Becky,
Since there are no NCI supported Cancer Centers in Oklahoma you might want to look for an nearby Comprehensive Community Cancer Center (or hospital cancer program)accredited by the American College of Surgeons Commission on Cancer (CoC).

Both NCI supported centers and CoC accredited centers will stricly follow NCCN diagnosis and treatment guidelines, but CoC centers are not necessarily associated with Universities or Research Institutes. Most cancer is treated at a CoC.

Please check the American Cancer Society's Cancer Treatment center locater site at:
http://www.cancer.org/docroot/FTC/ftc_0.asp?sitearea=ETO

It will help you locate nearby CoC and/or NCI accredited and supported treatment centers.

Hi Becky,

I would like to reiterate exactly what everyone else has suggested that you get another opionion at a Cancer Centre and also if you can take someone with you to attend appointments.

During the appointments two heads are better than one because it can be really difficult to take in everything that they are saying to you but with another pair of ears it makes it just that little bit easier to remember things and also having someone else with you can help you to ask questions that you may not even think of. Taking notes is also a good idea.

Karen

Becky,

This is your life. You need to take control and make sure you are as comfortable as you can be with your treatment. I know this is all Greek to you now but you need to get comfortable with your options. Having an unnecessary neck dissection is plain foolish and life altering. Not having the correct treatment for your oral cancer is plain foolish and life threatening. Please stop and get another opinion or 2 (I got 5) before you do something that you may regret for the rest of your life. I decided to go with Moffitt, a CCC, because they treat 100's of cases just like me a year as opposed to my ENT who said he treats maybe 5 people like me a year. NO BRAINER in the "who do I want to place my trust in" category.

Please don't blindly place your life in the hands of the first doctor you see even if he is a specialist; even if he is well respected; even if he is this or that. Would you buy the first house you see? Would you even buy the first car you see?

Becky --

I agree with David (and everyone else). My husband's cancer was not identified until the excisional biopsy that, fortunately, removed it all. Because his first pathology report showed dysplasia, and not cancer, a local ENT did the excisional biopsy. But as soon as that biopsy report came back showing cancer, he was seen by an ENT at a comprehensive cancer center an hour or so away, where ALL they see is oral cancer. Had further treatment been required, he would have gone there instead of a closer local facility.

The ENT who did the biopsy is an excellent doctor and was well trained (chief ENT resident at the Mayo Clinic, etc.). But as a general ENT, he also puts in ear tubes, repairs deviated septums and such. His focus is not oral cancer.

Especially given the wide variation of treatments your doctor has presented, it's in your best interest to be seen at a cancer center where a team of doctors from a variety of specialties (surgery/radiation/chemo/etc.) will come up with a personalized and coordinated treatment plan. You want doctors who deal with oral cancer every day. Most cancer centers react quickly when a second opinion is requested -- just be sure you have copies of your reports from your current doctor, the lab reports and slides from your biopsy.

And keep coming back -- this is a great place for information and comfort.

Becky,

I know this is hard and you would like it taken care of in a neat and convenient package...close to home, doctor you know, etc. I know you are reeling from the news and feel like you are being bombarded with information you don't feel competent to absorb or make sense of. We all know the feeling of facing that mountain unprepared for what lies ahead.

But start with one phone call to that CCC. Make that appointment and then get the necessary information that Leslie mentioned above - scans, biopsy slides, reports together. You can do this and most CCC's have personnel (new patient advocates) that will walk you thru the process. You will be so glad to have the experts at these centers look at you and discuss your case at a team meeting and give you a treatment plan that gives you the best chance for beating your cancer.

Do come back and ask questions...we all want you to have the best chance!

Deb

Hello Becky, can't say enough about all the great advise these people are giving you. I am fairly new to this too and this site can give you a wealth of knowledge through each stage of your treatment.

Initially my wife was scheduled for surgery the week following her first consultation but that changed when they performed a CT scan and found the tumor was larger than they thought. After her surgery two weeks later (yes the waiting was hard), the surgeon stated that he was glad they did not proceed with the first scheduled surgery as they would not have had a surgeon scheduled to do a tongue reconstruction (forearm free flap) which was necessary due to the tumor size. I think a second opinion would be great but at least get a CT scan to make sure they know what they are looking at before starting surgery.

Unfortunately you have had a bombshell dropped on you but on at least you have found a good resource when questions arise.

My current surgeon at U of Wash CCC, who did my free flap procedure referred to lymph nodes as "repositories for cancer cells"...

Hi All,
It's me again. Today my husband and I visited the CCC that my doctor referred me to. We did not hear the news we were hoping for. After a long visit with the oncology/radiology doctor, she scheduled me for a Pet Scan next Monday and a follow up for the results the following Thursday. From there, she wants send me to see an oral surgeon to see if I would have to pull my teeth. She also gave me options of having a Chemo IV patch while my gums are heeling and wants to put in a peg before following up with more chemo and radiation.
I am so scared,I can't believe this is my life. I graduated from college at age 40 in May of 07 with a Bachelors Degree in Special Education. I taught in Hawaii last year and I moved back home this summer where I landed a job in my home town. My husband and I married May 23, 2008 after being together for 18 years. I moved back home, rented a house, taught 3 days and BOOM!! found out I didn't have a canker sore, I had cancer!

I agree with all of you that said get more opinions!! There are a accredited centers not too far away from me, I want to get opinions from at least two of them before going past the Pet Scan on Monday.
Thank you for all of your advice, I will be looking forward to much more... Thank you for being here!!
Much love to you, Becky

Becky, I wish you all the luck in the world. Luckily it appears you have found this early. I also just had another pet scan and found additional problems while I have been waiting to get dental work done, staging, etc. This is a disease I have learned must be planned out and things don't necessarily get done as quick as I would like for them to. I am unable to get to a CCC but I do have some wonderful Dr's here. Many of them. ha ha You will get the best of care at a CCC. Best of Luck, Angel

Becky:

Sorry to hear of your misfortune. Sounds like your life had been going so wonderful and now this happened. You will overcome this, its not easy, but it can be done. Then you can move on and enjoy everything life has to offer again.