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Diagnosed w/ High-Grade - Need 2nd Check

3 years 11 months ago #47937 by Alan
Here is the link on diversions: http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion

The link has had address changes a couple of times as near as I can tell. I just glad Sara Anne found one of the new ones so I book marked it'

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 11 months ago #47931 by sara.anne
In some cases, the samples obtained during the first TURB (biopsy) have all the tissue necessary for a diagnosis. Sometimes they do not and good medical practice would lead the urologist to do a second biopsy. The need for a second biopsy does NOT indicate that the urologist was not competent...rather that heshe is following the best recommended procedures. In fact, some recommend a second biopsy in all cases.

And yes, it is important for ANY medical procedure to have it done at the very best place possible.

IF it comes to a bladder removal, there are three main types of surgery. The simplest is where the bladder is removed and the urine is routed through an exit in the abdomen and into an exterior bag. The second uses a piece of the bowel to form a new "bladder" where the urine collects inside the body. There is an exit or stoma placed in the abdomen and the patient uses a catheter to remove the urine. This is often called an "Indiana Pouch." The third is the neobladder, where a new bladder is constructed from a piece of the bowel and hooked up to the original "plumbing." When it works, it is almost like a normal bladder. It is usually not used in older patients due to the complexity of the surgery and the recover.

Alan has a reference which I am sure he may post that describes the procedures in more detail. (ALAN, I LOST THE REFERENCE AGAIN) But, right now you need to concentrate on getting a thorough diagnosis and recommendation from a really good center. It is likely that he will not even need to consider bladder replacement.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 11 months ago #47930 by Schmancer
Thanks and good luck. That's part of my confusion in that just as many people seem to be able to get the full diagnosis in one procedure but some people need to wait 4-6 weeks for a second one. It makes it sound to me like it's important to get to the best possible institution right from the beginning.

This page on WebMD describes how they replace the bladder. There is some kind of middle-ground option between the external bag and the neobladder. It's called urostomy. It sounds like with the bag, tubes run directly out of your body into a bag you wear. With urostomy, it sounds like urine is collected internally but must be drained with a catheter. However it sounds like that option is fairly similar to a neobladder so it may not be viable if they're recommending the bag.

http://www.webmd.com/cancer/bladder-cancer/cystectomy-for-bladder-cancer

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3 years 11 months ago #47928 by rike
My husband (69yrs) has just been diagnosed with T3 aggressive/invasive bladder cancer on Dec 13th. We were very fortunate for everything to be moving quickly. Dec 13th diagnosis, Dec 15th biopsy and Dec 17th pathology report with final diagnosis. We went to the Mayo Clinic on Dec 31st, which confirmed the diagnosis and the treatment option.
Chemo for 3 months and then removal of bladder and prostrate at the Mayo Clinic. Chemo can be done locally. We were caught by surprise as my husbands only symptoms were blood in the urine all of a sudden. He also smoked and quit 25 years ago and has been exposed to Agent Orange in Vietnam. Unfortunately the VA does not recognize bladder cancer as Agent Orange caused, prostrate yes but not bladder.
I was very confused, but feel a lot better after we went to the Mayo Clinic to get a second opinion and have it explained better as to the options. they told us a neobladder at his age was not recommended, the recommended a bag (forgot what they called it). I pray that you will get to see someone quicker than you are scheduled now. I was told, when it comes to the surgery you want to make sure you have someone with lots of experience. don't know anything about the clinics in your area. Sending my prayers as I can identify with you in this overwhelming situation.
Rike

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3 years 11 months ago #47925 by Alan
I second Sara Anne's comments on a second opinion. So many URO's see mostly prostatic cancer so a second center that's sees a lot of bladder cancer or a special division for this is very important.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 11 months ago #47920 by Schmancer
Thank you both for the replies and advice. That definitely answered some of my questions.

I am not sure if his tumors are papillary. I forgot to mention that three tumors were found.

I read on another forum of somebody who flew to Memorial Sloan from Florida to get a 2nd opinion, and they found much more cancer in their examination than his initial doctor did. I also read a Newsweek article on cancer in general that said where most cancer treatment goes wrong is in the diagnosis. So it seems to me it's important to go to the best place possible to get this diagnosis right.

I am passing on whatever information I can to him so he can make the most informed decisions. Thanks again for the help and I welcome any and all further comments. Good luck with your treatment, fighterm.

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