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Having bladder removed? What should I do?

1 week 4 days ago #55320 by sara.anne
I think that she is wise not to consider a neobladder with all her other issues. The third one that you mention is often referred to as an "Indiana Pouch" and you can find a lot of information about it by using the "Search" function near the top of the page to bring up Forum discussions on it.

As for the mitomycin you mention, this is used in two different ways. The one that you have discovered is a wash that is almost routine after a TURB. The bladder is washed immediately after with mitomycin...the thought being that it might prevent any microscopic bits of cancer remaining. BCG is administered after the bladder has thoroughly healed from the TURB under a protocol that is often once every week for six weeks, and then a maintenance series of once every week for three weeks about every three months. Mitomycin HAS been used similarly when BCG has not been available or in unusual conditions when a patient is unable to tolerate BCG, but it is not quite as effective.

Hope this helps clarify....

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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1 week 4 days ago - 1 week 4 days ago #55319 by SC48
Hi, thank you for your answers, they were very helpful so far. We are from Montevideo, Uruguay (South America) but we are willing to travel to other countries if it means a better outlook for her.

We have been thinking that the neobladder might not be the best option since it's a major surgery and her body has suffered from many 'attacks' due to her Multiple Sclerosis disease and also because of incontinence that could make the whole process not as successful as it should be. And since you guys said that it's not a very successful procedure on women, we don't think it is the best option for her.

We consulted another urologist today and he mentioned mitomycin which is a intravesical therapy for bladder cancer. My mom hasn't have the BCG treatment done yet because of the polyps but this one is administered right after TUR, there's no need to wait a certain period of time to get it applied. @cancersucksbigtime seems to have experience with mitomycin and it didn't work out for them. Maybe it's better to try it out on my mom before having her bladder removed. Either way, we are still going to inform us better in all the possibilities and perhaps a stoma and bag option would be the best for her or I also read about an internal pouch which is catheterised through an opening on the abdomen.

Thank you all for your answers!

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1 week 5 days ago #55318 by cancersucksbigtime
Sara Anne has given you very good advice.
I went through several treatments for bladder cancer with a urologist that I trusted. First was 15 treatments of mitomicen (sp?) and then 17 BCG. None did the job and he told me that I would have to have my bladder removed. I got a second opinion at a highly regarded cancer center in Philadelphia - Fox Chase Cancer Center.

The urologist there specializes in oncology and she is excellent. While I did not particularly wish to lose my bladder, it was a lot better than losing my life to cancer.
That surgery was performed in March 2016 and while the journey since has been challenging, I am doing very well and happy to be cancer free these days.

Bottom line - you would do well to find the services your mother will need at a site that is able to give her the best, most successful outcome you can .

I wish you and your family well. And by the way, my surgeon also did not do a neo bladder. She agreed that that procedure is not very successful in women.
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1 week 5 days ago #55317 by sara.anne
So sorry to hear about your mother's problems. She (and you) have a lot to consider. Perhaps this is the time to get a second opinion at a place that specializes in bladder cancer, or if you already are at one from a second urologist. When I was diagnosed my urologist said that if it ever came to the time that I needed a cystectomy he would INSIST that I get a second opinion. I am thinking of places like MD Anderson, Memorial Sloan Kettering, USC, Stanford, Johns Hopkins......If you let us know your mother's geographic location maybe someone will have a suggestion for you. There may be other options for her.

As for a urinary diversion, the Cleveland Clinic has an excellent brief discussion of the three possibilities

https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

Also, a neobladder is sometimes not as successful in a female as it is in a male.

The most important factor in obtaining a successful diversion is the experience of the urological surgeon. You want one who has done many many of these surgeries...not just two or three a year. Don't be afraid to ask questions about this...how many and how successful they have been.

Wishing you and your mom all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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1 week 5 days ago #55314 by jeffrx
Sounds like she is having very fast recurrences that are happening even during the healing process. She seems to be at high risk. Situations like hers are tough because the BCG treatment requires a healed bladder. I would consider a second opinion before doing anything drastic, but it seems reasonable given her almost immediate multiple recurrences. A second opinion with another expert or even an oncologist is always a good idea in my book.

12/2015 - TURBT, non-invasive T1, mixed grade, 3 tumors
1/2016 - Begin BCG weekly for 6 weeks
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1 week 5 days ago #55313 by SC48
Hello everyone! I recently joined this website because of my mom's situation. She's 55 years old and also suffers from multiple sclerosis. A year ago or so, we found out that she had malignant bladder polyps (T1 high grade) which she had removed. She was supposed to get the BCG treatment done but a few months later (April 2018), they found out more polyps in her bladder (also a T1 high grade) so she had them removed too. She was going to get the BCG treatment again, so today (May 2018) we went to the doctor's appointment so she could have a cystoscopy done to start with the treatment. They found several polyps again. I'm worried because they grew very fast, in just a little bit more than a month.

In the face of this quick growth of polyps, the doctor proposed having her bladder removed (cystectomy) since she thinks that doing another TUR surgery isn't going to work out due to the fast reappearance of polyps in the zone and there's also a risk of them being more invasive. She suggested a neo-bladder reconstruction which uses part of the intestine to recreate the organ. And, as another option, she also suggested an urostomy which consists of an artificial opening for which urine passes through to a bag. She also said that we still have the possibility to keep doing these TUR surgeries to remove the polyps but that there's the risk that they will keep developing too.

We are not really sure about what to do since we believe the neo-bladder reconstruction is a very big surgery that has its risks and it would be nice to read your opinions and experiences.

Thank you!

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