Cystectomy Decision Hell!

17 years 7 months ago #1123 by wendy
Replied by wendy on topic Cystectomy Decision Hell!
Hi Tim,

When I read your story I became amazed that you have lasted 14 years with such stress and worry. I wonder if having your bladder out wouldn't be a relief...after all, it stays a diseased organ no matter what you throw at it; the long term effects of years of treatments and TURs take a big toll on a person.

I sympathise with all your concerns, the worry of waking up with the bag, the headaches that will come with overseas travel, wondering about emigration/immigration to be with your loved one. It's a lot to deal with. But I do think you're wise to begin considering cystectomy as a realistic endpoint. CIS is dangerous, you're too young to die from this disease and it would be a crime if you did.

Lots of folks put their heads together and came up with this 'survival guide' for those who have had an Indiana pouch, but many of the info could be applied to cystectomy in general.
blcwebcafe.org/posthospitalsurvivalguide.asp

Keep asking questions. And please keep us posted.
Wendy

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17 years 7 months ago #1120 by timb
Cystectomy Decision Hell! was created by timb
Ive been treated for BC for 14 years or so now. Had countless TURBTs, Mitomycin, BCG etc. I think I've probably had around 30 or 40 tumours fom grade 1 to (recently) grade3 with cis. All Ta. I've been on BCG for the last 18 months and in that time have still managed to have 2 cis recurrences, albeit very small,and a single papillary grade 2 tumour. Still Ta.

My consultant and his team, though they won't actually say specifically, would probably favour cystectomy and some form of diversion. I'm 43 years old and a good candidate for this kind of surgery. I've met and spoken with a small number of recipients of this surgery and am convinced that there's now a very good quality of life beyond this treatment. Recently I met with someone who'd had this surgery and they were in excellent health, albeit with a few "tweaking" issues. My surgeon, I would add, is excellent with a very good reputation for this type of surgery. It's still an incredibly hard decision. Im currently deliberating on whether or not to bother with another maintenance BCG or whether to bite the bullet and go on a big holiday and RC when I get back and have had time to get my world in order. It's decision hell! I think once i'm there with a decision i'll feel a lot better. I'm also aware that, statistically, the RC has a better cure rate the earlier it's done. Am I waiting for the disease to get so bad that I HAVE to do it rather than being proactive? My head is going with the RC but my heart is still trying to catch up. One of my many fears is that they will operate, discover a previously silent bowel condition that limits the diversion options, i wake up with a bag. And I put myself there. I know I'd get used to it, but it would take a while. Anyone else at this decision point or have any pearls of wisdom on any aspect of decision point?

In addition, because my partner lives in australia, I am worried that this will limit my travel opportunities in future. Ultimately we plan to live together but we have to obviously jump through immigration and insurance hoops first. Anyone have any experiences of this also?

Diversions; if i go the surgery route i'm tending at the moment towards the internal pouch that you catheterise (instead of the neo bladder) because of the control aspect and, from many things i've read, the wetness part may be better. Any ideas?

I've read way too much now and feel maybe i'm at a stage where i'm just looking for statistics that I like the sound of!!!!

This forum is excellent by the way.

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