First appt for bladder cancer this coming week at Mayo Phoenix

@ronzee50 I’m doing very well post surgery and recovery. My surgeon has presented me with an option of participating in a clinical trial. It’s called the ABLE32 trial. So I’m considering that as a possibility. Other than that everyone on my Mayo team was wonderful and very caring.

@dorothyb1153 That's great. Hope everything goes well for you.

@ronzee50
I hope you will not mind my asking a question and if you should, then I apologize in advance.

I am interested in knowing what the circumstances were which lead to your having a radical cystectomy? Was your cancer invasive and/or too complicated or was it a matter of all other treatments failing and this was the only viable option?

From your encouraging posts to others, you sound like a strong, determined and well adjusted person and I admire you. I think bravery is something we learn in increments and it then becomes part of our permanent emotional fabric. I hope this will become the case for myself as well since I first began this journey last summer.

Sending my very best wishes to you. Be well.

@deidre77 Hi Bobbi. I was being treated by my first urologist for BHP. I wasn’t getting any relief from BHP from him. I decided to get a second opinion from another doctor. I decided to go with him. His condition was he wanted to do a full work up. One of the tests was a ureteroscopy. Bottom line was it found I had high grade invasive urothelial carcinoma in my right ureter. That was removed and we thought that would be the end of that. However, on my next cystoscopy the cancer had moved into my bladder. Prior tests showed my bladder clean. This one, which I view on the screen, showed all kinds of growth which turned out to be bladder cancer. A TURBT was done to remove the cancer. That doctor said the best way to proceed was bladder removal due to the nature of the cancer. He said he could do it but he would rather have a doctor that does way more of this surgery do the procedure. He gave me two names. One of them was doctor Tyson. He agreed with the diagnosis and I had my surgery on May 8, 2025.

There was no talk about BCG or any other option. Having seen the growth myself after only a few months, I was not going to spend a lot of time investigating other options. I just wanted this cancer out. By the time my bladder was removed, it had invaded the muscle. So, I feel removal was the right decision. Honestly, I really didn’t have time to think about any other options. I do feel it was the right one for me given my circumstances.

I’m sure you will do great on you journey. Listen to what your doctors say. If things don’t sound right, trust your gut.

@ronzee50
Thank you for your reply and it appears you made the correct decision for yourself under the circumstances.

I believe in learning about one's various options; I think it lessens fears when you become informed beforehand of an eventual possibility.

Once again, I send my very best wishes.

@ronzee5;

Although I’m female, I have gone the pathway of a radical cystectomy as well. I did have chemo and immunotherapy first. I just got my first CT and it was cancer free. I couldn’t tolerate the immunotherapy—diarrhea and hospitalization for electrolytes—otherwise I would still be on it.
I’ve just been reading about this DNA test that is widely used called ctDNA that the speaker compared to CT. I hadn’t heard of it before. I’ll ask the group. But Just wondering if you had heard of it?

@kfontaine1002
Has anyone in this group heard about this ctDNA blood test that is specific for urothelial cancer and can detect recurrence?
Kfontaine

@dorothyb1153 Thank you.I am on the other side now, thankfully. TURBT was last Monday and oh my was that chemo instillation painful. I woke up half way through the 1 hour instillation period and wish that I would not have. Fortunately they did get all of the tumors out / high grade NMI, there were 3 - large, med + small. I will meet post op to find out treatment options. I also was able to order tumor sequencing, which should be available in about 3 weeks through a third party company called Signatera. I am cautiously optimistic. I inquired about leaving without a catherter and it was a complete non starter with the surgeon. It was in for 3 and half days - UGH.

@kfontaine1002 Hi. I am having ctDNA tests done through Natera. Theirs is called signatera. They take samples from your cancer and develope a personal profile based on your cancer and your body and look for cancerous cells in your blood. The point is to find them before the nest and start growing a tumor I also have bladder cancer and that is what my tests are looking for.

There are other companies that do ctDNA tests but Natera seams to have the best reliability of results. I guess it would work for other cancers too. It has a very useful purpose for high grade invasive cancers.