#28780 03-31-2007 10:32 AM | Joined: Mar 2007 Posts: 26 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2007 Posts: 26 | IN DECEMBER I HAD A LARGE MASS GROWING OUT OF THE LEFT SIDE OF MY NECK. MY ENT STATED THAT IT WAS A CALCIFICATION GROWING INSIDE MY SALIVARY GLAND AND THAT IT NEEDED SURGERY. DECEMBER 21, I UNDERWENT SURGERY FOR IT. WHEN THE ENT OPENED HE REALIZED THAT I HAD ABNORMAL CELLS THERE. HE REMOVED 7 LYMPH NODES AND 4 WERE POSITIVE FOR CANCER, ALSO THE MARGINS WERE NOT CLEAN. I HAVE BEEN DIAGNOSED WITH UNDIFFERENTIATED LARGE CELL SALIVARY GLAND CARCINOMA. STAGE 4 WITH VASCULAR INVASION. I JUST FINISHED (TWO WEEKS AGO) 33 SESSIONS OF RADIATION AND 2 SESSIONS DIVIDED INTO 2 SESSIONS EACH OF CHEMO (CYSPLATIN). AT SLONE KETTERING MY CASE WAS PRESENTED TO A TEAM OF DR'S REGARDING A NECK DISSECTION AND THE OPINIONS WERE NOT CLEAR. SO THEY LEFT IT UP TO ME. AT THAT TIME I DECLINED IT, AS IT APPEARS THAT THERE IS NOT MUCH INFORMATION REGARDING MY TYPE OF CANCER. I WAS WONDERING IF I SHOULD GET A SECOND OPINION SOMEWHERE ELSE. IF I SHOULD HAVE THE ND OR WHAT SHOULD I DO. THE CHEMO AND THE RADIATION WERE ROUGH BUT I FEEL THAT I HAVE NOT DONE ENOUGH TO CURE MYSELF. HOWEVER I DON'T HAVE MUCH INFORMATION TO GO ABOUT AS THE DR'S AT SLOANE DON'T HAVE MUCH INFO TO GIVE ME.
diagnosed 12/20/2006 with undifferentiated large cell salivary gland cancer
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#28781 03-31-2007 10:50 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | coquito,
If the Tumor Board at Sloan could not advise you I don't see how we could be your next opinion other than to say get a second QUALIFIED opinion and hope for the answers you are looking for.
Good luck and keep us posted.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#28782 03-31-2007 11:27 AM | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2007 Posts: 176 | I would go see Ken Hu and Mark Urken at Beth Israel. They are the best RO/surgical team in NY. Good luck.
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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