Yikes! Invasive tumors after 4 years of low-grade

Kat,

So sorry to hear you now need an RC, but the goodness is you may have options as to the kind of diversion you get, depending on how things look to the doctors once the operation is in process.

I was initally dx'd about the time you were in early 07 except mine was invasive. I tried to follow Pat's example as much as I could and have been happy with my Indy pouch. In fact, my doctor wouldn't even consider doing a neo on me since he felt there was so much incontience for women who had neos. I did not have the stoma in the navel as Pat did; mine is just to the right of the navel and a couple of inches down.

I don't get to this site as often as I would like. I am 60 but still not retired and my life is very busy. If you would like to know more about my experiences with the Indy Pouch, please see the link below my name. I do need to update my site to include more recent information. I have had some side effects like lymphdema...swelling in one leg as a result of my intial surgery so I wear compression stockings. I have not had any hernias as some do, but I have had bladder stones and a small fistula which have now all been resolved. So as much as I would love to say we all live happily ever after an RC, it doesn't happen that way. Please keep in mind that we are all different and each situation unique in its own right; none of us ever really know until we get there. Take care and God speed in making the right decision for you. Please take plenty of time to review all the aspects of the diversions to ensure you get what will work best for you and your situation.

Patricia wrote:Thank you for that — I wasn’t sure (I knew that it meant no neo-bladder, but I had already given up on that idea).
If I am being sensible, taking a trip — if need be — is probably wise. I am in central Connecticut, about two hours from Manhattan and about the same from Boston.

Thank you very much,

Kat,
The urethra comes out with an Indiana so that ones not a problem...the neobladder would be. But the neo with females has about a 33% success rate with incontinence or the opposite. And you will have to cath even if they say otherwise.
One of the reasons for so many opinions was in my city which is a major city there just wasn't any uro with any experience with diversions other than the ileal conduit. My second opinion was a flight to MSK and Dr. Herr who did my second TURB and saved my life...a man of few words but a great surgeon. He got the remaining tumor that was left in there and the margins the first local uro missed. I then had to make a decision on diversion. I did a lot of research and decided on the Indiana...Dr. Herr did not want to do an Indiana......soooo...I contacted Dr. Schoenberg at Hopkins who was extremely helpful and actually gave me names of what i refer to as "female friendly" uro/surgeons. So off i went to interview them and truthfully any one of them would have been a fit so a difficult decision.

Best to you
pat

Patricia wrote:I noticed that about Dr. Colberg, and will be sure to discuss the gender issue with him. Seven opinions! Whew!
I think I will post your comments on the wall as a form of encouragement.
Unfortunately, I had two tumors near the edge of the urethra in my last TUR. Have my fingers crossed for Monday’s results.

Kat...you're doing your homework..that's good. Dr. Colberg is ranked high in urology...most of his papers on prostate cancer so very important to ask how many females he does and especially the Indiana.
Never hurts to get that 3rd opinion either. I got 7!!! A bit overboard i know but i figured i had one shot at getting it right.
I'm 8 l/2 yrs out now with the Indiana and i can hardly remember anything else i'm so grateful i'm not one of my friends that wets her pants every time she laughs or sneezes!!! My stoma is in the navel so cosmetically i look just fine. I've had nurses come look at my belly and they could not tell the difference from a real navel and my stoma...its the same size just a bit redder.
Location of the tumor often designates what you are going to get but if its nowhere near the urethra you should have a choice.
pat

Thanks Herb and Sara Anne.