#28780 03-31-2007 09:32 AM | Joined: Mar 2007 Posts: 26 Contributing Member (25+ posts) | | 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 09:50 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 10:27 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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This is another custom island. This one could be used for ads. This spot is one of the best places for ads on your site to be placed. This can be enabled/disabled on a per forum basis.
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