Bladder shrunk to 25% capacity after after BCG treatment

Posted by tuck19xkrle @tuck19xkrle, Jun 15 7:07pm

Bladder contracture after BCG Immunotherapy. After ten months my bladder is at 25% capacity. Capacity testing indicates 100ml to 125ml maximum capacity. My urologist nor oncologist have experience with this. (BCG treatment has stopped due to this contracture)

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Hello @tuck19xkrle and welcome to Mayo Clinic Connect. I can understand your interest in wanting to connect with others who have experienced this problem. You say that your urologist and oncologist are not acquainted with this type of problem.

On Connect, we do have a discussion group on Bladder Neck Constriction. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/bladder-neck-constriction/.

Here is an article from Cleveland Clinic that you might find helpful, https://my.clevelandclinic.org/health/diseases/15440-bladder-neck-contracture-of-the-bladder-neck

Please know that it is always the patient's right to get a second opinion if you don't feel that your current medical team is able to help you. If you live near a major medical center, such as a university medical school or a facility like Mayo Clinic or Cleveland Clinic, I would recommend that you seek another opinion. Facilities like university medical schools and the clinics mentioned earlier have vast research that they can call upon as well as extremely experienced medical professionals. If you do not live near a medical facility like this, you could certainly request a video consult to see if there are other treatments available.

Might you consider a second opinion?

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Yes, I would consider a second opinion.
I do not have a problem with bladder neck contracture. My bladder itself has contracted to 1/4 size. BCG treatment was stopped and it was decided to replace it with chemo therapy. But due to my bladder size, when the 80cc of Mitomycin was injected into the catheter my bladder could not hold it and most came out around the catheter. I have an appt on Monday (6/20) to hear the next proposed course of action. Then will seek second opinion.

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@tuck19xkrle

Yes, I would consider a second opinion.
I do not have a problem with bladder neck contracture. My bladder itself has contracted to 1/4 size. BCG treatment was stopped and it was decided to replace it with chemo therapy. But due to my bladder size, when the 80cc of Mitomycin was injected into the catheter my bladder could not hold it and most came out around the catheter. I have an appt on Monday (6/20) to hear the next proposed course of action. Then will seek second opinion.

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@tuck19xkrle, if you'd like to consider Mayo Clinic for a second opinion, here's more information about requesting an appointment and more: http://mayocl.in/1mtmR63

Tuck, I'm also going to invite fellow members @sue225 @glgraham @judith4 @texascitylady into this discussion. They or their loved one have had Bacillus Calmette-Guérin (BCG) treatment for bladder cancer and they may have experience with shrinkage of the bladder due to reatment.

Best of luck with your appointment tomorrow. I'll be interested to hear what you learn.

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@colleenyoung

@tuck19xkrle, if you'd like to consider Mayo Clinic for a second opinion, here's more information about requesting an appointment and more: http://mayocl.in/1mtmR63

Tuck, I'm also going to invite fellow members @sue225 @glgraham @judith4 @texascitylady into this discussion. They or their loved one have had Bacillus Calmette-Guérin (BCG) treatment for bladder cancer and they may have experience with shrinkage of the bladder due to reatment.

Best of luck with your appointment tomorrow. I'll be interested to hear what you learn.

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My husband did not have shrinkage of his bladder after BCG. He is into his 3rd year of bladder cancer & after BCG treatment, there is no sign of recurrence so far🙏🏻 Good luck to you

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