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Needing a surgeon for RC
After receiving a second opinon from a surgeon at the Rochester Mayo in Mn, I have decided to have an RC due to 4 recurrences of high grade tumors. 1 being T1G3. The problem is this surgeon does not recommend or perform an Indiana pouch. He is recommending a neobladder. I’m 44 and am not sure I am ready to deal with a lifetime of leaking problems. I am located in Nebraska and have an appointment with our local urologist tomorrow for his thoughts, but am worried about using the local urologist. Does anyone know a good surgeon in my area or even at the Rochester Mayo that performs the indiana pouch? Or am I worrying about too much about the neobladder?
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21 Replies
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Jillo,
One thing the statistics that you will be looking at don’t take into account is the skill of the surgeon. You will see many of us on this site pushing hard to get people to go to the top surgeons at the top hospitals.
Our reason for that is that those surgeons do the surgeries day in and day out and have more experience. If you are going to a top surgeon and you are only 44, then your chances of complications are much lower.
Along the same line, you don’t want to be first person that your surgeon does using the DaVinci robot. If they have done 1000 surgeries but only a few with DaVinci, you want them not to use Davinci. If they’ve done hundreds with the DaVinci, then they have probably developed the necessary skills to be highly proficient with it.
Just something to consider….
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Jillo…i will quote my surgeon Dr. Inderbir Gill…well no i won’t as i can’t remember his exact words…but more to the point…..I have a navel stoma…looks just like my belly button and in the same place…he explained to me that the skin is less likely to try to heal in that location than if the stoma is put elsewhere on the abdomen. The body thinks its a cut and tries to heal when on the abdomen. But not everyone has that problem so i don’t know if its the skill of the surgeon or a persons particular physiology?? I’ve never had a problem with the navel stoma. In fact it looks so natural you wouldn’t know i had an Indiana ..i always carry papers with me just in case something would happen to me and i couldn’t tell them. As far as ileus goes…that happens but rarely does it require another surgery..it clears up on its own. And it doesn’t happen to everyone.
I think Gracie is right…talk to Konety and then make your decision. You’re very young and you’ll adapt very quickly to whatever you choose and you’ll heal much quicker than the average person who has bladder cancer and a diversion. Statistics take into account all the ages…and most of them are over 60 so when reading stats take that into consideration.
Pat
Jillo, Dr. Konety is an amazing doctor – he is the head of the Urology Dept there.
I believe we all adapt to whatever diversion we pick. And you will too. The cathing procedure for the Indy is not sterile but you do need to have it clean. I’m 2 years out and I only get up once during the night. I do not have any leakage and do not have to sleep with any pads or diapers. I have not had issues with scar tissue, obstructions as you mentioned – althought these may occur.
I believe there may be some issues with any diversion and this is a really big decision for you.
I highly recommend the Indy to women needing surgery. Maybe a visit to Minnesota would provide some answers for you.
Gracie
Oops, that was a typo. Missed that last “a” in Indiana. I am 44. I know it’s a big decision to make. I’m a bit on the lazy side when it comes to taking care of myself. I like things quick and simple. Which worries me about the Indiana pouch because I know it takes devotion and I hate losing sleep. I’ve read about the problems with scar tissue on the stoma and trouble with obstructions. Are these complications common?
Indiana..Jillo…not Indian!! Now you sound like most of the nurses i run into here who have never heard of it. Its called the Indiana pouch because it was invented at Indiana University so obviously they do it!!
Its great that Konety is at least where we can find him now..i lost track of him after he left UCSF..Thanks Gracie for that info.
I don’t know how young you are Jillo but ya gotta train whatever you get. Surgery just a bit more extensive with the neo and Indiana…..but hey i was sitting up and putting curlers in my hair by day 3…..was sore but bearable. Training the Indiana just left me a bit sleep deprived until i got it to 4 hrs which took 4 weeks..and watching my input of fluids at night let me extend to 6 then to 8 hrs of uninterupted sleep. Now i don’t even think about it..i actually think its in a better place than it was…my girlfriends all have to wear light pads because they leak whenever they laugh too much or sneeze!!..No problem for me!
It also has a valve which prevents back up into the kidneys..thats a real plus. I’ve never had an infection. But then i had a #1 TOP SURGEON who knew how to do it right.
Whatever you decide you will figure out and it will be second nature in a short while. I had a horrible time making the decision but was vain enough to not want to mess with an outside bag..but thats me……I knew i didn’t want the neo after i read the success rates with females..if i had to cath it wasn’t going to be in an inaccesible place..again thats just me.
pat
Thank you Gracie and Pat. I actually found the email address for Dr. O’donnell on a post from about a year ago. I sent him and email and he already responded. He confirmed that he does perform the Indiana although it’s the least performed out of the 3. I’m also happy to hear about Dr. Konety at the U of M. That’s my hometown and still have all of my family there so that might be a great option. Now if I can only make up my mind between the Ileal Conduit and the Indian pouch.
Thanks Gracie..i felt sure he did and sent off an email to him..they really need to educate who answers the phone a bit better don’t ya think? I usually ask for the doctors nurse if i really want to find something out!!
pat
I haven’t had an opportunity to look in lately – in the midst of selling home, moving. Saw your post. I also have an Indiana pouch. Before my surgery I went for second opinions – Dr. O’donnell was one of them (loved Iowa in November!). He advised me to get the Indiana pouch – so I know he does them.
You may want to speak to some one other then the receptionist. Dr. O’Donnell has an exceptional reputation.
I ultimately had my surgery done @ UCSF with Dr. Konety. Amazing surgeon. He did a fantastic job. He is no longer with UCSF but is with the University of Minnesota.
I wish you the very best – you’ve got great mentors on this site.
Gracie
OK…i’m looking into that one for you.
In Chicago ..the best is at the U. of Chicago..Dr. Gary Steinberg..i know he does the Indiana..he did Cynthias…..
http://www.ucurology.org/faculty/gary-d-steinberg-md-facs
Now the birthplace of the Indiana Pouch and if anyone there tells you they don’t know what it is should be fired is IU Medical Center in Indianapolis, Indiana..part of the Clarion system..Dr. Richard Bihrle
http://www.clarian.org/portal/Clarian/findadoctor?paf_gear_id=4700021&paf_dm=full&paf_gm=content&task_name=displayBio&contactId=474
AS for finding someone to follow up..what i did as noone knows what the heck an Indiana is around here…is call all the hospitals in the area and talked to the stoma nurses and ask them which uro’s at least know what it is. I found one group who agreed to follow up with me. I went in the beginning for them just to check me out…and now only to do the occasional urine test or they remind me to have my Bl2 checked. All my CT scans and blood work up or chest x-rays done at the local hospital and sent to both my original surgeon and the current uro’s.
Pat
Well, I called the University of Iowa where Dr. O’donnell is to see if he does the Indiana, and the receptionist didn’t know what the Indiana was. When I explained it, she said he did the Neobladder. So, I’ve thought about maybe looking at Chicago. Any suggestions on a dr there? Also, what happens with after care or emergencies if no one within 9 hours of me knows how to do the Indiana?
Don’t rule out the ilial conduit if you are concerned with leaking and self-cathing. Of course, there is maintenance involved with the bag. I change my pouch every 4 days. I empty my nightbag once a day. That’s about it other than the occasional unexpected leak. Different strokes for different folks I guess. I didn’t want to risk an outcome I couldn’t handle. Best of luck.
BC diagnosed 01/2007
Cystoscopes and Miomyacin in 2007
R/C ilial conduit 04/27/2008Jillo…yep one of the best is at the U of Iowa..Michael O’Donnell
http://www.uihealthcare.com/depts/med/urology/urologymds/odonnell.htmlIts kind of interesting jillo..but some of the best places for men to go is not the best for females to go…imagine not doing an Indiana at a hugh place like Mayo.??? HUH…
When i was diagnosed with invasive T2a bladder cancer i made sure i went to the top doc in uro/surgery at MSK in NYC. He got all the tumor and margins the local uro missed. He also did NOT in no uncertain terms want to do an Indiana. I had done my research and i knew what i wanted. What he did for me was buy me time to research who did do the Indiana and who did it well. Mayo was not on my list. Indiana was, U. of Chicago was, USC/Norris was…actually there is one surgeon at MSK ..a female Dr. Donat at MSK who does them. U. of Penn does them….. I don’t understand their predjudice on doing the Indiana..its wierd..its also harder to do than the neo. I’ve had mine for almost 8 yrs…some early training some early complications but no more than the neo.
I truthfully do not know if O’Donnell does the Indiana but i do know he’s one of the top uro/surgeons in the US…you could phone and ask..
pat
Thanks Pat on the suggestions. It would be very hard to travel so far away. Are there any surgeons closer, say in Kansas City or Iowa?
Jillo,
I will add that when I was looking at which diversion to choose, I talked to a wonderful doctor who did neo’s for both guys and gals and he told me I could expect to cath if I got a neo…talked to a couple of his female patients and they both were cathing on a regular basis. They probably didn’t know about the Indy and felt the neo was better than the bag.
In regard to the after effects of an RC…
I’m thinking for women, that no matter what the diversion, sex is less than it was prior to surgery. I had a hysto. in my late 30’s but sex was still OK until I had the RC at age 57; they took the ovaries and that pushed my menopause into overdrive; intercourse is still doable but not pleasant due to the extreme dryness, etc. Still there are other ways to express pleasure so we enjoy what we can.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Hello Jillo,
I was 38 when I had my Radical Cystectomy. I was briefly told about an Indiana, but was told that due to my age I should opt for something more successful the neo-bladder. Being a young vain women I opted for the neo-bladder because I wanted to be normal after.
I am one of the 30% of women that is incontinent after a neo-bladder. I am 2 years out from surgery and despite all the exercises my incontinence is worse. I am in diapers at night and most of the day.
I have talked to many women that had great success with their neo-bladder and I am happy for them. If I had to do it over again I would opt for the Indiana.
Most doctors are concerned with the here and now and do not have to live in your future. This is the time to ask them about the quality of life issues. How many women have they performed surgery on? What complications are there with the diversion? What are the affects the surgery will have on your sex life? Being male they do not think of these things. Public restrooms are an absolute nightmare for me. I would much rather be able to stand and catheterize. I have changed wardrobe styles to hide the bulk of diapers. Intimacy is still the most difficult hurdle for me and my husband.
I do not want to scare you, I just wanted to give you insight from a neo that does not work as advertised. Whatever your decision the people here are always ready to help and listen.
Wishing you the best,
Webs
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