34 year old newby in Seattle

16 years 2 months ago #12820 by Rosie
Replied by Rosie on topic 34 year old newby in Seattle
Pat said (and I agree to a certain extent): "that’s why its a really really good idea to have your TURB and pathology done at a major cancer facility with top notch surgeons and pathologists."
The exception, I have found, is to find a top notch rated urology medical hospital center which may or may not be rated as a "cancer" facility or center. Johns Hopkins, for example, is not known as a "cancer" center but ranks in the top in urology. University of Iowa with Dr. O’Donnell is not known as a "cancer" center but ranks very high in urology particularly for bladder cancer. Dr. Lamm is in his own private practice in Arizona and tops in bladder cancer and urology. The center I am going to now in Norfolk, VA is not known as a "cancer" center but ranks in the top 50 in urology - the highest in my state. The gyrus procedure I told you all about earlier came about for use in my bladder tumor resection because the highly ranked urology hospital in Norfolk (Senterra) used it for prostate problems in men's urology. Some cancer hospitals like "Sloan" and "MD Anderson" also are ranked highly in urology but not everyone has access nor needs access to "cancer" hospitals if they can find a top notch rated urology hospital or center in their area. In Florida where sodacat is The Univerisy of Miami with Dr. Soloway is tops in urology. Lynn, you can do a search for hospitals/medical centers in your area and their ranking in urology if you agree with my opinions here. Rosie

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16 years 2 months ago #12814 by Mike
Replied by Mike on topic 34 year old newby in Seattle
Pat, Im not Seattle,Im from Florida,but thanks for the info.sodacat :)I guess I got off tract in Lynns post, sorry,my friend

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16 years 2 months ago #12810 by Patricia
Replied by Patricia on topic 34 year old newby in Seattle
Miami...really? All the way from Seattle?...Dr. Mark Soloway by any chance? He's a top man. Theres the Fred Hutchinson Cancer Research Center in Seattle which is part of the NCCN though i don't know about their particular expertise in bladder cancer.
Pat

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16 years 2 months ago #12806 by Mike
Replied by Mike on topic 34 year old newby in Seattle
:)thank you Pat, Im going to Miami for the next one , the University Hospital so Ill see what they say.Have a good evening ;)

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16 years 2 months ago #12798 by Patricia
Replied by Patricia on topic 34 year old newby in Seattle
Well sodacat...thats why its a really really good idea to have your TURB and pathology done at a major cancer facility with top notch surgeons and pathologists. My first specimen from my TURB was not even readable to the pathologists at Memorial Sloan to which i had a second TURB and it was found that the first uro did not even get the margins of the original tumor...no doubt in my mind they saved my life.
Pat

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16 years 2 months ago #12794 by Rosie
Replied by Rosie on topic 34 year old newby in Seattle
Lynn, Your statement that your "tumor" is just outside your left ureter orifice prompted me to alert you about the special type care that is taken in the resection when close to the ureter orifice. I have had 5 recurrences of low to mid grade papillary transitional cell carcinoma (by your description it seems to be papillary). My last resection was 3 months ago. I just had my post-op cystoscopy checkup which was CLEAR. My newest urologist said he believes one reason I have had so many recurrences is because prior urologist were hesitant to resect too close to the ureter orifice because the threat of closing off that opening from possible scarring that could also affect kidney function was a greater risk to me than my low grade recurrent bladder cancer. Actually prior urologists who had done previous resections did tell me something to that effect. Dr. Lance said he goes with the idea of getting rid of all the cancer first with the most proven and safe type instrumentation then dealing separately with any problems that might arise if need be.. A renal ultrasound in October showed there was no damage to the kidney function. This time a different instrument was used for the resection with a bi-polar instrument called a gyrus. The use of the gyrus instrument allowed close margins and even a slight 1 mm resection of the left ureter orifice without damaging it or my kidney function.. He also said instilling the Mitomycin C at resection will play a part in avoiding recurrence. This was my first instillation of Mitomycin C. I see there are many on the forum and possibly ACOR that have recurrent bladder cancer close to the ureter orifice. Some on the forum that have had tumor outside ureter orifices had a shunt installed to keep the orifice open. Perhaps the use of a Gyrus instrument, which has a bi-polar action rather than the instruments used prior that which had a polar action is an answer to you to be better guaranteed of a complete resection with damage to the ureter orifice or leaving tumor residue. I hope my seven and a half years experience with this recurring papillary TCC just outside the left ureter orifice and what I have learned through much research will help to benefit you and others. I suggest you ask the doctor about any special care or instrumentation he may take because of the location of your growth. My first TURB I did have a catheter overnight. The second time, I had a catheter for a week. After that no other cathetars after TU"RB.
Rosie

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