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Working neobladders in women

12 years 4 months ago #5240 by Patricia
Hi Melodie.....well i'm a happy INdiana pouch person. My stoma is where my navel used to be...skin does not want to heal over in that location. Its no big deal once you've got it trained.....i go to the bathroom 4 times a day and sleep thru the night. And its much more sanitary in a restroom with the Indiana Pouch...no squatting or dirty toilets to deal with. My stomach is flat..no scars...its no big deal. I did a lot of research....A LOT of research on neo-bladders for women....a lot depends on the skill of the surgeon...a lot depends on whether you can do the exercises ...and the stats arent great...it only works about 33% of the time with women. MZ is a success story so far. But i also asked for names from 5 top surgeons of successful neo-bladders on women....USC/Norris gave me l3 names...of the l3...1 was working. Sloan Memorial couldn't give me any.....and so on...so it was a no-brainer for me. And i have to admit i was absolutely sure i wanted a neo-bladder. So what i'm saying is don't rule the Indiana Pouch out....do the research and if you're still committed to the neo-bladder...go for it.... Pat

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12 years 4 months ago #5239 by wendy
Hi Melodie,
I asked our email group for a Seattle surgeon who does neobladders for women and received this reply from a woman who's been there and done it:

"I consulted with the following who were highly recommended:
Dr. Paul Lange at the University of Washington Medical Center and Dr.
William Ellis are well-known. Here are links to both:
http://depts.washington.edu/uroweb/directory/bios/lange.html and
http://depts.washington.edu/uroweb/directory/bios/ellis.html .

Another surgeon is Dr. Pritchett at Virginia Mason in Seattle (who trained
with Eila Skinner at the Norris Center). Link for Dr. Pritchett is:
https://www.virginiamason.org/home/body.cfm?id=1175&action=detail&ref=405

My surgeon was Dr. Gottesman, who unfortunately is retiring from surgery."

Wendy Ramsay
Diagnosed 1994, non-invasive. CIS 2004. Neobladder 2004. Kidney and lymph
node metastasis 1/2006. Nephrectomy/chemo 2/2006.


--- >

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12 years 4 months ago #5227 by Melodie
Wendy,

Thank you for the info. and encouragement. I am learning that I am stronger than I ever thought I could be but yet I did have one day where I lost it....just went out on the deck and gave a very loud and powerful scream. I was just too frustrated and it was all I could think to do. Lucky I live away from the crowds.

It's so awesome to find a website where I can interface with those who have been there. After talking to my doctors, I asked for the names of women who I could talk with and was given three names. All three had the Indiana Pouch and seem to be happy with their decision. All are over 60 and sound like they semi-retired or retired. I am 56 and was not expecting to retire until 60, and after reading some of the personal comments about the care and maintenace involved, I just don't think the pouch idea would work well for me returing to a manufacturing environment. I have been with the same company for 26 years and need to keep my job. One man indicated he felt like he needed three hands while managing all the supplies in the restroom....sounds like a real hassle to me and we all know how clean most public restrooms are. I appreciate such frank comments as I want to know what problems are associated with each procedure.

Yes, I would like to have the name(s) of any doctors in Seattle or nearby areas that have expertise in neobladders for women. Fact is, I did have the name of one doctor from my mother-in-law, but he isn't on my insurance plan and since I can't find anyone who seems willing to give me a dollar amount, I have no idea what that surgery would cost me if I choose to go outside my insurance.

By the way, my dear mother-in-law (an absolutely amazing woman) has lived with bladder cancer for 35 years!!!...diagnosed at 52, she was told she would have to have her bladder removed....she resisted and so was treated with chemo and surgery for years and years until finally there was little remaining of the bladder and they told her finally, at age 79 that it had to go. She opted for the neobladder but almost died twice during surgery due to her age, and so they were not able to completely finish the job as they intended....they wanted her to return to surgery but she would not and so since that time has lived with wearing depends on a constant basis. She is a strong woman and never complains about her situation and feels lucky to have reached her 87th birthday this past March. How could I have a better mentor that that ???

Anyway, enough said for now....thanks for listening.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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12 years 4 months ago #5226 by Melodie
Holly,
Thank you for sharing your experiences.....I will look back on your old notes. It sounds like you were able to act more quickly than many of us. I feel lucky the doctors advised four months of chemo because if they had wanted surgery right away, I would have been completely overwhelmed. I really needed the time to make peace with the idea of surgery and as you can tell from my writings, I haven't yet been able to do that. I suppose if I were in enough pain that I would opt for anything but I hope I could be stronger. As I can see from reading comments on this site, the journey is a little different for each of us but very similiar in that it is a difficult and a very challenging process to undergo. I'm just so thankful I found this site....knowledge is power and I feel better just having additional information.
I hope things with chemo improve for you....another learning curve. Take care.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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12 years 4 months ago #5222 by mznoregrets
Melodie,

Welcome and sorry to meet you here. Reading your post I  can so relate to the shock and disbelief you are going thru. There are many people here who are compassionate, knowledgeable and supportive of all of us going thru this experience.

I was just dx'd in January, got a neobladder in March, and started chemo in last week. The details and trials i been thru are in my posts if you are interested. My cancer was in the dome and my RC and neobladder was done in Mayo's Rochester - St Mary's Hosp. by Dr Micheal Blute. I am happy with my neobladder. I am very happy with my neobladder, actually :) Considering the 2 c diff infections and the chemo diruretics I am doing - the new bladder is pretty fine lol. Just the last few days I am dry again day and night and voiding about every 3 hours. I have faith the neobladder and I will be great friends once I can focus on training it some.

If I can be of any help to you - please let me know. Mayo's did my surgery 8 days after they first met me - time is well respected there anyways.

 Bless you, Holly

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12 years 4 months ago #5218 by wendy
Dear Melodie,

I'm sorry to meet yet another young woman with bladder cancer, but glad you found us that you find the site helpful, thank you.

Getting pre-op chemo is fast becoming a standard in the U.S. for invasive bladder cancer. You might never know the exact stage of the tumor because many times when people get chemo their bladders are cancer free after the surgery, and I hope that's the case with you as it portends a good long term outcome. However, surgery is the treatment that will offer the best chance at total cure. The bladder sparing protocol would also call for concurrent radiation along with chemo as the best chance of cure while still keeping the bladder ("combined modalities" treatment).

I'm afraid your story is all too familiar to the women on this board, delayed diagnosis, courses of antibiotics, we here that again and again. I'm glad it was caught when it was...with no time to lose.

If you want the neobladder procedure you should seek out a surgeon who is competent with the technique and experienced with the issues surrounding women and neobladders. Rather than incontinence, hypercontinence seems to be the more common complication (if you ask me!).

I know many women who are quite satisfied with their Indiana pouches. There seems to be less of a learning curve with that technique than with the neobladder but when someone is motivated to get a neobladder and only a neobladder the chance is very big it will be fine.

There are a few institutions and surgeons who are specialized in neobladders for women, if you let us know your location perhaps we can give you a name close to you.

It sounds as if you're doing very well, all things considered, you're doing a good job of learning your options and being your own best advocate-congratulations on being strong under difficult conditions.

Take care,
Wendy

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