I am new here as I just recieved the diagnosis of Intermediate Grade Mucoepidermoid Carcinoma less than 24 hours ago. I am 55 woman a non smoker and stunned. I had a small white lump on bottom lip which was removed. The oral surgeon called to tell me it was cancer a few weeks ago and scheduled a second surgery to remove further tissue. He was very casual about this until I went in last Thursday when he informed me this is beyond his ability. He had no answer as to why he waited until I was in the chair to tell me this.
I have been referred to a local doctor and I am told I will be put in with all his other new patients and taken as he feels
necessary. I have been told it may be weeks before I can see him for even a consult. Ok maybe I am overreacting but I am thinking if I wait weeks to see him and weeks to schedule surgery that might not be the best idea. I am sorry if there are others out there that need surgery as well but I am concerned that just waiting may not be the best idea. I have no idea how to find another doctor, how many opinions to get or even where to start. I know take a deep breath but once that is done where do I even start. I have read everything I can find in the last 24 hours. Never sure if that is good but
the information has been generally consistent.

Debbie
Just Beginning

Debbie:
You should not have to be put through the torture of "waiting" for something this important and scary to you although it will turn out fine, I'm sure. I would call EVERY dental surgeon in the area until I found one who would take me ASAP. Perhaps call a local hospital and ask them for a referral. Good luck.
julieann

Debbie,

If the diagnosis is cancer you should be going the the nearest Comprehensive Cancer Center CCC you can find. There is a gentleman on this board ( DavidCPA) that is in Florida and was treated at Moffitt Cancer Center in Tampa and cannot say enough positive things about it.

Many of us travel fairly long distances to get to these centers because they are the best shot we have of beating this thing coming out of the gate.

If I where you I would call Moffitt today. If they are to far from you they will give you the best option close to you that you can get. You need to get very aggresive with this beast which I think you are doing now.

Good luck and let us know how things are progressing.

Kelly

That is good advice Kelly just gave you. Get on the tele[hone or the internet and you will find what you need. A CCC or and a good onclogist. I traveled 3 states for treatments. I found most on the internet including the Ohio State Unisversity CCC and the name of the Oncologist that operated on me there. I called his office and was surprised because I had an appt. with in 3 days with him and about 2 to 3 days later was in the OR. This is too much to wait and worry about.

I did not wait for a referal. My wife got on the phone and set me up with the oncology department at a nearby hospital. (I was on the road working) I was very ticked off at my GP for not calling back within hours. Call a cancer center as soon as you can.

Thanks for all the input, in 2 hours I have gone from feeling lost to at least moving foward. The Doctors office did just call and they want me in there Friday. That's the good news the bad news is that it would probably be several weeks unless he feels I needed to be seen sooner.

Debbie,

I'm going to be quite frank with you, as is my way and I hope I don't offend. You have CANCER, the type of CANCER you have gives you a 5 year survivability rate of between 62-90%...where that is much higher then what I was given you may just be in the percentage that doesn't make it.

So now that you have the numbers and hopefully a sense of severity of your situation do you really want to "F" around with a second rate Dr that may not see this everday and is certainly not looking at this with the same urgency or degree of seriousness that you are? I would hope not.

The advice given to me and that I pass on to others is this...the only things YOU can control now are 1: Your choice in you medical team; 2) your attitude and 3) your nutrition.

Choose the absolute most qualified medical professionals you can find to give you the absolute best chances of making it through this ordeal. A Cancer Care Center is usually the best place to start...forget your lackadaisical local Dr Chump who may just as well be blowing you off and get a real expert. Don't be stupid about this thing.

Keep on these boards for support and advice, the people here have walked down the path you have been placed on...it's not an easy road but it is not impossible to navigate.

Good luck

Eric

Eric I appreciate your comments and yes I know I have cancer. I also know the statistics and I know that statisitics don't apply to a case of one.

The local dentist did not handle this correctly but that is finished and I am on to the next step. My confusion comes from,
since cancer of this type is fairly rare I don't have anyone to ask for referrals. I don't know if I should see another oral surgeon, an oncologist, a plastic surgeon, a witch doctor or maybe all of them.

Just because the person I was referred to is local that doesn't make him the wrong choice or less of an option. Orlando, Fl isn't in the country so we have some good doctors here.

How do you search for a doctor to be that specific? Since I literally talk for a living this is a critical issue for me. While I don't want to be disfigured that isn't the biggest issue for me but retaining the ability to speak is VERY important.

The local doctor I have been referred to is with MD Anderson here in Orlando. I have been told that he is literally the best here and picks and choses who he will see. I have researched his track record for claims or discipline here in Florida and at least that is all clear.

I also don't think I am being too causal since this time yesterday when I got the diagnois I have learned enough to give a lecture to someone who has never heard of this cancer. I know that it is probably at late stage 2 or even early stage 3. I don't think I will know which until further surgery. I have found this group, I have at least one appt on Friday

How do I find my perfect team??

Debbie,

Looks like you are very well situated. M.D. Anderson is very very good at this and Moffitt is close to you in Tampa should you decide to get a second opinion.

Anderson or Moffitt should set you up with a team. This could include a Dentist, a Medical Oncologist, a Radiation Oncologist, a Nutritionist, and an ENT.

It will all depend on the course of treatment that they recomend, but it looks like you are in good hands.

Kelly