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Female Rad cystectomy Dilemmas No dr. no insurance

14 years 2 months ago #982 by BobinNJ
Hi Karen,
Just letting you know we will be praying for you. The post from Linda was excellent and I can't add any more to it. I can tell you that I had my neo-bladder done at MSK back in April (surgeon Dr Bernard Bochner) after 3 months of chemo there (oncologist Dr. Dean Bajorin) and it has gone extemely well. MSK is outside my insurance network, so we are stuck with some very large bills - though of course not as bad as having no insurance.
The original urologist I saw was also excellent- don't know about what insurance coverage he might accept. He works out of St. Clares hospital in Denville. Dr. Marc Colton (www.morrisurology.com)

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14 years 4 months ago #575 by LindaW
Hi, Karen,
Things must be looking very bleak to you right now, but hang in there. Hopefully, you will be able to find a hospital/surgeon that accepts medicaid. MSKCC is definitely not the only place radical cystectomy and urinary diversions operations are performed. Most major academic medical centers have surgeons that can perform a female radical cystectomy with a neobladder, and if not a neobladder, then an Indiana pouch or ileal conduit. Since the doctor that diagnosed your bladder cancer thinks you are a good candidate for a neobladder then that is what I would try for if I were you.  However, you do need to have a surgeon that has lots of experience constructing neobladders to insure good results. At the end of this post, I will give you my descriptions of all three types of urinary diversions(reconstructions).

I think your doctor would be surprised to learn that female cystectomies with neobladder reconstructions have become quite common. At first it was thought because of the shorter urethra that women could not have neobladder, but this has been disproven. Therefore, this surgery with neobladder reconstruction is now available to women at many medical centers by many doctors. Did your doctor refer you to MSKCCC  because you live in the New York City area? There is a "Provider Directory Serving: Medicaid, Family Health Plus and Child Health Plus" for New York City online but they do not yet have a specialist directory online. However, if you called the New York City Department of Health and Mental Hygiene, they might be able to provide you with the names of urologists or urosurgeons that could help you. The online directory is located at:

Also, you can  check out the financial resource page on the blcwebcafe site at:

Here are my descriptions of the three types of urinary diversions that I have modified from my previous post "Options for bladder replacement":
The general names and definitions for the three types of diversions are:

1) ileal conduit - A segment of ileum (small intestine) is used as a pipeline (conduit) to divert urine. The urine flows from the kidneys, down the ureters, through the conduit and out the stoma. The conduit is
not a reservoir for urine, meaning the urine flows continually and an external pouch must be worn to hold the urine. The output from the stoma is urine and mucus. It is sometimes referred to as an ileal loop.

2)continent cutaneous urinary reservior - An internal pouch that is made from a segment of intestine and is connected to the skin by fashioning a piece of intestine to form a tunnel between the pouch and a small opening in the skin. The opening is a nipple stoma that is made of intestine and bought to the skin, being fashioned in such a way as to allow the reservoir to remain continent. This diversion must be
catherized periodically, approx. every 4 hours, in order to void the urine. There are several different designs, but this diversion is often referred to as an Indiana pouch.

3)orthotopic neobladder - An internal pouch is made of intestine and placed in the body where the original bladder was located. The pouch is connected to the urethra to allow voiding of urine through the urethra. Voiding is accomplished by relaxing the pelvic muscles and bearing down with the abdominal muscles. It is the only urinary diversion that holds the possibility of having sterile urine post-surgery which is definitely a plus. The intestinal segment most often used for neobladders is from the ileum, it is sometimes referred to as an ileal neobladder.

Although the ileal conduit has been around the longest, it does not mean that it is the best or without possible complications. The continent diversions were developed because of the need for improvements in urinary diversions. At the present, the medical profession is listing order of preference for urinary diversion as first neobladder, next continent cutaneous pouch/stoma, and last ileal conduit. However, all these diversion are represented on the blcwebcafe e-mail discussion list, and their owners are leading active, well-adjusted lives. Because of other health concerns, sometimes an ileal conduit is the preferred diversion. However, beware of doctors that insist the ileal conduit is the only way to go because it often means the ileal conduit is the only diversion they are qualified to construct.  Doctors that do this are not giving you the information that you need to choose the diversion that would be the best for you.

The different designs for urinary diversions are often named for the person who designed it(Studer, Hautmann, Koch), place where first used (Miami, Indiana, Padovana), or the configuration of the design(Wpouch, Tpouch, Spiral, etc).

Although some people use the name neobladder to refer to any of the diversions because it means new bladder, the medical professionionals that works directly with diversions reserve the word neobladder to refer to a urinary reservoir made of intestine that is orthotopically placed in the body and connected to the urethra. Therefore, neobladder is a term used synonymously with an orthotopic urinary diversion.

The intestinal segments used for continent cutaneous reservoirs and orthotopic neobladders can be small(ileum), large(colon), or a combination of both. I have not researched if losing the one-way valve between the ileum and colon to make the continent mechanism for the Indiana pouch creates any subsequent bowel difficulties, but I would do so if I were considering it as an option. However, I do not remember any of our Indiana pouch people on the blcwebcafe e-mail discussion list complaining of intestinal problems post-surgery.

Here is a website that I found recently from the Cleveland Clinic that describes the pros and cons of the three diversions:
http://www.clevelandclinic.org/health/health-info/docs/3900/3927.asp?index=12546 &src=news

Neobladder, catherizable internal pouch, and external pouch people enable you to do all types of activities...swimming, carpentry, yardwork. All three take some extra care with neobladders that are working properly taking the least amount of additional effort. The catherizable internal pouch(Indiana pouch) probably has the fastest/easiest "learning curve." Although the Indiana pouch and the neobladder have to be stretched to hold 400-500cc of urine so that you can go around 4 hours before needing to void, learning to catherize it is probably easier than learning to control a neobladder.  With the external pouch, it often takes some trial and error learning which appliances work best for you and learning to attach them. Although you would soon have all that under control, it is probably not as easy as the internal pouch would be. The external bag does have the advantage of being able to connect it to a night drainage bag so that you can sleep through the night. With the other two diversions, you will need to get up once during the night to cath the internal pouch or just void the neobladder. It can take a while to regain continence with the neobladder, especially at night.

I hope that some of this information has been of help to you.  Please continue asking any and all questions that you have. Keep us posted on how you are doing and let us know if you are having any success at finding doctors/facilities that will accept medicaid.
Hope this helps,

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14 years 4 months ago #573 by rentanag

I know for a fact that there are more than 5 US doctors who have performed the neobladder reconstruction on women, because I had mine done in 2004 after having done much research on the subject of neobladders and women.  It's true that it hasn't been done on as many women as on men, but it happens more frequently than the doctor who spoke to you said.  It's also possible that you misunderstood exactly what it was that he said, which is something many of us who have heard the news that you heard at that time have had happen to us.
Just a note on your question about physicians who only perform the cystectomy and no reconstruction of the bladder, and that is that you must have a reconstruction of some sort because your body must rid itself of the urine your kidneys produce.  There are several types of reconstruction and the one that is done would depend on the degree to which your cancer has progressed.  That's a little further down the road right now and don't worry about that until you get more situated with a doctor who can help you, and I know there is one out there for you.  It's not as hopeless as I know you are feeling right now, I promise.
On the subject of the sort of insurance you have or don't quite have yet, I would contact the HMO on that subject and also whomever you deal with regarding your Medicaid.  Those are probably your best bets with regard to the insurance or no insurance information you need.  You might also contact your local American Cancer Society office, they might have information that might help you as well.  If you don't have any luck there let me know and I will see what I can find out through the local agency's where I live, as some of that information is the same no matter where you are.
I will keep you in my prayers, but in the mean time do me a favor and make yourself consciously take some deep breaths (stand up for this).  Do this several times a day,  it helps your lymph system to do it's job properly and it also will help you to relax.

God Bless.

Lou Graham

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14 years 4 months ago #571 by Karen
Hi. I have a question and dilemma I was hoping someone could help me with.

I'm a 40 year old female, recently diagnosed with invasive muscle wall bladder cancer. The doctor who was treating me said my best option would be to undergo a radical cystectomy with reconstruction with a neo-bladder. He explained to me that few US doctors have performed this surgery on a female, maybe 5, and referred me to a physician at Memorial Sloan Kettering who was an expert in it.

Problem is: I don't have medical insurance and have medicaid/HMO pending which Sloan Kettering does not take.

My question: does anyone know if there are more physicians out there who just perform Female radical cystectomies without reconstruction and perhaps accept HMO/Medicaid insurance.

And Does anyone happen to have any resources where people without medical insurance or pending insurance can get medical help. I have no idea of what to do, now. Seems they are going to leave me to die now.

Thanks for any help or advice.


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