Bladder shrunk to 25% capacity after after BCG treatment

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?

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.

@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.

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

I was recently diagnosed with stage 1 bladder cancer and I am being considered to enter drug trials at Mayo clinic in Scottsdale AZ. Part of the routine is BCG treatments and I am anxious about this process especially catheter insertion which I find very very painful. I wonder how other men tolerate this procedure? Note that I am not sure if this is the right place to post this concern so please direct me to wherever the appropriate blog is located in this forum.

I'm tagging a few members who have experience with catheter insertion and bladder cancer like @jakedduck1 @predictable @dan80 @jackpine @sepdvm and who may be able to offer some tips.

@bajaman, will you be taking part in a clinical trial? How are you doing?

@bajaman , My husband was diagnosed with bladder cancer in 2019 and unfortunately it was quite aggressive. He began with a chemo regimen then went to BCG after an initial partial cystectomy. His cancer returned while on maintenance BCG so he was considered a BCG failure. He is just over a year since a radical cystectomy and neobladder surgery. Part of his maintenance currently and potentially forever is self catheterization 2-3 times daily. Like you, he was very fearful of the discomfort of catheterization, brought on by the repeated cystoscopies. What he found during the scopes and BCG treatments was that different health professionals have different techniques and many have figured out how to eliminate all the pain. The more experienced they were, the better their technique. He learned that waiting a few minutes after the local anesthetic is infused before catheterizing makes a big difference, esp for cystoscopy. If they are in a hurry, ask for those minutes. Lots of lubrication is another factor that helps considerably. Perhaps the biggest thing was to learn to breathe and relax instead of tensing up and holding your breath. That was difficult at first but just comes naturally now. For BCG infusion, you can likely also ask for a smaller catheter size if it is painful. Enlarged prostates in older men make it difficult to pass a catheter and a size smaller may help considerably. He had almost no side effects from BCG, only a slight bit of urgency to urinate the following day. Good luck to you, we hope this treatment is very successful for you. Mayo Scottsdale is a great choice.

Good morning @bajaman. My experience with bladder cancer and BCG treatment might ease your concerns. During transurethral resection of prostate (TURP) tissue, my urologist discovered a small tumor on the surface of the lining of my bladder and removed it. A few weeks later, in examining the bladder and reduced prostate through a resectoscope, the doctor found a dozen more small tumors that were somewhat more advanced, but not growing below the lining into bladder muscle. Walk-in surgery performed another TURP to remove them, and two weeks later I began a weekly BCG treatment of five injections. That was 12 years ago. My bladder has been clear since then, as we have learned with quarterly, then biennial, and now annual inspections with a cystoscope. All of these procedures involved injection of a catheter-like device inserted through the urethra in my penis. This could have caused pain and infection, but it never has, thanks to judicious use of a pain killer and a good antibiotic before a cystoscope is inserted through my urethra. Today, I'm regarded as a survivor of bladder cancer; I don't consider that to be miraculous, but good medical care by a series of three urologists at my HMO clinic a dozen miles away from home. I hope your treatment and recovery is as rewarding as mine has been. Martin

Thank you Martin for sending me your encouraging words about your success with your bladder cancer treatments. I will be thinking about what you said for a while. I wonder if I could ask you to respond one more time and let me know what "pain killer" you found to be effective? I think lidocaine is the typical pain killer but this only provide topical treatment I believe. It was interesting for you to also mention an antibiotic which is perhaps also important. Many thanks for taking the time to respond to my post! Frank

Thank you @sepdvm for your response to my post. I had a long conversation with a friend who is a nurse in a urology dept and she also has said that the staff that handlies the cystoscopes should wait several minutes, which did not happen during a recent examination, however you can be sure I will slow down the nurses next time! Many thanks for your message and encouraging words! Frank (Best wishes to your husband also)