Bladder wall thickening/terrified it's cancer

I had high grade bladder cancer that did not respond to BCG so I am seven months post radical cystectomy/ ileal conduit and doing well. It sounds like something to watch ongoing but not to be too upset at this point. I also have IBSD and it is more of a challenge than dealing with the urostomy. I go to UW hospital as well but am retired Mayo Jacksonville. Wish I could get up to Rochester. I’m four hours south. What are they doing for your IBSD?
Keep an eye out for hematuria and keep up with Mayo urology but don’t worry about it. Hang in there. You’ll be okay.

What kind of symptoms did you have, if you don’t mind?

I had bladder pain that I thought was a bladder infection. When that turned out negative, I thought maybe it was interstitial cystitis. I followed their recommended diet for a several months. Didn’t help. Then I started seeing blood in my urine. At times, quite a lot. That’s when I pushed for a CT and got the diagnosis.

Okay...catch your breath! I feel your heart, your panic and fear. Totally understandable given your history and all the things your have gone through and are going through. You've done some hard things and are doing some with your husband as well. I can see how it just might seem to be too much. I understand also why your factors want yo treat this seriously and catch it early... if it is something. It looks like you've taken steps in the right direction, and are moving forward proactively. I always Try to not let the fear make decisions for me ... but it can be hard.
You seem to be handling this so well given the situation. Just do your you! You can do hard things but I'm praying this is nothing. Keep us informed and let us know how you are doing. Don't nourish yourself on the what ifs, focus on what you have! Hugs!

I was diagnosed with low grade noninvasive bladder cancer a year ago, in 2022. I've had about 5 TURBTs, all low grade superficial until December 2023 which shows muscle present. My urologist is going to recommend bladder removal soon according to the NP. No mention of chemo or anything else. Any input anyone could give would be appreciated!

And it's still low grade.

And I went through BCG treatment which was apparently unsuccessful.

Have you considered a second opinion?
My mother had chemo and radiation for her bladder cancer and it preserved her bladder. There may be reasons this is not an option for you but it's never inappropriate to get a second opinion. Wishing you good luck

Thank you for responding. I think I will get a second opinion. I've read that once the muscle gets involved it's best to remove it, but was surprised that chemo wasn't at least considered first. I go for another TURBT on 2/6 after undergoing one on 12/5 because doctor couldn't get the whole tumor removed. Then he will give me his recommendation for certain. Also if it must be removed (bladder) I would rather wait till July when I'll have Medicare & can go possibly to Mayo clinic rather than stay in state (TN) I would at least have more options. If you dont mind, when you can, would you tell me whether your mom's was into the muscle and how long ago it has been? I'm my mother's caregiver which is another reason I'd hate to be incapacitated for months. Thank you in advance.

My mother's bladder cancer treatments with chemo and radiation started in 2019. They believed It had just started infiltration into the muscle but not enough that they felt surgery was required.