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Urinary diversion – Indiana pouch or studies for NMIBC
Does anyone have experience with an Indiana Pouch?
18 months ago I was diagnosed with Cis T1a. I had two rounds of 6 BCG treatments and still I have CIS.
I just returned from USC where I was in the Instilladrin trial (interferon with the incipient syn 3). I failed that clinical trial having my 1st biopsy still showing CIS.
My Oncologist says I could try another clinical trial or have an RC (soon – 4 to 8 weeks) and that I am a good candidate for an Indiana Pouch.Does anyone have good outcomes from a clinical trial for NMIBC?
I wondering about Atezolizumab in Treating Patients With Recurrent BCG-Unresponsive NMIBC and/or the Quilt 3.032 studies or anything else for NMIBC that might work to kick CIS.
thank you! -
8 Replies
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Sara Anne, the Doctor @ OHSU who does Indiana Pouch RC’s is Dr Sajadi. He specializes in women’s health – female pelvic medicine and reconstruction, neurourology, and non-neurogenic voiding dysfunction. I’m going to attempt to get an appointment with him to discuss my future. Dr Amling @ OHSU has been my urologist/oncologist in the past.
Thanks Jack for your input. Sorry you are continuing to have to contend with CIS. Dr Daneshmand said the monoclonal antibody treatments don’t seem to work yet on NMIBC/CIS – the studies are those with mab at the end of their names. I have my medicare card and supplemental in place. I currently have exceptional coverage which will transition to medicare on Oct 1. Thanks for the outline of interferon charges – i’m not sure if I’ll try that or not.
Best to you brother. -
David
At 3 months short of 65, it is time NOW to apply for medicare – I hope you are eligible.
I have had CIS for a bit over 3 years, on and off, always stage 0. It gets knocked down, then it comes back. My third induction of BCG (6 treatments) were with interferon and i had better temporary results, but the CIS did return.
I am not a good candidate for an RC, thus continuing to try different treatments makes sense for me. For others, the smart choice may be choosing to go the RC route before the cancer hits the invasive point. None of us wants to hear that our cancer is now invasive. At 3 years I am still CIS stage 0 bladder cancer, looking for a cure for CIS.
A bit more on medicare and cancer treatment. For one dose of BCG plus Interferon I am billed $3625.00. The actual total payment by medicare and my secondary is $1550.00 (rounded), with the secondary picking up about $ 310.00 of that total.
You can talk to medicare and find out what they pay in your area; my understanding is that there is not a national payment schedule. You can explain to your doctor that you will be on medicare in 3 months, and ask if it is safe to wait, or, can s/he offer you a discount to the medicare price now, IF you choose to pay out of pocket ?
Bladder cancer is considered among the most expensive to treat because it does come back and treatments can continue for years. I have found that to be all too true.
Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Hello neighbor I live in Portland and now Cynthia knows that there are at least two people who live in Oregon ?
Dr Daneshmand is very highly regarded. He was recruited to USC from OREGON and my urologist was one of his residents. Btw, I would interested in knowing who at OHSU does Indiana pouches.
I don’t think you would make a mistake with anyone at USC.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thank you Sara.Anne and Cynthia,
My name is David by the way and I live in Eugene, Oregon. I will be 65 in three months. I went to USC for a trial with interferon with an incipient syn 3 and was kicked out after the 1st biopsy because I still have CIS. I did get advise from two top oncologists at USC – Dr. Daneshmand is on the Bcan advisory board and Anne Schuckman is highly regarded. One piece of advise was to have an Indiana Pouch (IP) which is not done in Seattle and only one Doctor does IP at Oregon Health Sciences University in Portland (a NIH designated cancer center.) I have calls out to my urologist in Eugene and to the doc in Portland. Perhaps I will investigate some of those centers that Cynthia recommended & compare them to USC.
I’m still amazed that I have this early stage cancer (CIS HG – it’s only in a few spots in my bladder) and I’m advised to have this major surgery to get rid of it. Yes, I know there’s a treatment gap for NMIBC. I’m now coming to grips with this surgical eventuality because I see no studies that work and all my Docs say get rid of it before it spreads.
I hear of people having good success using interferon with their second round of BCG – I did not do that and wonder if I should pay for at least 4 weeks of that to see if that might work. I know it’s expensive – insurance will not pay. Thanks for being there all of you folks – I really appreciate it! David
Ok, i am going to give Cynthia a bit of a hard time here. She lives on the East Coast (well close to it for the point of my argument). She has given you a list of great places to consider for a radical cystectomy however it would be a long walk from the LA area . Since you mentioned that you have been talking to people at USC I assume that you’re in California.
My first choice would definitely be USC and I would certainly also seriously consider Stanford . I don’t think you would go wrong with either of these choices . I have also known Cynthia for a long time and have watched her deal with her Indiana pouch and I would agree that that is an excellent choice It will be mine if it ever comes to that.
Just a word about NCI designated cancer centers These places provide expertise in multiple areas of cancer treatment and may or may not be the best in a specific location for bladder cancer They certainly would be on my first list to consider but I would also take into account the reputation that the urology department has
Wishing you all the best. You are approaching this in a thorough and reasoned way.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
When I knew that I had to have a Radical Cystectomy I already knew I wanted an Indiana Pouch, I also had had a boat load of pelvic radiation. The general idea is keep it simple so most did not offer anything besides ileal conduit. I was already knee deep in blc advocacy and already knew where to find the expertise and volume I was looking for. I was having treatment at Massachusetts General Hospital and the at the time preferred as an institution towards I C. I had a second opinion at Johns Hopkins and a third at University of Chicago Hospital. Gary Steinberg at UCH did my surgery I have an umbilical Indiana. And all these years later I have never regretted the decision. Wow that looks simple condensed to a paragraph doesn’t it? Bottom line? Volume is a good indicator in both the Hospital and the surgeon you chose. And yes NCI is a good indicator as is a teaching institution. Some people feel they need to go to centers of excellence and others find very competent surgeon’s closer to home both are right.
Centers of excellence my short list it’s time for bed so others will chime in or I will add more tomorrow.
Sloan Kettering
MD Anderson
Vanderbilt
University of Chicago Medical Center
Hopkins
There are pros and cons with all the diversions as well as a learning curve and thier own frustrations at times. But the good news is that we learn to adapt in ways that allow us to get back to normal.
Ask questions if you like that’s how we share knowlege.
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
Thank you Cynthia for your insight. Yes, getting the right surgeon. Dr Schuckman, a USC oncologyst, is suggesting an Indiana Pouch for me. I should ask her how many Indiana pouches she’s done. A man I spoke with who had a neobladder, had robotic surgery and has very little scaring externally and another person I saw on a video had a Indiana Pouch that was robotic and orthoscopic.
Has anyone had experience with The City of Hope cancer center, they are a NIH designated cancer center. How about other places or doctors that do Indiana Pouches.
I’m looking for the best operation and a well functioning pouch with the a small amount of scarring, as I’m a lap swimmer and kayaker and pretty active.
My Indiana is 12 years old and serves me well. I also had CIS and nothing worked I even grew tumors during BCG. CIS if aggressive can get out of hand, I also tried a clinical trial by the time my diversion was done it had spread to my urethra and it had to be removed. As with any urinary diversion the road to success is making sure that the surgeon doing it does a high volume of the diversion they are doing for you. The first surgeon I talked to was local and did only 4 or 5 diversions a year and they were all bags. The one that did mine did 4 to 5 a week and did all three diversions.
I can honestly say that my diversion has not slowed me down or changed my life in any substantial way. Please ask questions if you have them and we will try to answer them.
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
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