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Choosing Radical Cystectomy

5 months 3 weeks ago #58856 by Jacko
Hi Shacky 73

An easy decision for me, I went for the stoma and external pouch. Several reasons:
1. I'm 69 and body image is no big deal for me, I can still swim in the sea if I detach my pouch and wear a T shirt. Having said that I understand why body image might be a problem for others. The pouches are almost undetectable and clothing choice helps; tight jeans are out!
2. Main reason was less complications during the surgery and after. The internal diversion solutions sometimes can give problems which are a nuisance to deal with. I didn't want any of that; have the surgery and get back to normal life ASAP was my aim. I have had a dream run in recovery and manage the urostomy without any issues. True, it's a new normal but my wife and I have got over it reasonably easily.
Happy to discuss further.

Jacko

CIS diagnosed May 18
2 TURBS
6 BCGs 2018
3 Maintenance BCGs 2019
Return of CIS Sept 2019
Bladder, prostate and urethra removal Oct 2019
The following user(s) said Thank You: Shacky73

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5 months 3 weeks ago #58854 by Shacky73
What diversion did you choose?

T1 Grade 3 with CIS

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6 months 1 week ago #58786 by Jacko
Hi gqkandrk

I think we are bladder buddies in some respects; I am 8 weeks out from having my bladder, prostate and urethra removed. I'm 69 and reasonably fit and lean.

I was diagnosed with CIS in June 2018, had 2 TURBS, 9+3 BCGs by Feb 19, was OK until Aug/Sept 19 when the urine samples and biopsies showed a return and that it was in my urethra through the prostate area. I still had no 'invasions' into the bladder wall but CIS is a bastard and can soon get out of control. A second round off BCG has even less chance of being effective and how do you treat the urethra with BCG failing clamping off the end of the penis?!! So the decision was easy for me; 'if in doubt cut it out!' because if it reached the prostate it becomes an immediate Stage 4 situation.

Post operative pathology showed CIS was everywhere in the bladder and that I had bad prostate cancer though it had not escaped. (I had not been able to keep up with PSA tests during all this time to check my prostate because BCG messes with the tests). Unfortunately there is some evidence of CIS in the lower ureters which will have to be monitored. All this shows how aggressive this stuff is and vindicates the decision to go ahead with removal. If I had made that decision in June 18 maybe my ureters would be safe now, who knows?

In summary, I have had no doubts about my decision; 8 weeks out and I'm feeling OK. I can describe my experience in the first few weeks post the operation another time if you wish and what was helpful and what wasn't. Suffice to say the Docs know all about cutting you up and sewing you back together but it is the nurses who give you your life back.

Come back if you wish.

Mel

CIS diagnosed May 18
2 TURBS
6 BCGs 2018
3 Maintenance BCGs 2019
Return of CIS Sept 2019
Bladder, prostate and urethra removal Oct 2019
The following user(s) said Thank You: henristl, gqkandrk

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6 months 1 week ago #58785 by Boat
You’re welcome.

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6 months 1 week ago #58784 by gqkandrk
Dear Boat - I am thinking along the same lines as you are. T1 High grade with CIS. Thank you for sharing your thought process.

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6 months 2 weeks ago #58778 by Boat
I just chosed RC.
Why?
The cancer in my case is still non-invasive (T1 high grade), scans show no cancer anywhere else in my body, and so if the bladder is removed now I have aever smoked long term survival rate of over 80%+.
I'm 65 in great health, never smoked but was exposed to heavy aromatic amines due to being a yacht painter (two-part epoxy coatings) and repair for 47 years.
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