Well, we got back the reports and not surprisingly it's positive. My head is spinning. I don't even understand what I just heard. The only thing that keeps ringing in my head is him saying "this is a nasty cancer."

Can someone help me interpret what I heard(not in terms of dx) but just in terms of understanding the lingo. I don't know what is good or bad here.
It's SCC on the base of the tongue(that's the back,right?). The tumor is 2-2half centimenters(is that big? Small? Doesn't matter?). The MRI shows "node involvement on the same side of the tumor. His concern with that was that it was on the lower nodes(?). It doesn't appear to have crossed the "midline" and the MRI doesn't show node involvement on the other side. However, the Dr seems to think the PET scan might show up more stuff(I think his concern was it being in the lower nodes(?).
He goes for the PET tomorrow. We are setting up an appt at Sloan next week.
The only encouraging thing I remember him saying is that this kind of cancer responds well to radiation.
I want to throw up but I'm trying to just figure this all out.

Susan

Again, relax. While it's true this cancer is nasty, nothing in the DX sounds out of the ordinary and many many people here have had the same DX and bounced back quite nicely.
My tumor which was also at the base of the tongue was 3.6 cm and had spread to two lymph nodes on the same side (left). The base of the tongue is actually on the bottom of the floor of the mouth in the back. It's GOOD that it has not crossed the midline.
Just remember that PETscans have a very high rate of false positives (almost 40%) on base of tongue cancer so don't panic if the Petscan sounds omnious. According to my 4 Petscans, my cancer had spread to the entire right side of my tongue, yet two biopsies and massive surgery later, it turned out that not a single cancer cell was on the right side despite the very clear indications on the Petscan. We were worried sick needlessly as I had not discovered OCF the first time around. My ENT had to overrule my RO and MO and just say no more Petscans after the 4th false positive, just MRIs. But on the other hand, if the Petscan says no problem, it is very accurate that way and does not usually have a false negative since it is so sensitive to sugar uptake.
Good luck as you start on this journey
charm

Thanks Charm, I really admire your attitude. I'm trying to just stay focused on getting the correct care. Just talking to the staff of the MD we are trying to get a consult from made me feel better.

Does the size of the tumor matter? when I was looking at the staging stuff it said up to 2 centimeter was stage 1,etc. I know that's not all they take into account(for example I'm guessing node involvement automatically puts you in stage 4. Yes?). But I took it to mean the size of it is important.
Dr doom and gloom also said the location was bad because it was on the base. I'm guessing because it's harder to get to? I just stopped asking questions because his way of responding is so negative and I don't totally trust his responses.
I much prefer to come here and wait to talk to a different MD.


He also said it is standard for people to get surgery, radiation and chemo. But looking at people's signatures here I noticed a variety. Do you think by standard he meant for base of tongue?

Susan

Yes, I think he meant that was standard for base of tongue. But don't be too hasty on the surgery. I am proof that you can always do that later if need be. As for the comment that the location is bad, what he probaby meant is what every one of my doctors, the RO, MO and ENT (even the Plastic surgeon who did the flap) were very clear about: that while they were very very good at taking a tongue and base of tongue apart to get at the cancer, they were not so good at putting it all back together. But again, surgery might not be needed.
Sloan will give you their recommended treatment

Susan - I posted something to you a couple days ago - We are only a few weeks ahead of you so I know the whole head spinning thing. My husband's dx is the same as your husbands. First, you have to calm down. Easy to say I know - but I was a wreck, couldn't stop crying (didn't do it in front of him or the kids) but it was quite obvious as my eyes were basically swollen shut -(btw, spoons in the fridge/freezer work wonders for swollen eyes) - I had to go to my doc for some help, if there was ever a time for xanax it was then. Seriously, once the shock wears off and he gets into treatment it the day to day, moment to moment stuff gets easier. You have got the be there for your husband. Both Ken and I are keeping "books" - all of his records, questions, everything the doc says - that way we have two sets.
Ken (my hub) is on round 2 of chemo. We just finished up his second day - the lymph node has gone down from a golf ball to a pea. Our goal is to avoid surgery. Get yourselves to a doctor or team of doctors that you trust - and take care of yourself! I'll pm you my phone number if you want to talk.

I think Dave would love to avoid surgery. For all the obvious reasons but also because his work(which he loves) require lots of talking.
We have an appt on the 23 at Sloan. Hopefully, a lot of these things will become clearer to us then.

I really do recognize that some of my questions are probably very elementary and "blonde"(I am a natural one). But I hope you guys will hang in there with me until we get to talk to someone who will answer these questions. We are done with the current ENT.

What diagnostic methods determine exactly where the cancer is.
For example, if it was on the tongue but spread to the cheek, jaw,etc would you know that through the biopsy and/or MRI? Or can that only be determined through the PET?
Originally, I thought the ENT said the PET checks to see if it has spread to the lungs or far away places.
I guess I'm wondering if they would already know if it had spread to other places (jaw, cheek,etc) with the the MRI and biopsy.

Also, when people say things like the CA was in 2 nodes what test determined that?
He just told us it was on one side(from the MRI) and low(which was bad).
Lisa, thank you for your post. If you saw me walking around, you'd be amazed. I am the epitomy of calm on the outside. We haven't said anything to the kids or family and I guarantee you no one knows I'm freaking out inside. Today, Dave told me how much he appreciated how I calm and focused I was in handling this.

That is why I so appreciate this board. I come here and freak out then I walk away and act calm!!!

Susan,

Surgery doesn't always mean tongue surgery. My husband went in to the hospital for what he thought was a one hour surgical biopsy of a swollen node. 6 hours of surgery later, he had a neck dissection with 8 nodes removed and was diagnosed with BOT. The surgeons kept taking biopsies until they finally found out where the primary was. Took out nodes until they had 3 clean nodes in the chain. We are a year out (don't ever have surgery on Friday the 13th) and all is good (albeit a slightly new normal!

Dale says that the surgery was the easiest part of his entire treatment.

Hang in there you are doing all of the right things..

Do you know I'm actually getting jealous of people's Drs here!!! If it wasn't for this site I would be walking around even more of a crazed zombie...
And I know my questions sound so obvious but none of this was explained. Can I assume if he told us Dave has a tumor on his tongue and BOT(I'm getting the acronyms down) that the tongue is the primary???

And also,I noticed quite a few people here had node involvement without it spreading. He told me that there was a good chance of it having spread to somewhere else like the lungs or in the chest once it gets in the lymph nodes.
I asked if there was something in the tests that made him think it might have spread more and he said "no, but it's more likely to have."
Is that a resonable speculation?

By the time, we get to a normal MD and I can get ask these questions I will probably hug and kiss him(hope I don't scare him off).

The tongue is certainly the primary. That it is in two places on the tongue is not so common. Anterior tongue cancers are common in smokers, BOT cancers are common in people that are HPV16 positive. The two etiologies for the disease are completely different and not synergistic. So at least for me (and I'm not the guy that has seen the most patients) I have never seen a patient before with two tongue cancers in different locations, that are normally so different from a cause standpoint. Two on the anterior tongue yes, but not one on each end..

Node involvement, especially bilateral like mine, is dangerous. This means that besides going through the normal pathway from the side of the primary to the neck nodes on the same side, it has had time to go to both sides which means it has been there longer. This may be a function of the BOT. That he did not address this earlier, (there surely must have been some discomfort on the anterior tongue) makes me wonder why.

Nodes are part of your body's immune system, and the lymph system that they are part of is connected throughout your whole body. The nodes in your neck to the ones in your upper chest, underarms, mid-chest (mediastial), abdomen, groin, all one big system. So when cancer gets into it, or equally dangerous, the circulatory system, it has free access GIVEN ENOUGH TIME, to metastasis to vital organs far away from the primary. That said, I had very advanced stage four bilateral mets, and everything at the time of the finding was still in my head and neck. Lucky for me, or I might not be typing this. Once it gets out of the local region, (H&N) it is harder to eliminate. I state this so that you will understand this, not to spook you. This is the reason that in work up, he needs scans of his chest for sure, as that is the next likely place for it to go, done. The other place is the brain which he will automatically get scanned when the do the H&N MRI The disease moves at different speeds in different people. Some people it seems to move slowly, some it runs like wildfire. I don't think the doctor can possibly know without scans where it is and where it is not. This is why he needs answers from scans, not the general "opinion" that bilateral staging is advanced (yes) and likely elsewhere as well..... (not necessarily so) - I am living proof that ain't so.

the node involvement means that it did spread. ALOT of the people in this forum have node involvement. i never asked how many nodes were involved with andy...the MO just told us "multiple"--one being 4cm and on both sides of the neck.

at least now yall know and can move forward with treatment.

i also came here to freak out. its the safest place. family and friends tend to freak out when u freak out and alot of freaks running around is the last thing dave needs. i also would go into another room, outside, etc and let it all go. i always tried not to loose it in front of andy.

later on u will probably have to fight him every step of the way. read up on the caregiver forum. some of us have some impractical ways of getting things done. but if it works...run with it.

take a deep breath and move forward. we are here whenever u need us.