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Peter,

Whatever our tone or apparent degree of control, we're all venting, here. And we're all sympathizing deeply with each other, I suspect, and are glad you told us your story, so we can help share it. Please become a regular visitor, view some of the other stories and discussions, and sign up for the email list-serve, also. You will find that it helps.

Jim

Peter,

I'm not sure what grade/stage your tumor was?  It sounds like it was high grade (grade 3/3) and invasive? T2+?
If the doctor is recommending you get your bladder/prostate removed for a "superficial" high grade stage Ta or stage T1 tumor, make sure you get a second opinion.   Some doctors are surgery happy with grade 3 superficial tumors, others are more focused on sparing the bladder (albeit with possibly higher overall risk).

For an invasive (Stage T2, T3, or T4) tumor it is pretty important to get it taken care of right away.  There are alternatives to removal of the bladder/prostate, in some rare cases they only have to remove part of your bladder (partial cystectomy), there are other methods of sparing the bladder/prostate with radiation/chemotherapy, though these methods typically carry a bit more risk.

If you are going forward with removing the bladder, be aware that they typically remove the prostate as well.  There is a surgical technique called "nerve sparing" that while the prostate is removed, the nerves that control your erections are spared.  If you do not have this done you will be impotent and require either a penile prostesis or needle injections in order to have an erection in the future.  I'm not sure "nerve sparing" always works as intended, but its your best chance at maintaining your sex life.

Your really young (like me) to have this disease and it sounds like things are rushing pretty fast for you right now.  Make sure you address these issues now, get a second opinion!  Make sure you know your following the correct course, because there is no going back after July 18th.

Please read "Roger Barton's" Tale from the trenches on this website, he was 35 when he had a cystectomy for bladder cancer

http://blcwebcafe.org/stories/young_rb.asp

Mike Mann had muscle invasive bladder cancer (I believe T2G3) seven years ago and went for bladder sparing, read his story as well;

http://blcwebcafe.org/stories/mmann.asp

Good luck!  

Why are they going straigt to removing the bladder.  My husband has a highly aggressive type of cancer also.  First they removed the tumor, but didn't think that they got it all so they removed a section of his bladder.  Tomorrow is his last day of chemo, he has been having chemo since April.

Have you talked to the doctor about trying to save your bladder?

I'm 50 years old and had my bladder removed 2 years ago. Very scared and depressed at the time. Some things will change, and it takes time to recover. But I'm still here, working, still married etc. My advice is to talk with the surgeon about sparing nerves and concider what kind of reservoir you willl have. But be patient after the surgery. Your sexual life will return after some time, it can take a year or even more. And there are medicines to help you. I will be away for a week now, so I wish you good luck if you proceed with the surgery on the 18th. And we can communicate later.

Knut (living in Norway)

Hey Peter where are you?

I hope you are coping well enough with all this. Could you let us have an update if you are able please?