Notes from first meeting with the surgeon

Debi and I had our first meeting with the surgeon who will be doing my cystectomy (removal of the bladder). We both came away feeling much better - or more confident - that we can beat the cancer and that living without a real bladder (and prostate, etc) won't be all that bad.

I had a few pages of questions and he actually answered most of them before I even asked. He's a young doctor (Debi says he looks more like a rock star) and he exudes both confidence and competence. He has done a ton of these (a couple per month) and carefully went over the procedure, available options, chance of success (and what they do to insure/verify success) and what to expect for recovery and quality of life. He spent a lot of time on how the new system will work, and what problems others have had before me - and what they did to deal with it.

Before we schedule the surgery he said that recent studies have shown taking a 3-month course of chemo before the operation has had some positive results in reducing re-currence of the cancer after the operation. He set up an appointment for us for this Friday with an Onocologist to discus whether it would be a good idea in my case.

The other decision I need to make is what sort of replacement I want for the bladder function. Either:

1. an Ileal Conduit which takes a small piece of my small intestine and forms a tube that connects the kidneys to a stoma in my stomach wall. This requires wearing a pouch on the stomach.
2. a neo-bladder which uses a couple feet of my small intestine to form an internal reservoir that is hooked up to all the current plumbing.

There are pro's and con's for both. The first requires one to wear a pouch all the time. The second has some problems for some people with leakage. I'm leaning towards keeping the current plumbing. It'll take some getting used to but I'm pretty good at making things work.
Other things:

1. He makes a 4" incision from the belly button down (some cut that and continue around the belly button an inch or so higher. (His specialty is minimal invasive surgury.) Some have started to use robotic surgery but that only works for removal

2. He uses a nerve sparing technique in which he carefully moves the nerves that control the mechanism of erections out of the way when they remove the prostate. This helps retain this function in the majority of men.

3. He will take the small lymph nodes next to the bladder. I asked if I'd miss these and he said there are millions in the body and these are just two small ones. They send these to be analised for presence of cancer cells. If the cancer has made it out of the bladder these are the first place it would show up.

4. So how do you pee with this new bladder. It doesn't have muscles like the old one so it cannot expel the urine without help from outside. So you sit down and relax your pelvis muscles while pressing down and in - with your arm - just above the pelvis. This forces the urine out of the new bladder. No more standing up to pee - but there are a lot of people who have dealt with this problem for a long time (eg. women ) so I'm not too worried.

5. Time: the actual surgery will take between 3 hrs (for the ileal conduit) to 6 hours for the neo-bladder. Up to 5 days hospital stay to make sure the intestine wakes up and there are no problems with the new bladder. Full recovery can take up to 6 weeks - but it's usually faster.

6. follow up chemo or radiation depends on what they find in the tissue samples from the different organs removed.

Meanwhile I can do anything I want - physically. So I've signed up for a tournament this weekend to ump a couple games. Feels good.