Hi. I'm not sure if i should post here or on the caregiver board. Just got back from the ENT with my husband. He was told he has tongue cancer with node involvement. I was surprised he could tell this before the PET and MRI (we go next week) but I guess he does it from look.
The guy freaked me out. He was literally doing deep breathing exercises and seemed rattled while talking to my husband. first time we met this guy so I can't tell if he was giving my husband a "death sentence" or just wasn't used to telling folks they have cancer.
This may sound like a stupid question but if it is in the nodes in the neck does that usually mean it has spread elsewhere? He said the nodes weren't bad but he "didn't like" that it was on both sides.
He really made feel awful(along with the news). any help would really be appreciated.

Susan

Relax and take a deep breath. Then relax again. Sorry you had to join our little club. Please don't be so alarmed about "node involvement". It is very very common for patients with tongue cancer to also have some lymph nodes involved. In fact, it is so common, that many posters here have had Neck dissections (ND) [the surgeon takes out the lymph nodes to see if they have cancer]. This is not pancreatic cancer. It is NOT a death sentence.
Your question is not stupid. While it would be better if the cancer had stayed in the tongue and not gone into the lymph nodes, it does NOT mean that it has spread anywhere else. I had lymph node involvement and it has not spread to my lungs, etc or anywhere except those nodes and the tongue
Charm

Welcome, Susan. Caregivers Rock! Most people on here have had node involvement and I don't think it neccessarily means anything more than that, though of course, it could. Mine spread to the nodes on the right side and it was dealt with by radiation and chemo without surgery. Others have had both and some surgery without radiation or chemo. In other words, there is a wide range of variety. ENTs are on the front lines of this fight so it sounds like you may have a newbie there if he's not used to dealing with this. You may want to check out a comprehensive cancer care center where they are devoted to nothing but. You will no doubt hear that numerous times. Meanwhile, gear up cause this means war and info is your best weapon. This site is loaded with info.

Welcome Susan,

Did your husband have a biopsy? It is the only way to diagnose oral cancer.

This disease should not be handled by ENTs who do not specialize in oral cancer. Find a CCC (Comprehensive Cancer Center) and have him see an ENT there.

My best to you,

Susan,

Here is some information about CCC's provided by Leslie B to another new poster (hope you don't mind, Leslie, but nobody can say it better than you!).

Hope it helps.

[quote=Leslie B]...you will see so many recommendations here to get an opinion (or two, or more) from a comprehensive cancer center, or CCC. At such a facility your husband's case will be evaluated by a "tumor board" of medical professionals from a variety of specialties. They will discuss his case and come up with a treatment plan. Many CCCs have specialized head and neck cancer clinics -- and because these cancers can affect so many vital functions, it is critical to have a team of professionals who are familiar with this disease working together for the best outcome.

To learn more about CCCs, you can start here Another source of information is the National Comprehensive Cancer Network, an alliance of about 20 of the country's leading cancer centers. It's this group that devises the annual treatment protocols used by hospitals across the country.
[/quote]

Wow. thank you so much for the quick responses. I think I found a sane place to be.
He literally just went to the ENT today.So, the biopsy was done today. It obviously wasn't looked at yet but he assured us he was positive it was cancer(maybe by history? 67 year old male who smokes with a "wound---for lack of a better word) on tongue.
He also seemed very sure it was in both nodes. How does one know that without a scan of some sort. Don't nodes sometimes get big from infection(ie-my husband has a cold).
He also told us the treatment would probably be 7 weeks of combined chemo and radiation and then a "mop-up"(surgery,if needed).
He was so nervous telling us that I kept wondering if he was trying to give us an unspoken,get your affairs in order. I have never seen a Dr that rattled. it was scary.
We are not going to stay with him. I think the advice to go to a center is excellent. but we did go ahead and schedule the MRI and pet.
Is a pet scan common. I guess given his reaction I thought he was ordering it because he thought it spread. How does one have so much info just by scope and unread biopsy?
Also, do folks have any opinions about these "cutting edge" technology I'm reading about a la Sloan or Mayo,etc.
Again. THANK YOU. REALLY.
One more thing he also told him he would need a feeding tube. at what point is that done???

Susan,

Like was said before, THERE IS NO WAY THAT DOC CAN TELL IF IT'S CANCER WITHOUT THE RESULTS FROM THE BIOPSY.

BTW what did he biopsy? The tongue, nodes on one side or both sides? Typically the path reports will take a week or 2 to get back so hang in there.

Jumping ahead, if we assume the path comes back positive, I would definitely get to a CCC:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

I personally would not let this ENT oversee the Tx.

Again lets not get to wrapped up in the Tx until we know what the path report says.

The ONLY way to diagnose oral cancer is with a biopsy. That being said, your husband's symptoms and smoking history are not good. He must cease all tobacco use IMMEDIATELY. People who continue to smoke after diagnosis of oral cancer do not survive.

I'm sorry if this adds to your stress, but others here will agree with me.

And, you have found a sane and caring place to be.

i think i'm going to move in to this forum. I can feel my sanity slowly return as I read the responses and different threads on the board.
My instinct on this Dr was no way would we continue(I'd at least like one calmer than me).
I did think it was odd he told us so much already. I just figured that they could look at the tongue with a scope and see that it is irregular. In fact, he said that even if this biopsy came back clean he would keep going because he was so sure. I don't believe he biopsied the nodes but I will check with my husband. I thought he said he felt them and that he could see there was involvement on both sides.
And good advice, on not jumping ahead on tx issues. I guess I was responding to all the info thrown at me today. I need to slow down. it all just seems unreal.
I've been married a long time and am still madly in love with my husband. I just want to be supportive in every way possible.
Catherine, he did stop smoking immediately. He's done. And I agree it's essential.

Susan,

My ENT was much calmer but did tell me on the oral exam that he thought it was cancer, as he was getting ready to do a biopsy. He did the biopsy right then and I had the results in two days.

He said he would be very surprised if the biopsy came back negative. It was clear he had seen this before. He was right, but I did not go into overdrive until the biopsy results came back.

I think all of us have had some combination of a PET, CT or MRI scan. I got a CT many here have had PET scans others MRI�s. These are diagnostic tools and will help with the staging process (determine what stage he is at) its part of the process and you can�t draw ant conclusions from it.

I looked at proton therapy. The newest latest and greatest treatment for cancer. I had great advise and second opinions from two CCC�s. At the end of the day I chose the recommendation of the CCC�s and did IGRT radiation. I did not need chemo or surgery .

If you have questions on the latest treatments, please post them here. There are a lot of pro�s here who know the in�s and outs of the latest treatment options.

Kelly

I hope it's ok that I'm answering so much. I don't want to seem like I'm trying to dominate here. It's just a relief to talk to people who get it.
I won't be surprised if it is cancer. I do know that cells do look irregular sometimes. I'm not sure how he can tell about the nodes except by feel. We're also not talking much about his recommendations about tx since it seems pre mature. Also just from reading posts here,I see there is a huge variation of treatment types.
We do have the MRI and PET schedule as I mentioned(both next week). Should we meet with a CCC center in the meantime or wait for the results. I'm not really sure I want this guy interpreting them.

Susan,

This is your thread so you can't dominate it.

By the way, at this point it is not a race to treatment, it is a search for the best possible medical team and facility you can find.

It was a month from my diagnosis until my first treatment (lots of stuff in between).

Susan --

Welcome to OCF. Since you are in NYC, you may want to contact the head and neck cancer team at Memorial Sloan-Kettering. It's one of the top two cancer centers in the US (the #1 position in the US News rankings switches between it and MD Anderson in Houston), and several people here have either been treated there or gotten second/third opinions from there.

I don't know whether you can book an appointment until you have gotten a definitive diagnosis, but you can at least find out now how the system works and what the doctors there will need.

I wish you and your husband all the best. And keep coming back -- everyone here has been there, done that and can answer any question you have (or know where to go to get it answered!).

Catherine -- thanks for the kind words!

Carol went to an ENT (12/09) that has been in practice for many years. He was very calm but also very concerned when he was examining her. Almost sounded apologetic. He very briefly went over the options; radiation, chemo and/or surgery. Then he asked permission to do a biopsy. As with Kelly's post, it was very obvious to us that the ENT had seen it before. The next day Carol had an appointment with a well respected, well known ENT Dr at the hospital. (Another older doc.) He ordered a CT Scan and scheduled Carol for a Combined Tumor Board. The biopsy results in her case took about a week. The results went directly to the 2nd ENT who is now part of Carol's team. According to her pathology report it stated left tonsil, SCC, poorly differentiated. Unfortunately Carol's OC is advanced. The report does not need to be interpreted. It's there in black and white. If there is cancer then the necessary tests will be done to determine the stage, if it has spread, recommended treatments, etc. Like other posts it is NOT cancer until the biopsy says it is.

I would dump that ENT like a hot potato...

There are many knowledgeable folks on this site. Current patients, survivors and caregivers. They will tell you like it is, provide support, share their experiences. There is a lot of info to be had here. As the saying goes the only dumb question is the one not asked.

Linda

Thanks, I was wondering how folks felt about Sloan. I'm a native New Yorker so I grew up with that's the place to go. I just read the stuff on them and I like what they have to say.
Kelly, you actually answered another question I had(and eloquently too). I keep feeling this since of urgency. I hate to keep bringing up this Dr but he also said you only have one shot so you want to make it your best shot. Also, someone here mentioned that tongue cancer is particularly aggressive.

Good point on the tests not needing to be interpreted. I spoke to my husband about the recommendations here and he called an MD friend to get some names. Turns out two of them are from Sloan. One is at Beth Israel. Not quite sure how to decide...
In people's experience when you have gone for a second(someone said a third too) opinion will the MD accept the tests ordered by the previous doctor? I guess I'm wondering if they will want their own MRI and PET.
Also, can someone point me towards some threads(or websites?) that discuss these tests.
I am absolutely planning on sticking around. I feel better every time I come on and hopefully one day I can return the favor.
Oh, I did ask Dave if he did anything with the nodes. He just felt them and said he was concerned based on both of them feeling hard. Thought that represented the involvement on both sides.

Hi Susan from another native New Yorker, transplanted to PA.

Again, just so you are sure:

1. This is your thread...no need to apologize for anything. We know what you are both going through. If it turns out that he does have cancer, try to get Dave on the forum. It ususally works out that either the patient or the caregiver are active, however once in a while it's both.

2. This ENT needs some help in his bedside manner. It is absolutely wrong to tell someone that they have OC without the reults of a biopsy. Also, nodes can be enlarged without being cancerous. Right decision, not to use him.

3. You have access to one of the best CCC's in the world. Leslie (as always) has given you some great information on how to get the ball rolling so you can get Dave into Sloan. BTW, there is an OCF member that lives in CA and he came to Sloan to be treated.

4. Any scans or biopsies taken in one location would more than likely be acceptable to another doctor. They will want to read them themselves, so they must be sent ahead or at least brought with you.

Good luck with your journey and I hope that the ENT is wrong.

Jerry, thank you. I would love for this guy to be wrong. But he was just so sure about it that it's hard to believe. From reading posts I've been getting a better idea of what questions to ask Dave(I asked to be let into the room when I heard the word biopsy). Dave said as soon as he looked at it he said "that's cancer." As much as I agree in theory about the biopsy I can't imagine he would be that dumb to be that assertive about it if there was any doubt.It is very large and nasty looking.
Leslie was very clear(and helpful) so we are moving forward with Sloan. We are also calling a person who was recommended from Beth Israel(any thoughts on that place?).
Is it odd that we are moving forward without the biopsy? Have most people waited for it?

susan,
from one caregiver to another...welcome!

the PEG is normal...sometimes livesaving. the PEG will probably be put in before treatment begins or shortly afterwards. be sure and read the post on this by using the search box at the top=right of the page. u will not get alot of info on this from the surgeon, but there is tons of helpful info on here.

u can use the search box to search for anything and it will take u to threads with that word in it. very useful tool!

u are in for the journey of ur life. but stick close to this site and u will get thru fine. we are all here for u day or nite 24/7!

ask as many questions as u need-u will have plenty-and use us to rant and rave and vent when necessary.

u will eventually get a biopsy from one of the drs. its inevitable.

the lymph node involvement means the cancer has spread..that will determine daves staging, along with other factors. but as others have posted...its very common. so dont be frightened by that. it was the lymph node involvement that caught my hubbys cancer so it was a blessing of sorts.

ok, so now im taking over ur thread...lol. hope i was of some help.

[quote]We are also calling a person who was recommended from Beth Israel(any thoughts on that place?).[/quote]
A good friend of mine had a friend with oral cancer who traveled from Israel to be seen by one of the doctors at Beth Israel. The friend was going to be treated in Israel but really wanted to get the Beth Israel doctor's opinion before treatment began. Let me know if you want the dr's name; I can PM it to you.

It never hurts to get second opinions; one poster here, davidcpa, got five -- and ended up going with the final one, from a top cancer center in Florida. He has said that if he had not persisted until he found a place where he felt he would get the best treatment, he would either be dead or have a considerably diminished quality of life.

[quote]Also, can someone point me towards some threads(or websites?) that discuss these tests.[/quote]
Probably the best place to start is here. The pages of the OCF site are filled with reliable information vetted by OCF's science advisory board.

There are two search engines available to you. One is for the message boards only, and it is located in the top right corner of each forum page. The other is for the main site; you can access it by clicking on the gold "Search" link at the bottom of each forum page or from the left rail of any page on the main OCF site.

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.

Susan,
I don't know if this works for MRIs and Pet scans, but when I have CT scans,I always ask the radiation technician for a copy of the disk and report before they run the scan. Usually takes about a half hour for them to make a copy. Then you can take it Sloan or wherever. There is no charge for this at HUP.

My only symptom the first time was a swollen lymph node in the neck and my ENT was almost positive it was cancer from the feel of it. He did do a fine needle biopsy to confirm it. At this point, get your second opinion from Sloan. You want to be where the best treatment is.

Have hubby eat as much as he wants now. Try Ensure Plus rather than the regular Ensure. It tastes better and is 350 calories rather 200. Also David keeps touting Carnation VHC which is 560. More calories per swallow. This becomes very important later in treatment.

Take care,
Eileen

Welcome to the board. You have gotten a lot of infor here. I reallyu do not have alot to add, but make sure he eats as much as possible now, and anything he wants. Let us know how the biopsy comes out. I know this is a time of uncertainty. I just completed my treatment and this place was wonderful to get me through it. You both will be fine. Just make sure you get the best cancer center you can. I will keep you in my prayers.

Hi Susan and welcome....I see lots of great answers here....just one quick note. If your husband doesn't like the taste of the Ensure Plus, you can make a milkshake with it. Changes the taste a bit and you can add other stuff to it to boost calories as well. I'm sure there are some great ideas on this in one of the other forums but he needs to eat everything now he wants...make his favorites, go out to dinner, etc.

Cheryl

the comment u made about being able to put on lbs just by standing by the bakery made me laugh.
in trying to aggressively put weight on andy before his rads started, i managed to get 10lbs on him and 15lbs on me...geez!

now he still needs to gain weight...and im on a diet

its amazing how the diagnosis changes what is really important. i used to be a fanatic about dusting...now i feed my dust bunnies

If you were to ask every HPV+ SCC patient I would guess a very large percentage of them would tell you that their only clue to something possibly wrong was a totally painless swollen neck node. Many, if not all, of their first doctors put them on a dose or 2 of antibiotics before they eventually had a biopsy and found out they were Staged a III or IV. While the staging of HPV+ SCC patients may one day consider the current response to Tx or the Tx itself may one day be modified to take these studies into consideration remains to be seen. I myself was told by a well respected MO and I quote as he shook my hand " Congratulations, you don't have cancer!" If it were not for my persistant wife I may have found out to late.

It's such a relief to have found this place. We had a very nice escape since last night but now at home I can see both our moods shifting. We are calmer but I still get that punched in the stomach feeling.
Reading the posts here I'm trying to get a better attitude of understanding we may be facing a long process and we will need to have our wits about us. Blind panic doesn't help. Nonetheless it comes and goes.
Tomorrow is the MRI and the day we will also call to make appts with other DRs. We are completely sure that anyone who is more nervous than us when presenting news---does not inspire confidence.
So, a few more questions(I am trying to do searches before I ask so people don't have to repeat themselves. I know when you are on a board for a long time it is tiresome).

1. If the DR was so sure of node involvement on both sides should we have requested a needle biopsy immediately? should we be requesting one now or will the MRI serve the same purpose.
2. how common is it for oral cancer to spread to other parts of the body(the literature confused me on this). I get that the node involvement is common but what about to major organs?
For example, I noticed that Brian said he had bilateral cervical metastasis. I wasn't quite sure what that was and I always associate the word metastasis with spreading through the body.
3. I know skin cancer is somewhat easy(compared to other cancers) to diagnosis through sight. Is that true with this also? Is it often very recognizable? Perhaps that's why this Dr was able to tell us with such certainty.(still don't like his style though). Although we spoke to an MD friend of ours and she was very surprised we were given such a dx without the lab report(and I noticed folks here emphasizing that as well).

I find it amazing how easy it is to get missed with this. As I mentioned earlier Dave went to the Dr because he had this huge(and I mean huge) gash in his tongue. Since he stopped smoking(the second the Dr told him too but only 4 days ago) the gash(for lack of a better word) has started healing and receding. Given what it is now I don't think he would have had it checked out. We might have waited to see what happened and as it continued to heal(assuming it does) just forget about it. Is that common???

Susan,

1. I would wait for the path results before I schedule a FNA or an MRI or a PET.

2. It most commonly spreads to the nodes especially with HPV+ SCC. I was told that it next would spread to the lungs and brain but I don't remember many, maybe only a few, that have had a distant met since I've been on this site.

3. Don't know about skin cancer other than the pictures you see on the Web but this is not a cancer that anyone can Dx with any certainty. That's why we ALWAYS tell people to get a bio and wait for the results.

Finally, I had a huge gash on my tongue post Tx, almost as if the tongue split in 2 literally overnight and mine was associated with thrush and some horse pills takes care of that.

David, we have an MRI scheduled for tomorrow and the PET scheduled for Friday. Does this seem premature to you?
when I came on here and everyone was emphatic about wait for the biopsy, it made so much sense to me. But I'm telling you it is hard to not respond to this guy's certainty and urgency.
Ok so, I'm now understanding that met can be near or far essentially. Somehow I always associated it with CA being widespread. Thanks for clearing that up.

The "gash" ( I really don't know a better word) to use is what started this whole journey. Interestingly, before we thought about CA I went on the web(not always a good place to be) and could not find a picture of it anywhere but your description is pretty good. It's on the side of his tongue towards the back and is just like a deep open cut. Like I said the not smoking has helped it to become smaller. When he first showed me, it was very visible as soon as he opened his mouth. Now when he opens his mouth I have to look with a flashlight.
I did think it was weird the Dr didn't treat it (no matter what he thinks it is) it's uncomfortable when Dave eats. That said, his appetite is still good and he is eating away as recommended.
Theresa, I totally know what you mean about dust bunnies becoming your new pets. It's all about perspective,isn't it?

cervical = neck. If it goes for the tongue to some place else it is a metastasis, to the cervical nodes/neck would be considered a local met, to the lungs, a distant met. Oral cancer does not usually kill you in your mouth, it kills through metastasis to a vital organ elsewhere.

Susan

You have gotten great advice from everyone here as well as very pratical suggestions. I agree with all of them. Again, relax, I was Stage IV (there is no stage V) advanced cancer and I'm still here. As Eileen suggested, ask in advance for a copy of his MRI and Petscan (they had to be put on a DVD not a CD for me, although the CT fit on a CD). Then you can take them to Sloan or wherever. The doctors can read them independently so you won't have to get new ones for each opinion. I sometimes had to wait a day to get a copy made.
The MRI and PetScan should provide additional information on the size and location of any tumors or cancer. Don't worry about getting more biopsies at this time. But do NOT schedule any surgery, nor any chemo nor radiation until you have gotten a second opinion instead of this doctor's.
Keep the faith
Charm

Just read a bunch of posts and I have to say I was really impressed with the warmth, grace and humor.
Anyway, in the spirit of there are no stupid questions(and in the hope that I will have a clearer mind soon here's some more dazed and confused questions):

I described the "gash" that Dave has. I believe that the ENT biopsied behind that (back towards his throat although he didn't say anything about his throat he did say that his cancer(?) is in the back middle of the tongue). Dave is feeling soreness in a different spot than the "gash" so we are assuming that is where he biopsied.
I was figuring the gash was the CA(if it's there) but now I'm guessing it's just a symptom from it?
So, my question is in order to stage(because they talk about measurements) what exactly are they measuring? are there spots back there we can't see? How does that get measured?

http://oralcancerfoundation.org/facts/stages_cancer.htm

It's all here, you don't have to go elsewhere to find it.

sorry brian

Although there are certain characteristics of SSC lesions that may make them look similar, nobody can tell for SURE that a lesion is a SCC, without a biopsy. SCC is not diagnosed from an MRI or a scan. None of the SCC's that I have seen personally or looked at in textbooks have looked the same.

The one that I had on my tongue did not look at all like any that had seen before or have seen after.

Brian,I did read that. In fact I poured over it. Whoever wrote that did an excellent job of putting it in lay person's terms.
I guess I'm puzzled by what was actually biopsied. Again, the more I read around here, the more I understand that part of the confusion stems from the original visit.
Now, however, I feel more prepared in knowing what to ask.
I did just suggest to Dave that we postpone the MRI till the biopsy returns but he wants to go forward. Again, his decision. I won the ensure battle though...
we absolutely will not be dealing with that Dr again. There is no point. I would love to not deal with any Dr but if needed, Sloan it is.
Jerry, thanks for your post. It provided clarity.
Really , again thank you to everyone.

Pretty soon you will be ready to put signature on your posts as you begin to get finite information. As you can see from the many posters here, besides our cancer details, many have quotes that have stayed with us, and in many ways philosophically identify us.

As you can see Jerry has chosen; "Whatever doesn't kill me, makes me stronger"
Eric has; "He who has a "why" to live can bear with almost any "how"
I believe that mine expresses why I am doing things; "The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant."

People reveal themselves through their choices in many ways, and I think your signature should begin with "Chance favors the prepared mind." I do not think I have ever seen anyone come here so frequently in the beginning to glean every ounce of information out of things this early in the process. It's a good thing. It will likely help you make better decisions. Just a pensive break in thought as you continue to gather information and move forward.

Just remember two things as you continue on your quest. Knowledge and information is only as good as where/who you got it from. And what has become most important in the age of information and the web is this quote - If you don't read/search the web, you are uninformed; if you do read the web, you are likely misinformed. At least here, on this forum, what you are getting are very informed opinions from people who have walked the path, made the mistakes, and found the work arounds, and not some singular blogger that hasn't danced with this devil or had an atypical experience. Also remember that the main site is vetted by our science board, who are some pretty smart people. http://oralcancerfoundation.org/about/advisory.htm

Brian, if I saw me on this board my response would be "whoa, calm down, You don't know anything yet. Get your facts and then figure out how to respond ."
It also hit me when someone suggested that I add a signature line. I looked at others and it struck me my info would have to say "caregiver to someone who was dx with no tests or info."
What was very important to me here though was to get validation that to be told you have CA with very little other info was...um...unusual...
We are now researching Sloan and just reading their website makes me calmer than talking to this Dr.did.
This board was my anti Dr. reminded me what I know when I'm sane.That's invaluable and I thank everyone.

Susan,

I still remember vividly my emotions during the first weeks. When I read your posts, they come pouring back. I too wanted all the answers and knew that information was power as long as it was good information.

How can I simplify those weeks...we had a very poor/weak ENT...at least in the communication arena. I felt like Bill's cancer was bigger than the both of us and just making the call to a CCC was a big hurdle. In hindsite...it was just a phone call...one that the intake people at Moffitt CC got every day and once I made the call, people helped me get to the right place and move forward with Bill's diagnosis and treatment.

On our last visit to Moffitt, I noticed a quote from A.A Milne (Christopher Robin to Pooh) on the wall:

"Remember, you are braver than you believe, you are stronger than you seem, and you are smarter than you think."

Take this to heart and know that you can do this even when it seems impossibly complicated and hard. Put your "Nurse from Hell" hat on and plow forward.

Hugs, Deb

Hi Susan. Welcome but sorry for the circumstances leading you here. I remember when John was diagnosed thinking "this can't be real and I'm to young to be a widow". Do yourself a favor and stay off of the internet "googling" statistics etc. I drove myself crazy wondering if this was a "death" sentence. I remember walking around the first few weeks feeling like I was in a fog and that this couldn't be our lives. I lost my mom to pancreatic cancer and couldn't bear the thought of dealing with another "tough to treat and cure" cancer.

Thank God we are on the other side of treatments and life is good! Our love for each other has strengthened even more than I could have ever imagined and we don't take anything for granted.

I agree with getting your hubby to pack on some weight now. Even with the feeding tube in my husband lost 30 lbs. and wasn't overweight to start with. Keep posting and hang in there. Wanda

It hasn't begun until there is a start. And it doesn't end until there is a finish. This goes for everything including diagnosis of OC. He can win this fight with the right mind set and thinking. This from one who lives in pain. But I smile and go on living.

Well, I said you would find a lot of info here. You are well armed for the battle now if it comes. If it turns out that Dave does have cancer, by all means get him on this board so he can see that others have successfully fought the disease. Besides, Having another David on the forum would further our plans for world David domination, lol.

I lost my dad to pancreatic cancer too so I think it is affecting my initial response as well.
Our goal today is to get an appt with someone from Sloan. He did the MRI today so in the next few days we should have the start of what we are dealing with. And I would like that info imparted by a calm person.
That cloudy feeling is certainly there. I do know how important attitude is. I talk to Dave about the responses here and it helps both of us. Right now,I do best with blabbing and he does best with distraction. One thing I know we do wonderfully is function as a team.
And that this place is such a good place. How did people do it before the internet???

This is the best place to come and read plus make sure you post. It occupies your mind to read about others with the same disease. Good luck.

It really does help to come here. I think it will be a little easier when Dave is comfortable with me talking to people. While I respect his right on when to talk to folks(and really right now we have nothing to say...) I will do better when I can talk!!!
Just a quick question. His mouth is pretty sore. It was tolerable till the biopsy now it's worse. Is that common? What seems to help with that besides pain killers(he doesn't like taking them). anything for in the mouth? They gave him lidocaine but it's only so-so in terms of helping.

Several people have praised something called "Magic Mouthwash". Type it in the search box to see what they say about it.

If you have trouble getting started at Sloan contact me, one of OCF science advisory board members is high on the staff there.

Brian, THANK YOU. What a generous offer. Tomorrow, Dave will be speaking to a someone there who we hope knows the two Drs we were recommended to. He has worked at Sloan for a long time so the probability of being familiar with them is good. If he is unable to help,we will take you up on that offer pronto.
Dave called the ENT guy to find out when the biopsy would be in. The MD had his nurse call who was fairly cold and said she "had no idea." (Are you guys getting the idea we're not happy with this place?).
Anyway, it reaffirmed the importance of having a bright, caring, in the know person to speak to us with the facts.
Are we allowed to ask about specific recommendations or does the board prefer to stay away from that kind of stuff. Just wondering how people felt about Sloan in general that have used them.

I'm always saying how time goes too fast but these days have been long!!!
going to research magic mouth wash now...

Hi,

I, too am new here. I had a biopsy 12/16/09 and was told 12/23 that it was squamous cell cancer. Actually, 2 weeks before the biopsy, my bone marrow doctor told me it looked like squamous cells.

I am a Leukemia survivor, had a Bone Marrow Transplant in 1993. The problems I've had surrounding that were Graft (new bone marrow)vs. Host (me) The new immune system attached my mouth, eyes, and all other mucous membranes. The past almost 2 years, I had an unusual spot where a tooth had been in back of upper right mouth. The Bone Marrow Doctors set me up to see an Otorlarngologist at the same place, a major cancer center. In July an MRI showed OK, in the fall this area proceeded to get worse as I've been sick with upper respiratory problems. By November, we agreed to quick biopsy. After results I did find this forum and read some information. After a CT scan, I was told 1/6/10 that I would need a right posterior maxillary paletectomy, and it was scheduled for 1/21/2010.

Wow, talk about fast. I did manage to get another opinion at another major center nearby, and it was the same conclusion.

Had the surgery, got out of hospital 1/31/10 with a peg tube. A few days later they told me that the pathology showed some tumor cells existed in the margins and I would need Chemo, 3 rounds, one every 3 weeks as an inpatient for a day, 6 weeks of Radiation

I should be starting in about 2 weeks, so I imagine this is the best that I will be able to feel for a while. As I said, I am new here, so not sure if this is the right place to post, but wanted to get myself out there to those in the know. They fitted me with my mask today. I was glad that I had read a little about that beforehand, or it could've been a lot more scarey.

Marytwicesurvivor

Survivied CML 6/93 with a Bone Marrow Transplant
diagnosed invasive SSC of right aveolar ridge 12/09
Right posterior maxillary paletectomy with obturator placed 1/21/09
Temporary Obturator 1/28/10
Home 1/31/2010

Myles Magic Mouthwash is a prescription swish and spit that numbs your mouth for around 20 minutes or so. I have used it the last 2 years due to problems in my mouth.

Mary,

Sory you had to join us but you are in the right place. You might want to start your own thread. Since you are in treatment now you can go to that forum and start a new thread.

I'm in Michigan also and had my treatment to the soft palet. no surgery, just rad.

If you have any questions feel free and fire away. We are here for you.

Kelly

Magic Mouth Wash

1/3 each Maalox, Benadryl Elixir and 2%�Viscous lidocaine
1 pint. �
2tbs q4h, swish and spit

Susan,

You will need this called into a pharmacy by a dentist or physician.

Almost every day I say to my wife that it boggles my mind how anything we want to know is right at our fingertips with the internet. How did we ever find the answers to our questions before?

Unfortunately, there is a lot of misinformation out there. For anything important, don't use Wikipedia as the content can be changed by anyone.

Although it's been said before, this site has the best and most accurate information about oral cancer. One might think that coming here as a dentist, I knew everything about oral cancer. My education in this area really began in earnest the day I joined the OCF.

What Brian has accomplished here is an absolute godsend for thousands upon thousands of people. I for one, feel that I have become a much better person since I joined the OCF family almost 5 years ago. I had it easy with my treatment because I had some background to know that something was wrong with my tongue. (read my signature) The real heroes here are the rest of you, the survivors and the caregivers that give of themselves every single day. We have lost many dear friends since I've been here, to this a terrible disease. However, I truly believe, that the advice and encouragement given with love (sometimes tough love) here, has helped to save more lives than I can count.

So I'll get off my soap box now and try to get some sleep soon. That is after I see how many more feet of snow we're going to get on Wednesday. Susan, I'm afraid that New York City is not going to get away with it this time. When I asked for snow so I could have a banner skiing season this year, I didn't ask for this much.

[quote]Are we allowed to ask about specific recommendations or does the board prefer to stay away from that kind of stuff. Just wondering how people felt about Sloan in general that have used them.[/quote]
The preference is not to discuss specific doctors by name on the boards. But posters with knowledge of doctors to either (a) seek out or (b) avoid can send you a private message or e-mail to identify them. And certainly there is open discussion about places where posters have been treated.

Hi Mary, wanted to say that I have found this place is so helpful and I'm sure you will as well.

I'm hoping someone can help us figure out our next step now. We are still waiting for the biopsy and MRI report. From being on here even though he was told it is 100 percent cancer I know to wait to find out results and get info. But we absolutely know we don't want that MD to be involved(no matter what it is). Even if he is right(and I hope not) we don't like his presentation.
So, we are persuing the Sloan route. We are recommended to several people there from MDs we trust.
The one we are leaning towards works there as well as one of their off site places. Reading his stuff he says all the right things and he has a good reputation. However, he is a surgeon and someone suggested that might imply a bias to cut. However, that is not what his profile says. It suggests an understanding of a team approach. Thoughts?

Also, if anyone did use Sloan and wouldn't mind sending me a PM about any experiences or Drs that would be great.

And Jerry, once again---THANKS.

At any CCC, like Sloan, you will get a team approach and you should have no fear that a surgeon will be "cut happy". I was treated at Fox Chase in Phila. and although my treatment ended up to be surgery only, I did consult with an RO at the surgeon's insistence, who was in complete agreement that surgery was the best course of treatment for me.

Jerry. my Oncologist has his own formula for Magic Mouth Wash, Even the pharmacist had to call to see how to make it. It contains 3 narcotics and it sure numbs you mouth for awhile. I asked the pharmicist what was in it but he wouldn't tell me. LOL And we are buddies.

Thanks. I think we will go forward with this guy then. I really liked what he had to say in his statement. The ENT still hasn't called us back so we asked our family MD how long it might be before the biopsy results returned. He told us it could be 7-10 days. Really??? Is that true?
I was tensing every time the phone rang and it's only been 2 business days.
Given that is it premature for Dave to do a PET? I honestly don't think the ENT realizes he went for his MRI already and has the PET scheduled for Friday. He told us it might take quite awhile before the tests could be scheduled.
Arghhh. Not having anyone manage this is frustrating.
Whatever this thing is(still don't know how to describe it---gash, wound) is starting to heal since Dave stopped smoking.
Do these things come and go? Is that why it's often easy to miss?
We asked for the mouthwash but he wasn't familiar with it. He's going to look into it though.

yes, the wait on the biopsy takes FOREVER. 7 days sounds right.

There is no standard time frame for biopsies. It really depends on how busy the pathologist is. Mine was done on a Friday and I had the faxed results in my office by 6 PM on Tuesday. We use Temple U. in Phila. and they are always fast and good.

The waiting is awful.

My ENT, AKA Dr Death, told me he would pull some strings and put a rush on it. Two weeks and 1 day later after several of my calls to not only his office but the path's office I finally got my bad news. Yes the waiting, whether it be on the biopsy, Dr's visits or test results are part of the Tx that gives us mental issues.

David, I'm actually afraid if we asked this guy to put a rush on the report we would get one of two responses"I'm sorry, who are you again?" or what happened with you. He'd put a "rush" on and we'd hear in three weeks.
Jerry, I've heard really good stuff about Temple. We are lucky we live near such good places.
What's puzzling me(well, about three thousand things) but is the whole dx on sight thing.
I hear loud and clear what everyone is saying about wait for the biopsy(or I guess the MRI since it seems we might get that back first).

But the thing about recognizing CA on sight is confusing. He looked at it and pronounced it CA with "100 percent certainty." But it looks different today than when he went in.I'm guessing the stopping smoking is helping it slowly heal. So, if it changes visually wouldn't that make for a lot of wrong or missed diagnosis???

I suppose (and it is supposition) that the wound would heal but the tumor, if there is one, remain unchanged. I'm really glad to hear he has quit smoking and hope he stays tobacco free for good.

That makes sense. Like I said I haven't seen anything like what he has in pictures or by description. But I also don't know what might be behind the gash.
I'm accepting we had a crappy Dr, a lot of unanswered questions and we have to wait for the biopsy!!!
I'm very proud of my guy. In the middle of this anxiety, he just quit and today is a week. It's not easy but he did it. And he's eating a lot more which also can't be easy with the discomfort from the biopsy(Dr. Doom and Gloom did not return calls so we didn't get magic mouthwash yet). Gained two pounds!!!