Here's where I am:

45 y/o in otherwise good health. Just Dx'ed with SCC (Floor of mouth). Probable T3 N0-1 M0 based o9n what we know so far.

Met with the docs at MD Anderson Orlando. All agree that surgery&rad/chemo are the way to go.

Had a nice visit about the likely side effects. Bottom line is that I think the likely side effects of surgery (especially speech & swallowing) are unacceptable.

Therefore, my questions are as follows:

1. Is anyone familiar with a CCC that would be inclined towards a non-surgical approach?
2. Is there any benefit to a less aggressive surgery or a pre-surgery radiation treatment?
3. I know there are some clinical trials in this area, any advice on being accepted?
4. What will happen if I do nothing?

Thanks in advance for your time. I appreciate any & all input. This is a big decision (duh!).

Clint

I strongly advise anyone who has been diagnosed with a serious illness to get a second opinion, if only to add a different perspective -- some insurance carriers even require them for illnesses which incur major treatment expenses.

MDAnderson (Houston) is one of the top CCCs in the country, others in the east include Sloan-Kettering in NYC and Johns Hopkins in Baltimore, the OCF web site has a link to the list of the NCI-CCCs throughout the USA. Usually it is not hard to get an appointment, they take cancer seriously, we got our Hopkins appointment for three days after Barry's dx and Sloan a week after that.

I cannot speak to either institutions' approach to treatment of floor-of-mouth SCC, but both handle many oral cancer patients and have top oncologists and surgeons. I am sure others on this list can suggest other options, but in any case, plan on getting a second opinion.

Gail

Clint- you have the same diagnosis my husband had-You ABSOLUTELY can NOT "do nothing"! [if you choose that route- get your final wishes in order]
2nd opinions from the most qualified Head and Neck Cancer Centers is good. Then listen carefully to what they tell you. Many of the side effects of tx. are quite manageable. Best Luck to you. Amy

Without knowing every detail of your situation it is not prudent for any of us to suggest which option is appropriate for you.

Having said that, #3 and #4 shouldn't even be on your list. You have a level of disease that responds well to conventional treatments, so clinical trials are not for you when you have good odds taking the path that so many have taken before you. Doing nothing means you wil not survive this, and death by oral cancer is not an attractive means of leaving this world, even if that is your desire by choosing to just let things run their course.

I had a more advanced disease than you, and my MDACC docs (Houston) opted to hit it with radiation first to do as much as possible. When that was completed after 7 weeks, the intra-oral disease had been completly eliminated and I only had some small remaining neck node involvement that fell into the hands of the surgeon. I like this approach as it has fewer QOL issues in many locations, such as base of tongue cancers. Don't waste a lot of time getting to a decision via that second opinion. This can move very quickly in some cases and you want to deal with this as early as humanly possible.

Clint,

If you DO get a seond opinion and they recommend surgery as well, I'm here to tell you that I understand your quality of lifem concerns. BUT, as an ENT I went to when I realized my dysphagia might not go away said to me"there's nothing that interferes with quality of life quite like death"

Also, when I had my partial glossectomy my ENT gave me dire warnings about what this could do to my speech and my speech is fine. I do have swallowing problems but they are more from the effects of radiation than the effects of my surgery. They have to warn you about the worst things but they don't always happen.

I think you mentioned you are a psychologist, right? I'm sure thinking about losing your ability to speak clearly includes thinking about losing your ability to do your job--it did for me too (I was trained as an experimental pscyhologist and teach psychology).

But I don't know if you keep up with all the research on life satisfaction and affective forecasting -- it turns out that we're pretty bad at predicting future happiness under these conditions. Everyone thinks they'd be miserable with a disability they don't have now and most people (MOST) go back to their normal level of life satisfaction fairly rapidly.

My inability to swallow does affect my life satisfaction soemtimes--when people are talking about a great new restaurant or my husband makes my favorite kind of pizza. But you'd be amazed how seldom these moments are and how much else there is in the world to make me happy.

Just a little perspective for you....

Nelie

Hi All,

First, let me say that I really appreciate the responses. It's very helpful to hear multiple viewpoints.

I need to get my CT Scans re-done (later today) so that the docs can better see whether the carotid is enrobed. So I actually have some time to do this kind of "what if" thinking.

It is correct that the loss of speech and eating that might result from a surgery is the issue. Honestly, I'm not sure that a long life without those abilities would be as rewarding as a shorter life with them.

I'm also surprised at how resistant my docs were to even discussing non-surgical options. In my case, I'd probably trade a few percentage points of survival probability for the ability to speak clearly (because of my profession and silly little psychological issues).

I guess I'm intrigued by the notion of trials because they have the chance of combining traditional radiotherapy with potentially useful meds. I guess I don't see the downside.

Anyway, all input VERY MUCH appreciated.

Clint

"Honestly, I'm not sure that a long life without those abilities would be as rewarding as a shorter life with them."

There's a big error in this reasoning--which is that if this cancer takes your life your "shorter" life until you died wouldn't be affected by loss of speech and swallowing. That's exactly what the cancer itself can do to you, as well as other nasty stuff, before it eventually kills you.

Believe me, I understand from personal experience,that death from oral cancer versus surviving perhaps with a disability feels like an "unacceptable" choice. But it's what you're facing. Thos of us who have been on this board for any time know people who have died or are dying of this. I think we'd mostly agree it is not a better alternative than surviving with a disability by any stretch of the imagination.

Nelie

I have to agree with Nelie and Brian and I will have to write that quotation for future reference ("there's nothing that interferes with quality of life quite like death")! Others have said "it's better to be standing on the grass than looking up at the roots". Honestly Clint we know how you feel. All of the psychology training in the world can not prepare you for this. It totally yanks the rug right out from under you. I passed out in the exam chair when they told me. It's perfectly ok to be stunned, dazed and confused (and possibly even angry, in denial or bargaining) for a few days but then you have to get with the program because hard decisions must be made quickly. Surely you must recognize the formation of the 5 stages of grief here - like grieving your former cancer free life of several weeks ago. This will all pass by quicker when you get to the "acceptance" stage.

Your actual degree of disability may not fit the worst case scenario or maybe not even be close to it. Try to stay in the "now", because future tripping on what may or may not happen will certainly drive youy crazy. The doctors lawyers instruct them to always give the worst case so you won't go back and sue them. Many here have had your procedures and are living normal, productive and rewarding lives today (key word here - "living").

Clint,

I want to re-emphasize a key point that Nelie and Gary made -- the doctors have to tell you the possible "worst case" result, which can be horribly depressing when you're still coming to grips with a diagnosis that probably hit you out of nowhere. I remember hearing my doctors recite the litany of potential long-term disabilities I might suffer -- severe speech impediment, total loss of feeling and motion from my neck down through my left arm, eating difficulties, etc. The actual result for me has turned out to be so minor in comparison with that list that I've wondered with hindsight how I could have been so worried about the treatment program. Thankfully I've ended up with minimal impact on my speaking and eating, and my overall "quality of life" in the 17 years since cancer has actually been better in many respects than it was before.

Please focus your energy right now on getting the advice of experienced H&N professionals and following their recommendations about fighting this disease aggressively.

Cathy

Welcome to the forum Clint,

I don't have oral cancer, but my Aunt does and she's been battling this damned disease in her mind as well as her body for almost 3 1/2 yrs. When my Aunt was first diagnosed, she asked pretty much the same questions as you have- except for the clinical trials questions. Mainly her issues were quality of life issues. For as much as I explained -in detail- what was going on in her body, amazingly she still asked her doctor "what happens if I do nothing?" and for a short time, I REALLY thought she was going to do nothing. The long and the short of her story was that she thought she could tell the doctors what they "could do" and what they "absolutely couldn't do". That is, she made a deal with them. Her deal was surgery alone. That was all she would/could tolerate. No radiation because of quality of life issues. She didn't want dry mouth for the rest of her life, or to loose teeth or to suffer skin burns and mouth sores. Quality of life.......... Some deal. Stupid doctors. And so my Aunt had a partial glossectomy, the floor of her mouth was reconstructed, a saliva gland was removed as well as only one lymph node from her neck that was "only cancerous on the shell of it but not inside". They considered this fortunate. She thought she was safe. Let me say that after ALL that surgery, 19 hrs. worth, I had a message on my answering machine a week later in a raspy voice, "hey my little tomata', it's me, I'm OK". And after that, when she got home, we started talking a blue streak on the phone again every couple of days just like we always did. OK, let's bring this to the present..... As of 7/27, my Aunt's cancer is back. As of 8/18, it has spread to her right lung as well as to the lymph nodes in her chest as well as other places in her oral cavity. My Aunt is dying. And as much as she's heard the word "untreatable" and "terminal" from her doctors recently, she's still asking the dumb questions "isn't there a wholistic cure for this?", "what if I do nothing?" We're replaying all of the events and conversations from three yrs. ago. I love my Aunt dearly, more than I can explain. She's one of my best friends. But she's dumb. She made a HUGE mistake. And she still doesn't get it now.

Please keep talking to all the good people here, they may not have medical degrees but they are experts. Ask the smart questions, not the dumb ones. There IS NO QUALITY OF LIFE ON THE OTHER SIDE OF THE GRASS! as Brian says. A great surgeon "can" reconstruct the entire inside of your mouth and you will still be eating, talking and swallowing very close to normally IF you don't wait too long to mull all this over. Be smart, take it all in, consider it all VERY carefully, find the best, feeling informed- ACT QUICKLY.

Am I angry? Yeah........ I'm going to lose one of my closest dearest friends and my heart is breaking. Please don't do that to anyone you love or loves you. This thing is a beast. A runaway train. It can't be stopped if you do nothing or if you make half hearted deals. You got to go full out, roll out the cannons. You're going to war. This is a war that will be hard to win long term but YOU CAN do it. Be one of the great people on this board who kicks this thing in the butt!!!

I'll be praying for you.

Hi All,

Thanks again. I'm sure you don't have to be reminded, but it is INCREDIBLY useful to read all of this.

Obviously, doing nothing is kind of a longshot. I'm not so sure about doing the radiation first, though (instead of surgery). Does anyone have any thoughts on the relative risk of the non-surgical approach?

Clint

I think the "non surgical approach" is only something you should consider if you get an expert second opinion (from a CCC) that says it's an option. if no one who has expertise in treatment (we don't) says to you this is a viable option, assume that it isn't and that no surgery would be as risky as Lisa's Aunt choosing no radiation.

nelie

Clint, I read that your are an educated man, so I hope you will be able to incorporate these words and the intent behind them. "Doing nothing" NOT a long shot, unless you are in line for a miracle. "Doing nothing" is committing suicide, but it won't be short and sweet. [maybe short- but certainly not sweet] It's good to ask tons of questions of the Docs, but trying to second guess them is a mistake. You need to move into the "I'm gonna fight this and win" mode and quickly. Amy

You will not qualify for any trials at this point. This is not in your control, and if you like you can use the trial search engine link on the resources page of the main web site and look. The protocols for trials are very specific and these being something that I monitor very frequently, at least weekly, from what I have seen, they do not recruit people who have not used conventional proven methods yet for the most part.

And if your perception of the reason to get into a trial is that you will get radiation and a chemo drug.... That is the standard of care today as a first response to this diseaase when it is more than a very small carcinoma in-situ. That is why everyone is pushing you to NOW get a second opinion from another source than these docs who are apparently pushing you towards surgery.

Dear Clint,
I am new to this forum. My husband had surgery and is now receiving radiation and chemo. He had a tumor on the base of his tongue. Shortly after his diagnosis,a close friend gave him a letter written by his brother who had recently passed from oral cancer. He waited 18 months, from the onset of a sore throat, to seek treatment. He is very graphic when he explains how his "sore throat" had eaten into his tongue and the pain he was in. When he finally sought treatment it was with Dr. RW at MD Anderson Cancer Center.
His sugery consisted of the following:full tongue removal,a jaw bone replaced with a leg bone, a new floor for his mouth was built. After the surgery,radiation and chemo. He passed 6 months later.
My husband had spent some time with his friend at his brothers home, both before and after his death, four months prior to his own diagnoses. He saw first hand how destructive his cancer could become and read how quickly it could spread and how painful that could be. He went for the surgery 4 days after the biopsy because he could not really pinpoint when his symptoms had began.
From the information I have been reading I understand everyone is different, but after having insight to anothers choice to try for Quality, I am glad my husband chose to try for quantity.
Good Luck

Clint, I had a stage IV tumor with mets to lymph nodes. I went in BEGGING for the docs to hit it hard with everything they had. They did, and here I am nearly 5 years later, happy, healthy, and very glad I didn't dither about future, unknown, quality of life issues. I had surgery, rad, and chemo. Without all that, I most likely would have no life of any quality.

It is absolutely rotten that you have to deal with this, but deal with it you must. MD Anderson docs are good ones. Suck it up and put yourself in their hands. I prepared for the most horrible experience I could imagine and it never got even close to that. Bottom line: do you want to be here in a few years? If so, get treatment and do it soon!

Note: I sound a little tough because I have lost friends who thought they didn't need the full treatment. I don't want to see one more person make that STUPID mistake. Some forms of cancer can be taken more casually. This is definitey not one of them, so get going!

Hi y'all,

Thanks again for all of the input.

I got the new CT Scan on Friday. My surgeon left a message yesterday saying that I need to repeat the biopsy, 'cuz they don't think it is emerging from the Floor of Mouth anymore. No idea what this means, guess I'll find out...

Clint

Am I hearing you right? You have a T3 malignancy, and the doctors are going to make you wait to get a few minute long biopsy? And you are comfortable with this? If that is their call and they still don't know what is going on, you need to get that biopsy Monday, and then get on the phone yourself to get a second opinion immediately. Time is moving, the disease is still unchecked, and it appears you are still near square one. You have to learn to be a stronger advocate for what you need when you need it. Is their schedule or inability to come to a difinitive staging and treatment protocol more important than your life? I'm sorry to be so blunt, but how can you maintain confidence in these guys, not yet seek out a second opinion, and let the clock and the disease keep on ticking? Time is not on your side. Get answers on Monday. Get an appointment for a second opinion ASAP.

By reading your posts, you strike me as perhaps unconcerned and somewhat not serious about the gravity of the situation at hand. We were told by one of our doctors that cancer cells double in number with every passing day. Your T3 tumor is gowing daily but I do not feel a sense of urgency on your part to attack it ASAP and head on.

Like others have said, doing nothing is an option because "death" is not much of an option. Press you doctors for the FNA and get more opionions ASAP.

Hi y'all,

Thanks for the input. Here's the latest...

I finally got the new CT & MRI. There's a huge conflict with the new CT saying that it is smaller and less spread out than originally thought, while the MRI shows it being more extensive.

I had an ultrasound-guided Core Biopsy yesterday. On ultrasound, it didn't look that big.

I should get the biopsy results Tuesday. I have my second opinion team lined up and waiting for data.

Any advice, reactions, etc.?

Clint

Clint, When you go for the meeting with the team giving a second opinion, see if you can bring a tape recorder as you will likely be getting a lot of info. very quickly and will want to review what was said more than once. Also, it's a good idea to bring a friend or someone who can help be an extra pair of ears. Also, I would write down a list of questions you have first to make sure you have them all answered.

Good luck with it all. I know for me,one of the most stressful times in this whole process was when I went for my second opinion and was getting disagreeing recommendations about treatment from pople locally. There was just so much to process quickly and over what was a really critical decision! Please come back and let us know what you hear from th biopsy results and the second opinion.

Nelie

Well, I got the biopsy results. The bottom line is that there were "some cells suggestive of a neoplasm," but nothing conclusive.

Now they want to do a real surgical biopsy. Any opinions?

Clint

If it were me, I'd do it so I could sleep at night. Amy

Been there, done that, it was SCC. Why wait? Results same day. Beats worrying. Once you know what you are dealing with, it is a lot easier to make decisons.

Take care,
Eileen

Clint, you can't possibly be hoping anyone on here will give the opinion for you to just move on and not check this out. You obviously need a surgical biopsy. Schedule it, get it done so you know what you're dealing with. Dragging this out and avoiding possibly hearing what you DON'T want to hear isn't the right way to go. You'll feel better once you KNOW.

Yup. You need a surgical biopsy and to get answers as soon as possible.

It's scheduled for Monday. Y'all please keep your fingers crossed.

Clint

Clint-fingers and toes both-as my 29 mo old granddaughter says. Amy

Yup, I'll cross whatever appendages I can too

Nelie

Clint,

You have the number, call if you need to talk. If you don't have it, PM me. I will be in the office tomorrow.

Thinking of you!
Lisa

T4N1MO
I am about to have the same surgery.
What was your rehab like and how much time before you do everyday chores?
Anyone who has had this surgery is welcome to respond.
Belmond

T4N1MO

I am facing the surgery of having my lower jaw replaced.

What is the surgery like and what is the rehab like.
How much time before you are operating as normal?

Belmond

This is my first experience with a message board. How helpful it has been for me. My 33 year old daughter was diagnosed with oral cancer one year ago and chose to go the "natural" route. Her suffering has been unbearable and she finally consented to go to the Mayo clinic in AZ as I write. Today they reccommended what MD Anderson did, only now it is removing the jaw and replacing it with a leg bone. They will also remove the tongue. They spent well over $50.000 in Mex. and on other treatments stateside. They have no ins., have sold their home and have very little left. She was saving enough to be buried. How much better to have had that little sore removed a year ago. I wonder if my two little grand sons will have a mommy long. They probably won't even remember her. Thanks again for your web site. I pray they will visit it also. Yes, we still are praying for a miracle!

Dear Coverup -
It must have been very difficult for you to write this, but we are grateful for your input in the forum. We are convinced that mainstream medicine is a person's best chance for survival from this insidious disease. Your daughter was so young to get oral cancer, and I too pray for that "miracle" that brings her through this. I am sorry they lost so much in their effort to combat the cancer. Thank you again for sharing this story with us and please keep adding your comments and updates to the forum. Hugs to you and your daughter and family....you are in great hands (Mayo) now, so with all the medical advances in treatment for this surgery, you can look at recovery with reasonably high hopes. JaneP

Dear Coverup, Oh my, I am so sorry to read your post, I will keep you and your daughter and her family in my prayers, hoping things work out. Love, Carol

Dear Coverup, I,also, am very distressed to read your post. I am sending hopeful thoughts to your daughter and family. But my PLEA to you is that you get on as many websites as possible and TALK about the dangers of not getting Real Medical[ie bonified trained Physicians] to diagnose and treat this cancer-or any cancer.You could make something good come out of this horrendous experience. Amy

Finally got the biopsy. Bottom line is that it is Base-of-toungue SCC. T3N2CM0.

The tumor is very pooly differentiated. On the MRI, it looks like egg-drop soup with little strands and islands combined with bigger hunks.

Surgery is out of the question (so much for the thread title). So is IMRT. So, tonight, I start cisplatin and Monday I'll start with full-face radiation. I'll post my experiences in the treatment topic.

Before I end, let me thank Brian for this service and everyone who has posted. There is no doubt that I was better prepared than I ever would have been and I am entering treatment feeling informed and as if I made good decisions. I hope to repay the favor many times in the future.

Clint

Clint,

I'm glad you finally got some certainty about the course of treatment. We'll be pulling for you as you go through this.

Cathy

Dear Clint,

I'm glad that you got the biopsy even though I wish all of us had gotten different results. At least you know where you stand. You have the same staging as my husband, his primary was tonsil but it had spread to the base of tongue, the soft palate, and 7 lymph nodes. His PEG tube was removed last month and he's starting to feel a whole lot better.

Good luck with the treatments. Jack had 4 cycles of cisplatin and 30 radiation treatments. To prevent nausea he took zofran with compazine for breakthrough, and emend of the days he had the actual chemo. He felt that taking it all the time whether he felt nauseaous or not made a difference. He actually didn't throw up until the last cycle -and he was taking amifostine shots as well so it worked for him.

Are they doing the cisplatin in 2 day doses every 21 days? Make sure that you stay hydrated - like 3 quarts a day - because that will decrease the side effects. Jack also had additional IV hydration on the evenings that he had the chemo. What did you decide to do about the PEG tube? If you didn't get one, just be real careful about the hydration and nutrition. Even if you have one, keep swallowing during the entire course of treatments, it will help you recover later on and prevent trismus.

If you notice any hearing loss let them know, Jack has a moderate high frequency loss that may be from either the cisplatin or the radiation but he still feels it was worth it. He told me to tell you he would do it again and to be strong, this too shall pass and you get through it.

Please let us know how you are doing. Feeling prepared was a large part of comfort level for us, I think it makes things bearable. Try not to second guess your decisions, it sounds like you are making good ones. All our best wishes go with you during your treatments. You're not alone.

Regards JoAnne