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Radical Cystectomy or More Intravesical Chemo

7 years 5 months ago #41961 by wsilberstein
If indeed a radical cystectomy is what my consultants recommend, it's highly unlikely that there would be time to search for a suitable new associate and, unfortunately... I wouldn't be able to afford to pay a new physician. Being a pediatrician isn't all that lucrative... but that really plays no role in the final decision. It just adds to the stress.

-Warren
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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7 years 5 months ago #41959 by Lynda
I can't comment on a neo-bladder, but the expert panel (the guys) who have them will certainly chime in.

I would go with the RC and whatever diversion it gets you. I had my RC with IP in 2010 and haven't had too much trouble with it. It does take training and will have you off your feet for a while, but what's more important - your practice or your life?

Since your practice partner is retiring for his own health issues are you contemplating taking on someone new? Could this person get your practice thru this surgery and adjustment period?

Lots of decisions to make, and we've all been there. Good Luck to you!


Lynda

Lynda

3 years UTIs
Indiana Pouch - July 2010
Pulmonary Met. - May 2011
Chemo started June 2011

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7 years 5 months ago - 7 years 5 months ago #41957 by mmc
Here is one of the better sites for post op expectations/instructions:
http://www.med.umich.edu/1libr/urology/postcare/cystectneobladder.htm

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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7 years 5 months ago #41955 by SailorMan
Warren, sad to see you back. I think that you're on the right side of this in exploring the R/C. I have heard of too many people who tried to keep the bladder and lost more than their bladder. I had an R/C with Neo in July of 2008. Subsequent scarring in the urethra followed by a ureteral stricture and eventual loss of a kidney has kept me using a suprapubic cath so I can't say much about incontinance issues.

From a work standpoint though, I was in the hosp for 8 days after the R/C and upon returning home and "resting" for 4 days, I began working form home via the internet and phones. Part time at first as I could barely do 3 hours per day but added an hour or two per week until I was back to full time from home. At about 2 months, I returned to my office and a few days later went on a 3 day business trip. I was not very strong but was able to function fairly well with breaks as needed.

If I was in a situation like yours, I would probably go for the Ileal Conduit as the recovery and incontinance issues are less of an issue.

Sloan Kettering?

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7 years 5 months ago #41954 by wsilberstein
Hi everybody. I'm back. It's been about a year. For those of you who don't know me, I had high grade noninvasive cancer (TaG3) plus CIS in 12/2000. My urologist treated with mitomycin C instead of BCG and I remained cancer-free for 10 years. Unfortunately I had complications of treatment - a urethral stricture that caused me no end of grief and finally required a urethral reconstruction in 2009. I've had many follow up cystoscopies and often had areas of redness. Last year when I had an ill defined epididymal mass for which I needed surgery I asked my urologist to biopsy my bladder and I had CIS. Fortunately with my urethra repaired I was able to be treated with BCG, after which my biopsy was negative for cancer. Subsequent to that my urologist continued to see a red area in my bladder, and he agreed with my request that if it persisted for a year we would biopsy it. The results - a recurrence of CIS.

I've already posted this on the non-invasive board but decided to repost on the invasive board because I want to hear from people who've had radical cystectomies.

I have read that delaying cystectomy to preserve the bladder can end up shortening one's life. I have no great love for my bladder as it has caused me a great deal of pain, and since I haven't had an erection since the urethral surgery 2 years ago, I'm certainly not concerned about the sexual side effects of a radical cystectomy.

My urologist does not think a radical cystectomy is called for and would like to treat me with intravesical valrubicin. I'm tempted, not because I want to keep my bladder, but my partner (I'm a pediatrician) is retiring due to a recurrence of pancreatic cancer leaving me alone to run our practice. I don't see how I can manage being out for 6+ weeks. But then I could have a reaction to the valrubicin... Probably not an issue as far as work since I've gone to work many days in pain over the years.

I told my urologist I need a second opinion and he recommended William Huang at NYU. I also got a referral from the uro who did my urethral reconstruction to Douglas Scherr at Presbyterian/Weill Cornell. Seeing both of them this month.

So, now I'd like you all to cast your votes and voice your opinions as to my next step.

I'd also like to know what to expect if I have the radical cystectomy - length of hospitalization, recovery period before returning to work, dealing with continence issues, complications any of you may have had.

-Warren

-Warren
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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