeks. I lost that during treatment and came out the back end about the same as I did going in. This was considered highly unusual as most lose a great deal more than I did. Then again my lovely caring wife was an absolute battleaxe about my nutrition. She had her own meetings with my nutritionalist.

It�s all going to come back off so have at it with the most sinful foods he ever wanted to eat.

Kelly

Thanks Kelly, I'm pretty good at battleax mode(poor guy living with a battleax New Yorker). We justagain discussed the importance of him putting on the weight. I said 15 pounds in two weeks(I seem to put 15 pounds on just standing in front of the bakery counter. sigh) but I'll take 10 happily.
I read somewhere here that folks also use ensure so in addition to him getting used to eating three meals(no more meal skipping) of fattening stuff I suggested he have the ensure around for times he's busy and for in between. Hope I'm on the right track and that doesn't fill him unnecessarily.
We're going to go out for the day, enjoy the kids(and the dog who is clearly feeling the tension in the house) and just try to go back to being us for a bit!!!

Just a quick answer to one question since I am getting on a plane. Nodes from infections hurt, are tender. Painless nodes are the dangerous ones. You have a tooth abscess that drains into the cervical nodes or an ear infection that is being cleaned up by them, those noes are really tender to the touch. When I found my own cancer...(everyone that had been looking at me for a year missed it) I could flick the swollen node with my finger and felt nothing. No pain. That is the give away that these are something not so good. Seems like the members are taking good care of you, will check again tonight when I get on the ground, and in the morning before my lecture to see if there are any unanswered questions.