Forgot to say, that the 23rd, is too far away for your first consult there. Call me. I want you to call someone I know there to try to push this date up.

Oh -oh Brian, I have a feeling I might have screwed up in my explanation here. I'm trying to process info as it filters in through Dave and our primary(the ENT has not even spoken to us and now we won't go with him anyway). I'm probably mixing up terminology here.
He has one tumor. I thought the MD said it was base of tongue. It's towards the back of the tongue. As soon as it became painful he went to the Dr. He was a smoker(NO MORE!!!).
As far, as I know(and I sure don't know much) they are not saying it is anywhere else in his mouth.
But I guess that's what I'm wondering. what test do they do to determine that? Do they biopsy the jaw or cheek or does it show on the PET.

I do know that if it is in the nodes it spread(although I just read on the main part of the site that you need to biopsy the nodes for malignancy too but I guess they just assume it if the primary tumor is CA,right?).

My concern with t him saying it could easily be elsewhere if it was in the nodes was it contradicted him saying it was good didn't spread to the other side(according to the MRI. He seems skeptical about that).

I didn't ask about size or number either. All this info has been on the phone. After being on here, I honestly feel the best thing to do is wait till we meet with the Sloan guy and get a decent explanation.

just hung up the phone with Dave. I'm married to the world's nicest guy. Thought to myself,I don't care what Dr gloom and doom say you and I are getting through this and having a continued nice life together.
Theresa, I can't tell you how much I admire your attitude.

lol...hey im a freakout QUEEN! i freak out, come on here, get some reassurance or a swift kick (whichever i need) and then move forward.
this forum is a life line for me and everyone else. when they say they know how i feel, they REALLY DO KNOW. it makes all the difference.
it is also such a joy to be able to help others.

OK base of tongue is USUALLY an HPV positive tumor. Late staging in these oral cancers has about the same long term survival at 6.5 years (That's as long as we've been tracking) as earlier stage tobacco cancers. This is both good and bad. Base of tongue responds well, but it's also a place that you don't want to mess with it surgically if possible, since the long term quality of life issues of messing with it are significant. You want to be particular diligent about the scan in the tonsil area. It is not uncommon for occult (not seeable) cancer to exist in the tonsils as well. Those you can surgically deal with no QOL issues. In actuality the lymph style tissue from the tonsils also runs across the base of the tongue, and there are actually in most people, small flame shaped flags of tissues on the edges of the base of the tongue (normal) that people mistake for some kind of growth that are really just lingual tonsils.

One thing that is becoming apparent to doctors now is the BOT cancers move very quickly to the cervical nodes of the neck because they are so close to the pathway of lymph tissue that leads down there. Hence very rapid move from intra-oral to cervical, which in tobacco, anterior of the tongue cancers, can take as much as a year in some people.

Unilateral nodes are better finds that bilateral. But as I said before bilateral is not the horrible thing that some say.... there are a bunch of us here that show good results in spite of it. Nevertheless, once in the nodes it is on the freeway that leads everywhere else. That's why I do not want you to wait for that 2 week away appointment, but call them and PUSH, CAJIOL, LIE, THREATEN, CRY, and any other tactic you can think of to get an earlier date. Even with an earlier date there is lots to do before treatments can begin. TIME> TIME> TIME.... unlike the stones song, is NOT on your side when it comes to any cancer (except prostate). Urgent does not mean come unglued and think the worst. Urgent does mean fight for what you need when you need it, and be your own advocate. No one cares about you as much as you do (OCF members excluded). Doctors included.

Tobacco is very hard to quit. Nicotine is as addictive as heroin. Fear is a great motivator. Having said that I saw patients go outside for a smoke while waiting for radiation treatments. Most were lying to their doctors and spouses. Take nothing for granted. Buy NRT's at the drug store if Dave is having any withdrawal issues.

Ilesrn everyday from our members and our founder Brain.. This is my # 1 home it seems.

I learn too . LOL

Susan,

My MD gave me a script for a mild anti anxiety med. He said two equal one Valium. He let me know that between the DX and start of treatment (all the waiting) and quitting smoking I was going to need something to calm my nerves. He was right.

I did not get a PET or an MRI but did get a CT (head neck and chest) along with a chest X-Ray. I was a T3 meaning 3 Cm but I did not have node involvement.

Your ENT is a real Peach "this is a nasty cancer." Yahhh like there�s a nice one! Yes, treatment is hard on OC patients because of the location, but it�s a curable cancer.

I�m still with my ENT for a number of reasons, but one of them is the last thing he left me with after he told me I had cancer. He looked me right in the eye and said, � We can cure this cancer�

I think you will have a better feeling about treatment after you get to Sloan. They live to kill cancer.

Kelly

Jim, I can certainly see why you say that. I have quit reading other places on the web and am sticking to here.
Brian, that post was so clear. Can you give the ENT some lessons???

Ok some of it is coming back to me as I read your post. He thought there was concern for spreading because the involvement while on one side(per MRI) was the clavicle. I guess because it's lower it shows more possibility of spread. Is cervical node stuff unusual?

I will call you tomorrow(THANKS) to discuss the Sloan appt. Dave reminded me that they wanted the PET before we went. He does that tomorrow with results coming back by Wed(I think). The appt is for the following Tues. Does that seem too long? Believe me, I will raise the roof if I'm told to get him in faster.

Brian, for years I worked in the addiction field(still do actually) so I really have a healthy respect for the power of a substance. It can really call your name. Right now, he is off it but I'm not letting my guard down.

Theresa, we should establish a freak out hour. Once a day, a virtual freak out...

Kelly, I'm not kidding(well maybe a little) when I say I'm going to jump the MS when we finally meet. I'm honestly holding back on some of the stuff this ENT does because I don't want to come off all whiny about it. But we have not heard from him once since Dave had the biopsy.All info is filtered through the primary. Who does that???

im down with once a day...but ur a newbie...u may need multiples , or maybe that is just what i needed as a newbie

Theresa, I can easily sign up for 12 freak outs a day.

So, here's my two questions of the day(like you guys believe it will only stay at 2).

Are there people who have had clavical node involvement and not had it spread into the lungs, chest,etc. Or is it pretty much a given if it's there it has spread (that was pretty much what the MD said).

Day of dx officially was yesterday. We have had biopsy, MRI and PET is today. Appt for Sloan is a week from Tuesday(unless with Brian's help we can move it up).
Our GP recommemded that we also see a local team for an opinion. Dave seems to want to wait to see what the Sloan guy says. That makes sense to me since the other place isn't a cancer care center which is what everyone here seems to recommend and Sloan is.