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11 years 5 months ago #26125 by Melodie

Looks like your getting lots of good info. here on forum as I knew you would. I'm very happy with my Indy but everyone has to make the choice of which diversion they "think" will work best for them. Remember that what others choose may not be the best for you, and also consider how much time they have had the diversion. Than again, some do not get to decide due to complications. We all come from different backgrounds, with different life experiences, and I think much of that determines what we think will work for us. Me for example...I was willing to lose my bladder but if the surgeon had wanted my leg, I would have said, forget it...came in with it and I'm leaving with it.

My diversion would be pricey if I didn't have good insurance, so for some they might opt for the least expensive to maintain. Also, some may not want to manage all the supplies. I don't have my stoma in my navel as my surgeon doesn't like to use the navel in case there is ever a problem with the colon. But mine is flat to the surface of my skin and so doesn't prevent me from wearing most of the clothes I could wear previously. Since I'm a gal, I really did not want to mess with having to cath myself in an awkward postion and not be able to see what I was doing. I have not met or read of any women who have neo-bladders that have never had to cath themselves. When I had my TURB, I came home with a Foley catheter for 5 days...my urine draining in a bag strapped to my ankle annoyed me to no end...hence, I did not want to get the bag. I was very fortunate in that I felt completely comfortable and at peace with my decision to get an Indy and it has met my expectations. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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11 years 5 months ago #26105 by Patricia
lots of debate on that....from Eila Skinner at USC/Norris

A selected review of the literature was performed to evaluate outcomes with intravesical therapy vs. initial cystectomy in this patient population, with a focus on identifying risk factors for failure of conservative therapy.

Many studies in the literature fail to include central pathologic review and re-TUR clinical staging, and there are no randomized studies comparing outcomes with these two initial approaches. Retrospective studies of patients with high-grade T1 tumors treated with initial intravesical therapy suggest that approximately 30% of patients will ultimately require cystectomy, and 30% will die of their disease with or without cystectomy. The risk of progression continues for the life of the patient, and late recurrence and progression is common. Initial clinical and pathologic factors can be identified that predict a high risk of progression and are reasonable indicators for initial cystectomy.

Radical cystectomy can provide a very high cure rate for these patients and should be considered early in the treatment plan

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11 years 5 months ago #26104 by wsilberstein
Moonerj wrote:

T1 = Tumor invades subepithelial connective tissue
High Grade = Aggressive cancer


True, but I had a high grade tumor (grade 3) and did quite well. I had no invasion of the lamina propria (Ta). There is a concern with T1 high grade that without removal of the bladder there will be progression and with progression a risk of late metastatic disease; however many are treated with BCG and if there are no recurrences, that might be sufficient.

TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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11 years 5 months ago #26103 by Rockyiss
Go for it Pat , what the heck !!

I go to John Hopkins Bill, they are nice people. Dr. Schoenberg is my Dr. Rocky

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11 years 5 months ago #26101 by britt
All my best, Bill.

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11 years 5 months ago #26099 by mmc
Good Luck Bill, and don't be a stranger. :)


Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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