Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Recovery after cystectomy

Potter100
Posted by

Thanks all for comments to my recent post. I particularly found the videos of use and I’ll pass the link on to my children soon. It’s a little premature but in itself a positive thing in that I’m thinking of my future post operation. I work for myself sometimes in schools and occasionally from home. I know all recoveries are unique to the individual but in general terms when could I expect to return to work?

Crustybladder
Posted by

Hello Potter100

Well, that's a tricky question to answer other than to say, 'It depends!'

If you sail through the treatment with no complications, you might feel well enough to return after 3 months. However, the variety of 'extras' you can suffer from post surgery are likely to put you back. Recovery is always far slower than we hope for.

So in essence, I'd say it'll be at least 3 to 6 months.

CB

What if the Hokey Cokey IS what it's all about?

Potter100
Posted by

Hello CB,

yes it all “depends”. I am a fittish 61 now but I noted I was slower to recover from the resection and biopsy in February than previously. As I said in my earlier post I go in for Turbt and biopsy August 6th. If the CIS has returned at the previous grade my specialist has said that radical surgery is my best option. I’ve checked the named hospital and they have the robotic option which seems everybody’s preferred option. If my biopsy comes back negative and I have to have a cystectomy what is the time protocol with this? I reckon it will be August 20th before they confirm the biopsy outcome so how soon would they do the cystectomy given their protocols? The specialist has recommended I cancel a holiday in mid October. What do you think the time frame might be?

many thanks Potter

Crustybladder
Posted by

If your path results indicate cystectomy is your only option then assuming you are listed quickly, I'd say a holiday in October is optimistic.

I'd wait till you know the grade & stage and the treatment options including cystectomy before you do anything else. There are a number of possible variables to consider first.

CB

What if the Hokey Cokey IS what it's all about?

Teasswill
Posted by

I guess you could wait until you get the latest results before cancelling, in case it's all good news. That still gives you time to cancel if you are heading for cystectomy. Hospital waiting lists vary, also the amount of notice given. You could expect to wait a month or two but might be less. In my case they didn't give me a date at my last clinic visit, but expected it would be about 5 weeks ahead. Then about 10 days later I got offered a date with just 1 week's notice - and it was brought forward a day at the last minute!

In term of recovery, robotic seems to get people up & out of hospital sooner, but I think overall recovery about the same as open surgery. I was age 57 when I had my op with neobladder & was told 3 months off work. With no complications I certainly couldn't have gone back sooner - partly neo training, also long commute, demanding job. I had started resuming leisure activities 6 weeks post op though. I did start a phased return - one short day a week - at 3 months but was extremely fatigued. Back to all usual activities by about 6 months but another 2 months before end of the day fatigue lifted.

Potter100
Posted by

Thanks for the advice and insight into your own personal experience Teasswill.  I’ve just had my resection and biopsy date brought forward by two weeks. That’s good news in itself. I’d be happily surprised to get some good news from this biopsy.