Surgery options - your opinion

1 year 5 months ago #58730 by safetypro
Surgery options - your opinion was created by safetypro
I am newly-diagnosed, finishing chemo before surgery by end of 2019. I am aware of 3 options for surgery, that I am to have scheduled in March-ish of 2020. I know I cannot get a "do-over" so would like feedback from you who have had a radical cystectomy - what did you select, how long was the recovery, would you select the same surgery again if you had it to do over.

I meet with the surgeon tomorrow to begin the journey/discussion. I am most interested in "life after surgery." Any comments/sharing is appreciated. Thank you!

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1 year 5 months ago - 1 year 5 months ago #58731 by Alan
Replied by Alan on topic Surgery options - your opinion
Safetypro,

Welcome and sorry for the reason to be here. I am trusting you will get rid of this problem with the cystectomy. While I have not had to have one and thus no real advice, many have bookmarked a good summary of pro's nand con's of each. Just copy and paste. The only comment I have is most appear to accept and are happy with whatever diversion is chosen.

See: my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

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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1 year 5 months ago #58732 by safetypro
Replied by safetypro on topic Surgery options - your opinion
Thank you for such a prompt response. The pros/cons summary is helpful, indeed. It seems the external bag v Indiana pouch are my most viable options.

I’m not asking for a vote, but anyone who may wish to share the recovery process - with knowing the cons of each one - I would be grateful. I work full time and just turned 61 so I know I’ll be out of work for a bit; knowing some hurdles may be helpful in planning.

Thank you, again!

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1 year 5 months ago #58733 by Alan
Replied by Alan on topic Surgery options - your opinion
Ask away as you go. Hopefully others will chime in.

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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1 year 4 months ago #58752 by Cynthia
Replied by Cynthia on topic Surgery options - your opinion
Pro, l had an RC in ‘06, a Neobladder was not an option so I chose the Indiana. Due to the fact that my urethra was removed and I had pelvic radiation my recuperation would be different than you would expect. Even with that I can tell you that I had it done in May and was dancing a conga line at a wedding in August, maybe not for long but I had a great time. The good news is very rarely do you meet someone who had a RC years in that doesn’t think their diversion is the best choice. The bad news is they all have a learning curve, and will take time to settle in.
My Indiana gave me back a life in more ways than one due to treatment I was 50% incontinent prior to my RC so being continent again is golden. I have a stoma is hidden in my navel and about every 4hrs I insert a catheter, I can urinate sitting sitting or standing, it is painless and does not take me longer than it did before. You train it once they give you the go ahead after surgery by adding time a little at a time until you can go 4hrs between. It works for me and I would recommend it but you might want more information on the neobladder a lot of men swear by the Neo but make sure it is done by an experienced surgeon. All Urologist are trained on the bag while they are training so they may not do all diversions and if they do they do a low volume. My surgeon does 3 to 5 a week the local guy did 2 or 3 a year. I am sorry you had to join or club and let me know your questions I will do my best.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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7 months 2 weeks ago #59935 by safetypro
Replied by safetypro on topic Surgery options - your opinion
A quick follow-up. First, thank you for your responses. My surgery was mid-March, right when COVID hit.

Bladder and prostate removed, neo-bladder installed. Right after surgery, I did wonder if I made the right choice. But, within a few weeks, all the tubes were gone, staples removed, and getting accustomed to timing when I had to go vs feeling when I had to go became routine.

Everything has healed, for which I am grateful. I go every 3 hours daytime and set the alarm for every 4.5 hours at night. A bit afraid to go longer than that. I just returned home this morning from round trip cross-country flights and hotel living for a week. Feeling fine! I’m back on the bowling league/team and at work.

All that to hopefully be an encouragement to others who may be at the beginning of all of this. Next week I get my 6-month follow-up with more labs and appointments but feeling good!

Thank you for letting me share. Only one question: will I ever have sex again? I’m hoping it’s just a nerve thing from surgery and will recover over time. I’d hate to think it’s all over (LoL).

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