Just found out 4 days ago i have tumors on tongue/tonsil. Was examined by 2 Oral Surgeons. Have an Appt for Ct scan on Tue w/follow up appt w/ENT Specialist later in day. was also told tumor has metastisiesd to neck. Any one who can help prepare me for what i should expect, stay clear of, and any questions i should ask of the ENT Specialist would be greatly appreciated.

Jim....there are plenty of people here who have had identical tumors. Mine was in another place. I am betting, however, that the advice you'll hear most often will be to seek advice from a large Comprehensive Cancer Center. I see that you are in Texas. M.D.Anderson is one of the finest cancer centers in the world! With the neck metastasis, I sure would want to know that I had been to those how know the most about how to treat it. Good luck. I know that frightened feeling. I hope you have someone who can accompany you on your medical visits, to help listen and remember....or to run a small recorder....and to keep you company as you "make the rounds."

You have come to a wonderfully caring, informative, supportive place. Keep us posted.

XO--Colleen

Hi Jim
sorry to hear your news,and i bet you are feeling totally overwhelmed,and very apprehensive.
These first few days can be very hard,as you try to come to terms with your diagnosis and all its implications,but this is the time when you need to try and keep a focus on all the information you are being given,so that you can consider your options,understand what the doctors are telling you,find the best place for treatment,and get all your questions answered.


Write down your questions as they come into your head,so that you don't forget any in the heat of the moment .Make sure you ask them all and get answers you understand.No question is too trivial if it is worrying you so don't let them rush you.

Things will probably move pretty quickly and can be very confusing,so take the time to read Brians post at the beginning of these boards to get an overall view of how things are likely to progress,and how to get the best information you need.

Don't trawl the internet for stuff as this can be counterproductive,and you will find everything you need here on this site.

Lastly, get a support network in place .Someone to go to the hospital with you and if necessary take notes on everything discussed,and who can help with practical things like driving if needed and just to hold your hand in general.its a lonely path on your own,and a very long one,with many mountains and vallies to negotiate.

Everyone on theses boards has a different story to tell and the combined experiences make for a pretty knowledgable group so ask away any time you have a problem.

welcome to OCF and good luck on your journey

liz

Hey Jim

One thing that helped me was to take a small recorder into the meetings with the doctors. They throw so much stuff at you, that it is hard to remember everything in detail. Take notes as you go along as well, and ask all of the questions that come to mind.

Kevin

Jim --

I know how overwhelmed you must feel, as it was about 14 months ago that I got the news. There is an "other worldly" feeling about the whole experience, and, of course, a lot of fear.

Questions to ask your ENT include:

1. What is the T-Stage (effectively size) of the tumor(s)?
2. How many lymph nodes in the neck are involved? Which side(s)? Size?
3. Where is the nearest Comprehensive Cancer Center for treatment?

I had a similar diagnosis, just no tonsil involvement. It is vital that you get evaluated at a CCC or comparable facility, where you can be evaluated by a team of Surgical Oncologists, Radiation Oncologists and Medical Oncologists. Most of us have had some combination of radiation, surgery and chemotherapy, and you need the input of these specialties to come up with a treatment plan that will give you the best options.

It was unclear from your email whether you have had a biopsy yet -- because it ain't cancer until the biopsy says it is.

Stay positive, do exactly what the doctors say, ask lots of questions, and visit here frequently. Lots of people here who have had very similar diagnosis to yours.

Best of luck. We will be here to help you.

Jim,

How did they conclude that you have cancer and it had spread to your nodes? I don't see any mention of a biopsy or biopsies?

Jeff L: Thanks for your suggestions. Tommorrow i am to have a CT Scan and i assume a biopsy. As I've learned I DO NOT have a cancer unless a Biopsy is performed and the results say i have cancer. I'll keep you abreast of my journey..Many Thanks again...Jim D.

David: Tommorrow i am to have a CT scan and i presume a biopsy. I will keep you posted..Thanks..Jim D.

Jim,

Please RUN to a CCC as fast as you can if the results come back cancer.

Do as these people suggest. The biopsies and scans will be your guide throught out the diagnosis. Here's hoping you don't have this nasty stuff that most of us do. Got ya in the prayers.

I was in shock thank god I had my husband there with me. I had one note pad and calendar that I wrote down all my questions and notes from my doctor visits. Do not do this alone and remember we are all here for you and anyone else your spouse or friends for support. It all happens fast i was in surgey within a week. My biospy showed Cancer and the CT scan showed in enlarged lymph nodes that ended up to be stage 4 cancer. I have just started remission we all can get through. Will be thinking about you ! Keep us informed.

Hi Jim,

My local ENT had me beyond overwhelmed with the initial diagnosis and his proposed treatment plan. Best thing I did was head to MDAnderson where I wasn't a novelty nor was my cancer. The head and neck department and the team who treat me are top notch. If you can get a second opinion there, by all means do so. You can pursue an appt. online at their website mdanderson.org. You can always change your mind or cancel. As others have said, bring someone along, there's a lot of info being directed your way at a time when your mind is not necessarily at it's best. I had a team of family and friends help me through. Here's hoping a biopsy proves them wrong.

Get on line and find # for MD Anderson in Houston if the biopsy is positive.Actually as said earlier, you may call and begin the process tomorrow just in case! AND especially if it is indeed the nassty and compllicated.They will arrange everything.We traveldedfrom Chicago, called and had an appt in a couple days, my daughter's case was complicated. Will Never have a regret about the visit there and the consultations. You would take any and all results/consultations you have had and meet with 3 Doctors, an Oncologist, a Radiology Oncologist and a Surgeon specializing in this. They will confer and make a plan, and you can feel confident in their advice. You can make your own appt, or have your Doctor make it. You should be able to be seen in a few days, if this is indeed the nasty and especially if it is complicated. Do not hesitate.......

Jim D here..hav'nt posted since 5/18. Was diagnosed w/T3 stage 3 tonsil and tongue cancer through biopsy. Started Chemo and after 4treatyments had to stop. Numbness in feet and extreme blistering on face and head. Regimen given was Cisplatin/Taxol/ Erbitux. Will soon start 33x radiation treatments combined with 5 times a week Carboplatin for 3 weeks. Face and head has cleared up..but numbness remains after 3 weeks since last chemo. Dr said will change to carbo from cisplatin..this still has me concerned. Read where carbo still can cause numbness in extremities. I write this hopeing someone who might have similar experince may respond and give me advice.