Hi Susan. I've been off the boards here for the past few days because of the 40" of snow we have had since last Saturday. My husband John had a CT Scan with IV contrast of his entire neck and chest when he was diagnosed. His ENT put a needle in the "lump" in his neck and withdrew fluid which was a malignant lymph node. John's tumor was pretty big and was "right to midline" tongue base. Before John started treatments he had a PET which was clear except for the lymph node and base of tongue. Our MO also told us that this type of cancer "CAN" go to the lungs. Whenever John has follow up scans they also scan his lungs. Keep posting your questions and take lots of notes at the doctor visits. It can be very overwhelming. Hang in there. Wanda

I'm really taking the advice to heart. Actually, we are. Dave is not ready to come on here but asks what folks have to say about various things.
PET done. Spoke to Dr Chicken Little armed with questions from here and very firm when he tried three times to give me the bum's rush. (You should have heard me when he asked if he was going to "HAVE" to go over this with Dave as well).Bad enough all this was done over the phone.

He pretty much confirmed the info I mentioned before. SCC,BOT, from MRI and exam has not spread to other areas like tonsils,sinuses,etc but need PET to confirm. Tumor on tongue about 2-2 1/2 . From MRI node involvement only on one side(still a bit skeptical but thinks it didn't cross the mid line).

Oh didn't know how many nodes on right side.When I asked that he said "I don't know. Let's see the report said from 1.8-2.6. I said"so there's multiple" and he hesitated and said "seems it." Is that an unimportant fact???
Oh, he's not a fan of Sloan but tough we are going. I'm not a fan of his...After the PET we should be done with him.

So, I started a folder and notebook. Dave and I divided up tasks that need to get done and are trying to do practical stuff related to this and just go forward with our very wonderful lives...
whoever thought doing the taxes would be a pleasant distraction???

I had 2 affected nodes. I also went to 5, count them, 5 different docs and 3 wanted to do a ND and my last, Moffitt, a CCC, said no way Jose, the IMRT will take care of the cancer so I didn't have a ND and I'm am SOOOOOOO glad I went to 5 docs and SOOOOOOO glad I ended up with Moffitt and I'm SOOOOOOO glad I didn't have a ND.

David, do you mind me asking what made you keep going? I was speaking to Brian earlier(wow what a resource and a nice guy!!!)and he also spoke to me about the differences in opinions. Sloan not only insisted on all the reports but they also want the raw data(slides,etc). Of course, I realized treatment opinions would vary(although chicken little "assured me" that his tx recommendation was the only one they would do. Sigh).
But I guess I figured a pathology report was a pathology report. Or an MRI was an MRI.

[quote]But I guess I figured a pathology report was a pathology report.[/quote]
Depends on who is examining the slides. There have been instances here of people being told that they did not have cancer -- only to find out that they did when the slides were later read by pathologists at a CCC who specialize in head and neck cancers and see this every day. They can pick up on things that run-of-the-mill path labs miss because those labs don't see oral cancer often enough to recognize subtle differences. This is why Sloan wants to see the slides, rather than rely on another pathologist's interpretation of the slides.

Makes sense Leslie. I guess I always assumed that the second opinion was for treatment recommendations. The scheduling person at Sloan said she has seen it go both ways. Situations like you described and then folks who were told they had cancer but didn't. That's why they insist on reading all their own stuff. Apparently, before we even get there they are looking it over for their own thoughts on it.

The ENT guy said his practice(three guys) sees about one case of oral cancer a year. Sloan sees 3500. A bit of a difference. The strong message you guys sent me about where people should go is so important. I hope the word is out there.
The possibility of mistakes on something so important is scary.

Susan,

What kept me going was not liking what I was hearing. I first was told NO SURGERY, then SURGERY, then RND followed by rad/chemo and I have a 60% chance of surviving 5 years (Dr Death), then partial ND followed by rad/chemo and a 70% chance and finally Moffitt said NO surgery, chemo/rad and a 90% chance....easy choice for me at that point but I always wondered if the next Dr would have said NO CANCER. lol

David, that reply literally cracked me up.

I've decided I might need to start a question of the day column here...
but I can't stop at just one...

1. Dave's biopsy was a week ago Friday. He went in with mild mouth pain and came out with moderate mouth pain. Of course with his nagging(I mean loving) wife at his side he is also trying to eat more. Is it normal for there to be this kind of increased discomfort post biopsy? I know everyone is different but wondering about folks experiences.
Since the MD didn't know about the magic mouthwash he is trying to make his own version of it. Any suggestions to help with the discomfort would be appreciated.

2. The "thing(I've decided to be scientific in my terminology) in his mouth is getting smaller since we first noticed it. Certainly there still there but changing. Is it a concern that what the MD at Sloan will be seeing is different than what Dr Chicken Little saw?
Normally,I would say smaller is better but not sure what the new normal is.

I found wikipedia actually gives a good description of magic mouthwash if you want to start there . I'd suggest getting a good recipe from a trusted source. Maybe call up Sloan and see if they have anything they can suggest.

When I had my biopsy done back in 2008 my "thing" also got "smaller". This was because after they biopsied a piece off, it was no longer rubbing against my teeth, getting iritated, and swelling. It is possible that it might be shrinking, but I'm sure Sloan will be able to tell lots of info from it and the reports no matter the size.

Good luck!

Susanne,

Do you know a pharmacist? My local Walgreens in a small town knew what this was and had it ready for me fairly quickly. Maybe your MD can check with a pharmacist or you can direst him to one.

Kelly