Becky,

OC is not all that common of a cancer and there is a good deal of variation in OC.

Most NCI designated CCC's cancer centers don't really see that many new cases a year. Only a handful diagnose over 200 cases a year and most less that half that.

Up until recently the best RT machines (IGRT/IMRT) could only treat about 70 patients a year (on a single shift basis) and for OC I would want a really good machine with an excellently programmed treatment plan.

So I encourage you to get other opinions and eventually work with a treatment team that routinely handles OC cases or at least is very well affiliated with a center that does.

These days, pulling all the teeth should not be done unless the teeth are real bad or the location and invasiveness of the cancer requires it.

In my case the CCC's dental center just snap a panoramic xray. A DDS of Prosthodontics reviewed it and did an oral exam. He told me my teeth were fine. They then cast the molds for my fluoride trays. Likewise, I have a few crowns, root canals and fillings.

Becky, you mention SE Medical Center, so probably the closest accredited CCC to you is Baylor in Dallas. It is a designated NCI cancer center of excellent repute and handles over fifty new OC cases a year. I strongly advise you to consider getting a second opinion from Baylor and ask their opinion about local care and treatment back in Oklahoma (Durant Oklahoma?).

Just the opinion of a Ole Texas Aggie

M.D. Anderson in Houston is world class, and it's where I would go if I lived within 5,000 miles! (well, THAT would be a problem, but I would get there if at all possible.) They are experienced with oral cancer surgeries, and they work with more local hospitals, "cookbooking" treatments to be carried out closer to home if a patient can't come back to Houston often, or can't stay for treatment. I did not have my surgery there, but if I need more (Please not!) there is no question that I would go there. In this part of the world, MDA is the place to go. I never hear of Baylor in Dallas for cancer treatment, though I know that it is an excellent institution overall...but probably not a CCC. If you have any way at all, make an appointment at MDAnderson. Use the internet: www.mdanderson.org and make a self-referral on the internet. Describe your diagnosis and treatment so far, and they will call you back within 24 hours to make you an appointment with the appropriate department and physician. Dr. Randall Weber is the chairman of Head and Neck, and I had an appointment with him for a second opinion after my surgery, and he is kind and very, very thorough. You can read all about him and the other physicians and the department online.

MDA is arguably the finest CCC in the world. But if the distance is a deterrent Baylor has two fine CCC's and a third under construction.

Baylor University Medical Center
Baylor Sammons Cancer Center (CoC accredited CCC)
3500 Gaston Avenue
Dallas, TX 75246
Phone: 214-820-3535
www.bhcs.com


Baylor College of Medicine
The Dan L. Duncan Cancer Center (newly NCI designated CCC)
One Baylor Plaza
Suite 450A
Houston, TX 77030
Telephone: 713-798-1354
www.bcm.edu/cancercenter

I'm getting on the bandwagon with August. MDAnderson is a world class facility and their head and neck department is staffed with an excellent team of clinicians. I had the good fortune to have Dr. Weber as my team leader and was more than impressed with his compassion, thoroughness and cutting edge treatment (shouldn't all surgeons be cutting edge? LOL.) Living in the suburbs right outside of Houston, there was not a moment's hesistancy to head to MDACC for treatment. If you can get there, it's worth the trip.

Susan

Becky,

I have to say I hate dentists to begin with and just the thought of having one if not more teeth pulled would scare me too! Just know whatever is decided it will be for the best and is one step closer to having a long, healthy life in the future. Every tooth lost will be one less problem to deal with later down the road.
It took only two days for you to tell your Mom? That's good actually. We Didn't tell hubby's Mom till after he started tx. And we didn't tell her about his surgery till after he healed and was feeling good enough to talk to her. Not saying it was the right thing to do. But it's hard to talk about and so hard when you know your adding some real worry to the minds of people that love you. Now I know we should have told her sooner. She has been such a great resource (retired oncology nurse) and so helpful with the little things that we can do that we never would have thought of otherwise. We were afraid to tell her since she knows prabably better then anyone else what his dx meant. She just lost her husband last year to a long illness and we just didn't know how to break this to her. Our concern for how she'd take it was unwarrented. Even though she's older and we think of her as fraile she has rallied and been a real comfort to us.
Try to stay distracted as much as possible right now. And above all. Take to doing and eating everything that makes you happy right now! That way when you're at that point that your drinking the same old boring starwberry shake (or equivilent) you can imagine that awesome steak dinner you enjoyed just a few weeks ago. And when having one of those days that your feeling completly worn out and rundown you can think about that bazaar you went to or movie you saw or that wonderful day in the park you had just weeks ago. And remember no matter how long it feels, it is just a few weeks out of your life!!! and it will be over and you'll be feeling better and better each new day until it is all just a bad memory.
~hugs~ Ija

Hi All,
Sorry it has been so long since I posted. There have been many changes since I posted as you can see by my signature. I am a patient at Cancer Treatment Centers of America in Chicago. I feel confident that I chose the right place for me. The doctors and staff are always on their toes, they are not only good but they are very compassionate.
There is a CTCA in Tulsa not too far away from where we live in OK,but because my insurance is Blue Cross Blue Shield we had to come to Chicago. Which is okay, they flew us here and they pay half of our hotel fee. It costs $40 a day but all meals and tranportation are free.
I had a port put in the day before Thanksgiving and it is doing fine. I will be having a peg tube put in next Monday. I was hoping to avoid this but according to the doctors I won't regret it. My mouth is already too sore to eat. I have just been drinking nutrition drinks and soups. Above all I want to keep my energy and defense system up.I just hope it doensn't make me stay stiff and sore. If you have or have had one, I would love any tips or advice on what or what not to do when I get one and how long I will stay sore.

I hope everyone is enjoying their holidays. Best wishes to all and my prayers go out to you and your loved ones.
Merry Christmas!
Love, Becky

Becky I had to have al of my teeth removed. I was going to get radiation seed implants put into my tongue after i had radiation and chemo.. THis after surgery at Ohio State James CCC. Sometimes it's a necessity and has to be done to prevent infection. I had 3 infections and they aren't pleasant. I miss the my teeth and stll can.t eat beacuse my mouth still hurts from the implants. I can't even get a date or near date when I will be able to get dentures. THe worse part of my journey was the implants and I would not wish them on anyone. hey had to be agressive with the cancer and went for it. good luck.

Becky from one who learned the hard way,, Go see and get more opinions, I had to go thru 2 or 3 wars so far from OC and if I would have listened to the 1st Dr I woukld have gotten rads and chemo and maybe still have my teeth and a tonuge that feels like something fighting me but my friend. Listen to the people in here. Some are very knowledgeable. Good luck with what they do and I hope the OC is gone forever when you finish your procedures.

Becky,

Please continue daily swallowing so as not to develop post Tx swallowing problems that can last a lifetime.

I personally think that the Port is a great idea and one that should be standard practice.

You need to consume as much as 3000 cals a day and 48 ozs of water daily. Make that a goal each and every day and only use the Peg as an emergency backup plan when you just can't meet those goals.

David,, you missed the carnation VHC plug. LOL They are gonna replace you...Humm I need money, I wonder if maybe ....LOL Don, I can guarantee you Ohio State James CCC sees one heck of a lot more than any 70.. There were that many in the cancer unit of the Hospital with OC that they had surgery for.Me included and JeffL Probably too.