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.