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Potential cystectomy with Indiana Pouch
I was diagnosed In February 2015 with high grade invasive bladder cancer , with a very large tumor. had 2 bladder resections and they weren’t able to get it all. Prior to chemo, my surgeon recommended a complete cystectomy with an Indiana Pouch because of size and placement of tumor. Did 4 rounds of chemo with Gemzar and Cisplatin . Had a very positive response. Scans showed that there was no cancer in other organs and none in lymph nodes. Tumor in bladder was much smaller.I am meeting with my URO surgeon in mid September to get his surgical recommendations. My medical oncologist has suggested that he thinks the recommendation for surgery will remain the same, to ensure that this doesn’t return. he thinks because of size, type and placement of the tumor, and my positive response to chemo that a complete cystectomy is the best way of insuring a complete recovery.
I am preparing myself for this and would like to hear from others who have had a complete cystectomy with an Indiana Pouch. I have read all the medical info, but really want to hear from people about their own experiences. Thanks in advance. Lucky I found this website yesterday!
PLK in NJ11 Replies-
Joe,
You are welcome of course. Just a uggestion, think about going to RWJ in New Brunswick for a few reasons. They do this surgery a lot there and all the nurses and staff nderstand it and follow a specific protocol. People in my local hospital were not aware of it and I needed to advise them at times, which was a bit hard. Also, RWJ New Brunswick is the National Cancer Institute designated hospital in the state, and my ater surgical care was outstanding! My cousin the oncologist was pretty adamant at my going to a NCI hospital for surgery through she did say that some interesting clinical trials go on elsewhere. This is just my thoughts after my experience. You want a place that has done lots of these surgeries and knows how to care for you.
Sending you good thoughts for the future.
Paula
PLK in NJ
Paula,
Thanks so much for sharing your experience with Dr. Weiss. My urologist is also RWJ affiliated out of their Somerville Medical Center. I will be sure to speak with Dr. Weiss as the strategy develops.
Thank you again,
Joe
45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!
Hi Joe,
My recovery has gone well and I highly recommend my doctor. It is Robert WEiss at the Cancer Institute of NJ at Robert Wood Johnson Hospital in New Brunswick NJ. If he is not taking new patients ( he is planning on moving his practice at some point), consider any of the docs in that group. My cousin is a noted oncologist (not in bladder cancer) and she vetted all those docs for me. the phone number to contact him is 732-235-2465.
I have had a few bumps in the road in recovery, butmy doc and his nurse were always there for me. I am doing well and am back to work and moving on with my life. Doing all the things I used to do. I wish the same for you. Good luck and stay in touch!
Paula
PLK in NJ
Hi, PLK,
I hope your recovery has gone well since your last post! You mention that your surgery was done in NJ. Would you mind sharing the doctor and facility information with me? I am faced with RC very soon and wouldn’t mind speaking with a doctor that has a lot of experience with the IP surgery. I will find out next week if that type of diversion is suitable for me. I too live in NJ. Thanks in advance and hope you are well!
Joe
45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!
I am now 2 weeks post surgery with a radical cystectomy and an Indiana pouch.still very tired, and having much gas, though bowels are fairly regular. I have 2 out of 4 tubes out, and expect to get one more tube out next week. i also expect to learn to self cath next week. Any suggestions of what I can expect for the rest of my recovery?
plk
PLK in NJ
PLK, I’m so glad to read that you are doing well. I’m sure that you are relieved to have the surgery behind you. I hope that you have a smooth and speedy recovery.
5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes – all NED. Now at scope 1x year.
Well it has been 10 days since my radical cystectomy with the Indiana pouch. Recovery has been smooth with relatively no pain and I am in rehab now trying to get stronger. I finally feel positive that this will all work out and I will be cancer free in the future. Still waiting on the pathology report, but the surgeon was very positive.
Right now just dealing with a lot of gas and stomach discomfort. but stay tuned for more questions to come up. Anything I should be aware of?
Plk
PLK in NJ
Thank you, Lelly, Cynthia, Sara Anne, this website has been a godsend to me! Much more helpful than the former patient my surgeon recommended I talk to. She was all doom and gloom. I know see a future that can be positive after the surgery and recovery that is. I am 63 year old woman who is fortunate to be on how young active side. I have my surgery scheduled for Oct. 5 and it wil be a radical cystectomy with an Indiana pouch, probably stoma at my belly button.
I have had several other surgeries and am very nervous about the surgery, and recovery. I am having it done in New Jersey, with a doc who has lots of experience wih this surgery, but would welcome any suggestions about recovery and immediate after surgery.
Again, thank you for all your support. you are providing an invaluable service!
PLK
PLK in NJ
PLK,
I haven’t been on the website in a while, but saw this topic and thought my response could be helpful. Cynthia’s information was invaluable as I was trying to make up my mind regarding the diversion options.
I ended up going with the Indiana Pouch and am so thankful I did. Following the surgery, I had to carry my urine around in an external bag for a few weeks and absolutely hated it. I love that if I didn’t tell you, you would have no idea that I pee out of my belly button. I can wear most of my old clothes (except the ones that were too big after losing 20 lbs and those that rub right on my stoma), and other than my scar from surgery, someone could look at my abdomen and not even notice that I have a stoma in my belly button. Cathing is easy to do and becomes easier all the time. At first, I would sit to cath, but now I’m comfortable standing up and I’m getting it done faster than before.
There are a few downsides to having a pouch, but they don’t outweigh the positives. I had my surgery in NYC, but live in Western NY. Doctors around here don’t have much experience with Indiana Pouches. This has been a problem. My urologist here told me that he does two IP to every eight Illeal Conduits. When I was hospitalized with a fever recently, (not at the hospital my urologist works out of – but the hospital at which I was receiving chemo) I learned how little is understood. Some pretty scary errors were made in my care. I’ve since decided that my connection to my physicians in NYC are going to have to be my main resource despite the long travel to get there.
Occasionally, I leak from my stoma, but only when my pouch is too full. This mostly occurs at night when I don’t wake up on my own to cath. (I’m past the point of setting my alarm.) I sleep with a rubber bed protector under my bottom sheet that I bought at Target in the baby section. This only happens about once every two weeks.
I wish you well with your decision. It’s a tough one, but hopefully, as you research more the diversion that fits your needs will become apparent.
Good luck!!!!
Lelly
Cynthia just recently posted an excellent summary on the Forum under the category “Women and Bladder Cancer.”
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
I see that you have read some past posts that cover a lot but let us know as questions come to mind and they will.
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 SocietySign In to reply.
