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