CancerCompass message board discussion started by TOMMYNYC on 3/13/2008 http://www.cancercompass.com/message-board/message/all,21946,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Dear Friends, I was wondering how many of you have heard that after a partial nephrectomy (stage 1-low grade-1.2 cm) that this may be considered a curative. If so, what explanation did your surgeon's provide? GOD BLESS!TOM  TOMMYNYC Thu, 13 Mar 2008 00:00:00 GMT In June of 2005 I had a partial (10%) nephrectomy, after which my Dr stated that I should go home & forget about the RCC, as he had gotten it all, and the margins were clean.In April of 07 there were several small tumors found while reading a cat scan that had been done to check on a recent aeunyerism repair. In hindsight even though it was real tiny, it had already gotten into the blood stream. (it is the blood stream that feeds the tumors)   I am now stage 4 with multiple sites and taking Nexavar, which is doing a good job of keeping the tumors stable. (no growth, no new tumors)I belong to an on-line RCC group called "caring & sharing" and my story is the same as many others, that had an early diagnosis.Bill Wilhelm Tue, 18 Mar 2008 00:00:00 GMT Bill,  Hi, how are you?  Thank you for sharing your situation with me.  I am going to pray that these tumors "completely" disappear from your body.  God Bless You!    I was wondering if your stage 1 was a clear cell of papillary renal cell carcinoma?  Also, was it a low grade tumor?   I was told that these stage I tumors are encapsulated, and therefore cannot enter into the bloodstream.  Would you mind if you shared with me your age.  I am wondering if these tumors spread more slowly at an older age.  Is your medical treatment/medication causing you any adverse side effects?  Is it like a Chemo drug?Sincerely,TOM TOMMYNYC Tue, 18 Mar 2008 00:00:00 GMT I wish there was anything curative about RCC...from everythng that i have read and all the doctors in the past year there is none... I hate it!...but miracles can happen Shielahsw Fri, 28 Mar 2008 00:00:00 GMT Hi!  I am sorry to hear about your findings about a "cure."   I was told by numerous Urologists that, if the tumor is caught on time, then it is curative.  If you don't mind me asking, what was your stage and tumor size? GOD BLESS!TOM TOMMYNYC Fri, 28 Mar 2008 00:00:00 GMT According to a G/U (genitourinary)oncologist (which is the type of doctor you should look for, specialist for kidney cancer) at H. Lee Moffitt Cancer Research Hospital in Tampa, Fl  There is NO cure for RCC.  It might not show up again for a while, but it will return.  There is no medication or treatment to cure it, just to prolong the inevitable.  They are working on some things for this type of cancer, but it is rare and most general oncologist and urologist don't know enough about this disease.  I would suggest finding a GU doctor just to be on the safe side.  If you're from the NYC area I would suggest Sloan Kettering.  Hope I didn't scare you but being informed is the key to this disease.  Thomas didn't get dx'd until he was already Stage IV, but we were very informed by his GU onc.  in his 10 months of life after the dx.  Live life to the fullest always and God bless.Best Wishes to all,Cindy Cindy611 Wed, 09 Apr 2008 00:00:00 GMT Cindy, with all due respect, I reject what your Doctor is telling you and there are many RCC specialists that will also too.  Surgery, when used for RCC if caught early, CAN be curative.  We just don't know which patients will have a reoccurrence of RCC.  Most patients with RCC, clear cell type (which is the most common) will not have a repeat visit from it if caught in the pT1a stage.  However, there are always cases that have defied the odds and do return.  That is why we must always remain vigilant and stay healthy and keep our immune system strong.  My particular cancer was caught early.  At this date, I'm almost 5 years out and still NED.  NO GUARANTEE, but doctors at Mayo have statistically presented my odds are 97% of being alive 15 years after Dx and Tx from my cancer.  They can base their predictions from literally thousands of cases stretching back to the early 70's.  Yes, they are just statistics, but they CAN base their predictions based on that huge subset/database and that is what they are, predictions.Tom, if you care to email me, I would be happy to respond to your questions. Photogman photogman Tue, 10 Jun 2008 00:00:00 GMT