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#14743 12-30-2003 11:24 AM
Joined: Dec 2003
Posts: 11
SteveS Offline OP
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Joined: Dec 2003
Posts: 11
Sometime in the future I'll move off this topic but for now I appreciate the input and a chance to write about what's happening.

I had a long talk with my GP on Saturday. Fortunately he's a neighbor and a friend. He said to not let my imagination run wild but to gather facts. I now realize that for the common guy medicine really is a black hole. You just rely on your doctors to help lead you.

My wife and I met with my ENT on Monday afternoon. My parents were visiting so my dad went which helped a bunch. To this point the pathologists and ENT couldn't confirm that it's cancer. 2 out of 14 slides came back highly suspicious for cancer, add to this where the tumor is located (common place for cancer on base of tongue), and it was decided that I take the next step. So I'm having a second surgery tomorrow (New Years Eve). This will include removing a little more tissue and doing the pandoscopy (sp?). My New Year's gift will be my final diagnosis.

Again thanks to y'all for responding. It's helping me keep a level head.

I do have one issue. I keep hearing that I need a multidisplinary team to really advise me on my treatment. At this point I do not have this and am not sure those around me understand this need. Maybe I have not voiced it strongly enough. How do I take this step? Do I call the hospitals? Do I talk with my GP and get his help? How do I go down this path?

Steve

#14744 12-30-2003 12:42 PM
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The following is a quote from one of Brian's earlier post. I wasn't sure how to direct you in answer to your question. I personally got a second opinion from MD Anderson by calling directly to the department that is appropriate. Head & Neck Cancer, and then I also got a referal from my doctor when they were taking a bit longer than I thought they should to scedule me. I would check the listing Brian mentions and talk to your GP if he is the kind of Doctor you feel will be helpful. If not you can do this yourself with copies of your records in hand.

"It is essential that you go to a multidisciplinary cancer center as Gary has suggested, where a radiation oncologist and doctors of many different disciplines, such as surgery, chemo, etc. will decide TOGETHER what is best for you. Also take a look on the resources page under the link to "Best Hospitals" for other possibilities for treatment. You may decide to not stay in your local area for treatment, or perhaps you have family near a facility with a rating that you find attractive."

Good luck,
Dinah

#14745 12-30-2003 05:50 PM
Joined: Mar 2003
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Hi Steve, Right now you seem to be in good hands even though it is mostly the ENT. The multiple diciplines are important when considering treatment options, and as the treatments progress. At this point you don't yet know for sure what you are up against. If it is cancer then it seems it has been found pretty early. That will help. Ask your ENT what will be available if it is cancer so you can spend some time becoming familiar now just in case.

Hang in there!


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.

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