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.

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.

Susan,

Read my Signature Line, BOT, Met to 2 nodes, HPV+, NO SURGERY, Stage IV, Tx consisted of concurrent chemo/rad and results = 100% OK almost 4 years later. Get to Sloan. Nuff said!

David, I literally just got on with a pen and paper ready to interpret people's signatures. True story. And in my rational moments I know I'm trying to figure out things that I shouldn't. But I'm also trying to sort out what the MD said vs what people say here(and my money in on here) till we get to Sloan.

For example, MD told me he didn't see anything specific in Dave to indicate lung cancer but it is very common if it has gone into the cervical lymph node. (By the way, he said this without prompting. I wasn't even thinking of lung cancer. I was too busy trying to figure out what oral cancer is). It's a hell of an image to sit with while he is doing his PET.

I can't tell you how much I want to sit across from a calm, bright person and get some answers. Except for one 25 minute office visit all these conversations have been on the phone with Dave or I and then comparing notes. Not a good way to get info.I tell you.
And David,I love your signature line!!!

Listen or should I say DON'T LISTEN to that chicken little of a doctor. As long as I've been here, HPV- or not, I don't remember hardly anyone that ended up with lung cancer as a result of OC. Yes it's a destination once it leaves the nodes but in my experience here it rarely happens.

I would really try and wipe out your memory of what has previously been told to you and just focus on what they say at Sloan, and us of course. lol

12 it is! u dont have to use them all...and u can request more.
i believe the PET will shed light on the spreading.
i would stick with sloan for the opinions.

In my shower ephifany(isn't that where the best ones happen) I realized why I was so nuts. The obvious ,of course(the not so good news). But that also the delivery of the news.

But I keep coming on here because this is where I get my encouragement. I racked my brains and realized this MD has not said ONE encouraging thing.
Example 3000---when he said the MRI showed it was all on the same side(or didn't cross the "midline") I said "well, that's good." and He said" I guess but I did feel something on the left side we'll know more after the PET." Now I'm not doubting that he may be right(although I hope not) but wow leave me with something.

And David thanks for calling him a chicken little" It cracked me up.

Does that make sense???

Well Susan, I was going to say what others have said. Spend your energies on getting the tests done, getting your notebook gathered with all pertinent information (like business cards from each of your doctors and test facilities because you will have to fill out info sheets a million times, pages for notes, written test results, questions, etc.) and conquering household things that will have to take a back seat once you start treatment.

In other words, do things that you can control and wait for the experts at Sloan to answer your questions (you know the ones in your organized notebook ;)) based on those tests and give you their diagnosis and treatment plans.

And to keep the anxiety down, I would take Brian up on that phone call to see if your appt. can be moved up.

Been there, done that, got the grey hairs to show for it,

Deb

You also might consider taking a voice recorder along and asking the people you see at Sloan if they mind your taping the appointments. You should also plan to take notes, but that way you will have a record of everything that was said -- and that could help you with follow-up questions in the days after the appointment as you digest the information you were given.

Susan,

Being a smoker my ENT wanted the full workup on the lungs. He said that the cancer could go to the lungs but generally in much, much more advanced cases.

Also, the cancer that has moved to his nodes is Squamous Cell Cancer (SCC). If it went anywhere else in the body it would still be SCC. So if it showed up in the liver, it�s not liver cancer, or in the brain, it would not be brain cancer, it�s SCC in the liver or SCC in the brain.

I say this because lung cancer is not SCC and neither is brain cancer. Lance Armstrong dealt with testicular cancer that spread to many other organs, but it was always testicular cancer.

Kelly

Take some one with you with a list of prepared questions to ask, Get them to qrite down everything if possible, then you can discuss it when you get home. 2 heads do a great job when you combine thoughts. I had My G Friend, my daugter that is a charge nurse in a heart unit and my daughter in lwa another RN with me and they did a good job dor me with questions and such.

I have not been on in a while, but I wanted to say that you are geting great advice here and really do not have anything to add. I will say that you can and will get through this. It is a tough road, but you have come to a great place for support.

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

Magic Mouth Wash

1/3 each Maalox
Benadryl Elixir
2 percent�Viscous lidocaine

1 pint. �

2tbs every 4 hours, swish spit

This is the formula that I have been prescribing for years.

Kelly, since I'm in polite company I won't tell you where I want to direct this doctor to go.

Jen, I think you are right that "the thing" is shrinking because it is less irritated. And even if it is smaller they will still see what they need to...

Jerry, thank you. And Dave thanks you. He used the formula and it gave him relief.
He's now taking a day to drink his calories and give his mouth a rest(good he's normally a quiet guy. My mouth never takes a rest...). Is a week post biopsy too long to be feeling this?

Hi Susan,

I just read this thread to catch myself up...man, you have been busy. The beginning is the hardest part. You are flooded with all this information and jargon that you don't understand and you have to hear it from someone you may not like too much. Finding a good doctor/team of doctors can be a challange!! I started with one doc and had 3 surgeries then switched to my current doc who I like very much. I did go to Sloan for a 3rd opinion and since they said the same thing I stuck with my current doc. I saw Dr. Shah at Sloan..is that who you are seeing? He was a nice man, very smart!!

I understand why your husband doesn't want surgery...it is hard. I hope he makes it to the forums sometime. As I'm sure you already know, the people here are a wonderful help. There is just something about talking to people who know how you feel that makes it all seem easier to handle.

I look forward to hearing how your appointment at Sloan goes, I'm sure you will fill us in:)

Yeah, busy is one way to put it---nuts is another. Unfortunately, because the MD we had (how can I put this tactfully) sucked I really had to get on the case and get answers elsewhere. And you guys were elected.

I wanted to ask the MD a ton of questions but given his presentation I knew it was better for Dave if I just stopped.Dave is practical but no one should be given this info in that manner. But man,I craved answers.

I tell Dave what I'm learning here but I think he needs to absorb stuff before coming on himself. He is an info gather too but we work at different speeds.

Shah was one of two doctors recommended. We went with the other one. Not because we heard anything bad about Shah at all. Just the other guy was highly recommended to Dave by two different MDs who he trusts and who don't know each other...

Susan:

I am glad you are getting another Dr to review. My experience was that good Drs encourage a patient to get second/third opinions. !st CCC I went to was great very through, 2 of the Drs came from another CCC. He said he would go to Duke to get thier opinion and find out who I was more comfortable. In fact they set it up. At Duke, which is very good, one of Dr who many years ago trained at MD Anderson, told me if I was not happy with treatment program, they would set up appts at MD Anderson. I ended up doing treatments at Duke but all the "good" doctors seemed to be interested in helping me. Maybe I was lucky. Good luck.

Thanks Bill,I honestly can't imagine having to stick with this Dr. He said we didn't need to go to Sloan because he was so sure what the protocal would be. Then I came on here and got educated about CCCs, saw the variety of treatment options people were given,etc.

But even if we liked him I would want to get another opinion. I'm really hoping the guy from Sloan turns out to be someone we can work with. So far, the staff has been very helpful and kind.
It was nice to look at your signature line and see all those 'all clears."

I agree with Bill..I think a good doctor really cares and would encourage a second opinion so the patient feels comfortable.

It's the pompous assholes with God complexes that get offended at 2nd opinions...sadly I think it would be hard to see anything past their egos, and surprising that they learned anything in med school.

Interestingly, his idea of a second opinion was for us to go talk to the team he would work with locally. His reasoning for us going there was that it would enable him to stay in touch and "help us." He was so confident of the treatment, he just didn't think it mattered to go elsewhere.

What I find worrisome are the folks that take MDs as the final authority and aren't comfortable asking questions or pushing. This guy would be a disaster for them.

We are waiting to hear on the PET scan. This waiting is tough. And his gloomy presentation doesn't help.
It's surreal to look at Dave, see him feeling good (other than the biopsy soreness) and think this is going on.

and for the question of the day:

I noticed in a thread that some folks were saying that the MRI might be more accurate than the PET. I'm wondering because the MD said the PET was what would really determine things clearly. For example, the MRI only showed node involvement on one side but he said the PET was clearer and might show involvement on both sides.

Susan,
You certainly are taking the experience with Dr. C. Little with good humor. Good luck with Sloan.

Susan-We went with the other one also. If we are talking about the same doctor, very young and cute, he is wonderful. He had a great rapport with my husband who was quite the ball buster. It was a little difficult getting straight answers out of him though. Had to push him for the truth. All in all,very competant and I'm glad we found him.

Now...wait...after all the docs I met..not one was young and cute!!! lol

Yeah, young, cute and feisty??? and we have Dr chicken Little so far???

We got the results of the PET from our GP(Dr Chicken little hasn't bothered to let us know yet).

It pretty much confirmed the MRI. It did note a possibility of a small node on the other side which the MRI didn't catch. (although I don't understand how they can say it "didn't cross the midline" if there is a node on the other side now).

But no spread anywhere else. YAY. I can give my over active imagination a rest for a bit.
So, the tests are in and Tues we go to Sloan.

when folks have gone for second opinions(I count this as our first...) do the MDS usually talk to you off the report or do they do their own exam? Just wondering what to expect.

When we went to Sloan my husband was still being treated locally with chemo. We sent all his test results to Sloan ahead of our visit. They gave us their opinion based on them. At that point we were told that they woudn't have done anything different up to that point so we continued with treatment here. When it became obvious that it wasn't working we went back and my husband got on a trial. From then on they took their own tests.

Susan,

Midline is for the tongue. The nodes are a completely different story.

I know my CT of the nodes showed no involvement and my RO blasted them anyway just as if they showed cancer. The doctor at Penn who I got my second opinon from said he would do the same.

On the bright side I only have to shave a small portion of my neck now.

I don't quite get the midline thing but they seem happy about it. I'll take happy where I can get it these days...

I'm not sure if people read about this chef who had tongue cancer. Interestingly, the treatment he really had to look for seems like protocal in many cases now and that was only a few years ago.

There have been several threads about Grant Achatz, the Chicago chef. See here and here and here and here and here.

When I had second opinion at Duke they did there own biopsy and test. Although Baptsit Hospital (a CCC) provided me with all of the tests results, CD's etc. Duke looked at them but wanted tyhier own staff to look at. I was all for it, the more experts that looks at your tests/treatments the better, I think. I also like teaching hospitals for that reason...because I was on a special test protocol sometimes I would have 2 different ENT, Rad Drs look me over on two seperate days plus a few residents. A couple of times someone would see/find an issues and bring up with the others. In my simple way of thinking I was hoping that 6 Drs reviewing my treatments would be less inclined to miss something.

Bill, I like your" simple way of thinking." Makes lots of sense.

Sloan did ask that we get the actual tests(slides, CDs,etc) sent there. Given our lack of confidence in the MD I was relieved about that.

I�m assuming the midline he is referring to is the �line� running down the center of the tongue and through the oral cavity. It is my understanding if you have a tumor on the right side, the threat of spread is greatest through the right side of the lymphatic system (lymph nodes in the right side of your neck). The cancer typically doesn�t �cross the midline� and spread from right to left side, unless you�ve already had radiation. I�ve recently been informed by two different doctors that if you had radiation therapy, this can cause fibrosis which could change the course of lymphatic drainage.

I thought I understood it to be that too. But he did say it didn't cross the midline but there is a possibility of a small node on the other side. He also explained he couldn't tell if it was malignant but the MO is to treat that way because if it walks like a duck...etc...


It has been amazing reading the different tx possibilities on here after being told there is only one treatment possibility for my husband.
No surgery(because of location), 7 weeks of chemo and radiation.

Tues we will see if Sloan agrees.
Still trying to figure out if we should go for one more opinion after Sloan. (hard to count this guy as a real first opinion). We are leaning towards waiting till Tues and seeing what Sloan says. We have two other places we can get in with quickly if needed although I guess I'm hoping it's not necessary...

My situation is totally different than your husband. I found out 1/6 that I have a recurrence on my tongue (right side, same area as original tumor). The PET scan which was done 2 weeks after surgery (too soon) showed some hot spots in some nodes on left side (small). Doctor felt they were reactive and did a FNA (fine need aspiration / biopsy) of one of the nodes and no cancer (but a FNA is just a sample of the cells). However, I�ve had multiple doctor opinions so far and most still want to do a neck dissection on the left side or both sides. I�ve already had the max radiation dose to the right side, but radiation to the left side is still a possibility. Went for a 3rd opinion this week, and this doctor wants to do a repeat PET scan (in a few weeks), before going down the surgery path. The surgery also involves removing up to half my tongue and possible reconstruction (free flap).

They could do a FNA on the node that light up on the PET, but my guess is they will likely want to radiate both sides of the neck to ensure that the kill any cancer cells there. I didn�t read the entire thread � are they talking doing a neck dissection also?

This is a very stressful time you are going through. Once you found the right doctor and start treatment, I felt my stress level decrease. Although the treatment is not easy, but doable. I wish you the best.

Susan, your responses have been very helpful to me. The original ENT was awful(understatement) so we are really waiting to hear from Sloan to get an idea of what the tx options are.

The ENT has not even bothered to call us with the PET results(they came back Tues). My husband just happened to be in our GPs office for for something else and he called in to get the results of the PET.

This board has been an incredible resource in the meantime since our MD info is so limited. It is tough getting a hard dx and not being given guidance on what to do. We happen to be resourceful people but I shudder thinking about folks that deal with MDs like we have that are not educated in general to the medical world. Makes me appreciate the advocacy work that goes on here..

So the "treatment plan" we were given is very general so far. He was very definitive in his telling of it and he may be right but I want to hear it from someone who inspires more confidence.

Susan I had a pet that showed a hot spot too and almost stopped my tongue suregery and neck dissection. It was a false positive. They thought maybe lung cancer along with OC. I have had a few pets since but have not much faith in them.

Jim, first let me say that I just read another post about your history and if I was wearing a hat I would tip it in respect to you. Your attitude is amazing!!!

I did read that PETs can have false positives but I thought that was primarily after radiation.
He does have small nodes on each side that you can feel(more on the same side than the opposite).
I guess that the only way to know if a node is positive is to biopsy it or do the dissection,right?
I guess that's the main way it would affect a tx plan is whether they need to do the dissection.
I was just confused by this it didn't cross the midline but it's on the other side stuff...

I also just decided I'm going with the there are no stupid question theory:

In people's signatures when they mention nodes is that how many nodes were discovered to be "hot spots" or is that nodes that were identified positive for CA???

About treatment recommendations: FYI, every year the National Comprehensive Cancer Network -- an alliance of the country's leading cancer centers -- publishes Clinical Practice Guidelines in Oncology. These are the "best practices" treatment recommendations based on input from the 21 cancer centers that are part of NCCN (Sloan is one).

The 2009 guidelines for head and neck cancers are available here, on the main part of the OCF site.

Susan,

I�m not sure if anyone else mentioned to you, but I�ve found it helpful to bring a recorder to each doctor appointment. My old tape one broke and I just bought a digital voice recorder � a much better option since I can now save the file to my PC. I�ve also noticed that if a doctor refuses to let you record your conversation, this is a red flag to stay away from that doctor.

Also, ask for copies of all tests � biopsy reports, PET scans, blood work, etc. You will need these if you go for a 2nd or 3rd opinion. I also kept a binder with copies of these reports that I would take to the doctor appointments. And I recently scanned all these reports and saved them as a PDF file on my PC.

Also, you will need a CD with the PET scan, so ask for it when you go. Most places can give it to you that day or send it to you. And when going for a 2nd opinion, that hospital normally wants the original biopsy slides sent to them.