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Radical Cystectomy--experiences & good doctors DC?

8 years 7 months ago #39506 by Cynthia
You are close to one of the best in the world Mark P. Schoenberg, M.D. of John Hopkins. Besides being the best he is a really nice guy to deal with. I would check with my insurance and give him a call they are usually very good to get someone in quickly. John Hopkins is one of the top places in the US for bladder cancer so they do a large volume of radical cystectomies and that is important also.

http://urology.jhu.edu/markschoenberg/

Mike did a very good job talking about the whole process and I am sure that others will chime in. I am sorry you need to be here but welcome to the community and remember we are here for you every step of the way.

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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8 years 7 months ago #39504 by mmc
B,

Glad you found us!!! There are quite a few of us that have had cystectomies here. If you are at stage III, they will likely want to do chemo either before or after the cystectomy.

Stage 2 is invaded the muscle wall. Stage 3 is through the muscle wall into outer fat layer. Here is a really good site for explanation of stage/grade Stage and Grade

Get yourself to a top doc as fast as possible. MSK is one of the best in your area. Pat will hopefully be online soon. She is the best one with keeping track of the top surgeons in the country. She can give names. You asked the right question because having one of the top docs that does these surgeries like an assembly line is one of the most important factors in the best outcomes. Stage 3 is clearly not something to mess around with, as I'm sure you've already figured out. You NEED a top doc!!!

The surgery is hard. If you get a neobladder (that's what I have) it's about 6-7 hours. It's major, major surgery. Average is to be out of the hospital in 6-7 days. I had complications and was in for 12 days. Some get out in 5 days. It all depends on the skill of the surgeon and the speed that your intestines wake back up.

Ask about epidural. Morphine and other pain meds given make it take longer for the intestines to wake up. Some people are more sensitive than others in that regard.

After surgery, walk! Have somebody come make you walk because you won't want to and you won't think you are ready to. Walking in place next to your bed is probably the best you will be able to do the day after surgery. Walking helps wake up the intestines, is good for the circulation, etc. At least three times a day starting the day after. Day 2, get out into the hall and by day 3 be walking up and down the halls as much as you can but at least three times a day.

Erectile dysfunction is kind of the least of your worries right now but they can do nerve sparing surgery when they take the prostate. You do want that. That's also the reason to get top surgeon. With nerve sparing, erections often come back. Takes anywhere from a month or so to a couple years. It varies. There are things (pump, pills, shots) that you can use in the interim until things get back to normal. If they don't get back to normal there are other things that can be done for long term. First priority though is to get rid of the cancer and not be dead. Dead guys tend to not have very good erections so first, focus on not being dead. Then erections. :)

I don't mean to be flippant about the subject but in a few years (I'm 3 years past my RC in a few days) you will also realize why I put the first priority where I did.

It can take up to 6 months to be "fully" recovered. This really takes a lot out of you. I was back to work a couple of weeks after getting out of the hospital but I'm a consultant and can work (and did at the time) work from home. At first, just a few hours or so a day and then built back up for full time plus. It was a month and half before I was flying to clients again and one needs to be very careful with that because of lifting things. Should NOT lift anything over you head for a while after surgery. I got LOTS of incisional hernias that required follow up repair by a general surgeon. I just always seemed to think I could do more than I should have been.

There is an urgency but there is time to get to the right surgeon. At stage 3, I'm guessing you will be expedited through the process. First TURB is often under-staged. I hope that is not the case for you but you do need to be aware of that.

Did you mean "young life" or "young wife"? Not sure what you meant there.

More will chime in soon I'm sure. Ask any specific questions you want. We're here to help and to share what we went through and what we know. Don't want to bombard you with too much at once though. Tell us what you need and we'll work with you a step at a time.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 7 months ago #39499 by leica
Yesterday I was diagnosed with invasive bladder cancer (stage 3--has invaded the muscle wall), and have been told that the best option is radical cystecotmy. I am a 53 year old male, very fit and active, never been in the hospital a day in my life. This came out of nowhere. I have a very young life. I'm trying to get any feedback I can from anyone who has had this surgery done, what the real experience with the surgery is, the aftermath, the erectile disfunction etc (they want to take the prostate as well even though it's not been affected). I'm also looking for recommendations on a kick ass doctor somewhere around washington DC--very adept at what he does. I'm leaning to the neo bladder, as I'd like to keep my life as much the same as possible. Any thoughts from anyone with this experience? I'll take any info on personal experience that I can get. This has all come on fast and hard, and I'm trying to make sense of it all. I feel that there's an urgency, but want to make the right decisions.

Thanks for listening.

B

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