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

Debbie,

You are right...statistics don't apply to a case of one, for the good and the bad. There have been examples of stage 1 SCC (90% 5year)patients here that have died a year after being diagnosed.

"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."

This is the information you provided dear...to me if I was told this I would immediately look for care elsewhere. MD Anderson is a wonderful program, the Houston facility is well regarded and top rated. You can wait around and see if you are one of the "special" few this obviously overworked Dr picks to work with and see how that works out for you.

I didn't say you were being casual...but the information you gave showed examples of your medical professional being that way and the MD Anderson response is at best dissappointing. I doubt you would get the same response from a Cancer Care Center or from the sounds of things Moffit.

I also depended on my looks and speaking abilities for my profession and even being treated at one of the top programs in the US for cancer (6th) and otolaryngology (12th) I ended up disfigured and severely affected speech, unable to return to my work. My point was Debbie, you want a team as passionate about YOUR cancer as you are and your initial information painted a different picture.

Debbie,

Sorry for the news. This may help you:

www.oralcancerfoundation.org/facts/rare/mc/index.htm

Either MDA or Moffitt would be a good choice so lets see what MDA says.

Good luck.

seda bug,
search mucoepidermoid in the search box. it will take u to older post of others with this cancer.
finding the right team can be aggravating...but u will KNOW the right team when u find them.
good luck in ur search and keep us posted.

I thank all of you for your assistance. Thanks to this board I have spoken with one Doctor from Knoxville and I have an appointment in the AM with local Doctor.
I had a suprising moment the other night when after spending HOURS reserching this and reading your posts and searching your site I came across the page showing the size of a cm it took me a couple of minutes to understand that 4 cm is larger than 4 mm.
I am not entirely stupid I just didn't grow up with metric I don't think in metric and there is only one little letter change didn't seem that big a difference.
The good news is that mine was only 4 mm Not 4 cm which means a different route for me. I will know tomorrow but the one conversation I had with the specialists was that this is very early to find it.
No EricS I won't let down my guard.
I want to thank you for being so blunt the other day I know I was defensive and confused. I have been on so many roller coasters since Monday I can't ever remember quite so many highs and lows in such a short time. But the list helped me there because I read that is normal.
So I will update and ask for advice after the meeting tomorrow.
Thanks again!

Debbie,

No worries, I'm an acquired taste really which is why I generally apologize before I post. My heart is usually in the right place however at heart I'm a jerk with too much attitude and it oozes into everyhing I seem to write.

I try and steer clear of new posters and the caregiver forums as I feel I don't relate well in those areas...I know the last thing you need is to feel attacked on a "support" forum.

Good luck Debbie, I hope all goes well.

Eric

Debbie,
I would agree with Kelly. You are quite fortunate to have a MDA Cancer Center in Orlando (affiliate of the renown UT MDA Houston CCC) and Moffit in Tampa.

I have seen some of the TomoTherapy presentations from the Orlando MDA and their work with Tomo in Head & Neck cancer has been pioneering. MDA's Tomo protocols seems to set a benchmark for many other Tomo centers (but I don't know is Tomo will be their recommended approach for Mucoepidermoid Carcinoma).

With a second opinion from Moffit you should be in good hands.

Debbie, so sorry about the news. You will be in my prayers.

Debbie, 1 question. Do you have someone to accompany you to your appointments? It's a very good thing to have someone to take notes and ask questions you may not think of. A lot of info is going to be coming at you and you may feel overwhelmed by it all. I hope you have people to support you through this.

If you have a recorder , take it in with you and record what is said. Good luck with your visit .

Hi Debbie, Sorry to have you as a new member here. You have already found out for yourself how helpful & wonderful a site this is, so you are already making smart choices in your care! It stinks going to the doctor on a Friday...makes for a very long weekend! Don't worry, great care is on its way & I'm sure your going to be just fine.

I had my first visit Friday I was actually his only patient. I asked about the response from his staff that it could be weeks or months before I would get in, he indicated that he can't take everyone and IF there is not already a diagnois for cancer it does take months. He said he had promised my Oral Surgeon he would see me last week. I just missed that in the conversation somewhere. I did really like him, I didn't take anyone with me but I went with pages of questions which he patiently answered.
I am scheduled for a PET Scan Friday and a mtg with the Speach Therapist. He also is getting the original sides to confirm that it is intermendiate grade.
He did indicate that I will have further inpatient surgery with a skin graft.
I don't understand the following first, why will I be in the hosital for several days? Second why will I be out of work for longer than a week. The area he intends to remove is about 2 inches on the left lower lip w a skin graft from Thigh.
I know for many of you these are no brainers but even with research I don't quite understand.

I be taking my husband and maybe a close first next Tues for results.

Debbie,


I still think he and his staff needs sensativity training, there are better ways to get things across...especially if you've already identified yourself as a cancer patient. I've had to deal with idiots like those over the last two years and I have no patience for them.

The proper response after being identified as someone with cancer referred by an Oral Surgeon would be that they would make sure the Dr got your file ASAP and then get back to you as soon as the Dr had a chance to review it. For the patients peace of mind the person answering the phone should relay that they'll do everything they can to make sure the Dr get's your info...after that it's on the Dr. But leaving a newly diagnosed cancer patient to believe it will take weeks or months to even get a consult is akin to psychological torture and is just horrible business practice to boot.

Tangent aside, before getting a PET/CT scan and reviewing the original sides, the Dr really doesn't know how involved your next surgery is going to be...so I'm thinking the recovery time is an estimate. I just had a skin graft on the inside of my mouth with donor tissue from the hip/groin area. Your mouth is going to be stitched/sutured and likely gauzed up for several weeks. My skin graft was done over a month ago and not all of the stitches have dissolved yet. But these are also questions you'll want to address.

Great job of bringing in questions, bringing someone else with you is always helpful as they'll think of questions you might not...and it's good to have that support. Dr's are notorious for not giving out information..you have to pry it out of them, I've often thought about subjecting them to waterboarding myself.

Good to hear that you like this guy and that things seem to be going good. Don't hesitate to ask any questions on here..that's what we are here for.

Good luck,

Eric

I was just thinking about my upcoming PET scan. I realized a couple of days ago that my Mini Schnauzer Largo has spent the last few months taking every opportunity to sniff the spot on my lip where the cancer was. Since it was removed about a month ago he no longer pays any attention to that area or any part of me. So I am thinking I have already had a clear "PET" scan.

Animals have been able to sniff out cancers before, I pray that your dog is right on the ball for you.. Good luck and the best to you.

Seda,

Original and cute!!

Seda,

First of all, I love mini schnauzers and have had 2 myself.

Second, love the joke.

Jerry -
You can keep your doggy pet scans ...
I prefer cat scans, myself.

Marlene

Love dogs, not too crazy about most cats.

The last 2 weeks have truly been the worst weeks I can ever remember. I found that being diganoised with Oral Cancer is a very lonely place to be. Not to fault my family and friends who could not have been better to me, well most of them.
I will be letting the ones who weren't know how badly they can hurt with just a few words. But I am not sure how I would have made it to this point, without this group and those of you who answer the same questions from us neebies time and again with patient understanding, you are wonderful people and I thank you from the very Bottom of my heart!!!!! AND I include those of you who kicked me in the back side to take action as well.
I had my Pet Scans and LARGO WAS RIGHT!!!!!
Not only is there no further spread of the cancer BUT there is minimal left behind and I am now so HAPPY TO ONLY, who ever thought that would be good news, be facing One more surgery!!!! Which may not even require a skin graft!!!!!!! I will of course be followed for years but that is ok
I am not leaving but I had to share this with you guys first.

That's great news!!

fantastic!

Wonderful news. Nothing like hearing good news. I'm so happy for you. Hope you are celebrating.

Seda:

CONGRATULATIONS! Largo deserves a big bone and hug. Hope every scan you have in the future will also be GOOD. I know everyone on this forum loves to hear good news, so CONGRATULATIONS, again.
julieann

great news

Seda -
Smart Dog!
Congratulations and here's to a full recovery!

Marlene

Seda Bug

Way to go. Isn't it the truth about how hurtful so called friends can be? You may enjoy our thread "Don't you just hate it" on the coping/anger and fear forum. It has grown to 22 pages with over 13,000 views as the posters have shared similar frustrations. Give it a read as it sure made me feel better to find out that my experiences were not unique. It happens to most oral cancer patients.
charm