Bladder Cancer Group: Introduce yourself and connect with others

Wow, you have really been through the wringer with medical issues. To answer your question, we found that it was a good thing that we had a Mayo visit for an executive physical scheduled for my husband shortly after the local urologist said bladder was clear. He had looked at CT scan and done cystoscopy, had ignored a positive FISH test and the cytology of highly aggressive urothelial cell carcinoma. At Mayo they saw the bladder tumor on the CT scan read as negative by local radiologist and urologist. Mistakes do happen. Requesting a second opinion is always smart and can be done virtually nowadays.

Hi,
On Dec. 27, 2023 I had my first TURBT done. My pathology report came back in my portal as: urothelial carcinoma high grade, muscle invasive bladder cancer. The next day I reached out to Mayo Clinic Rochester for a second opinion. Within a week I was at the Mayo clinic and the diagnosis was changed to "NON" muscle invasive bladder cancer.
First diagnosis meant removal of my bladder, second didn't. So 1.5 yrs later I am still sporting my bladder and it looks like I will keep it for a long time to come!
I've received immunotherapy & chemotherapy and my last scans showed NED. Yahoo!
I am so grateful for Dr. Shah and his team at the Mayo Clinic!

In reply to my first post. I'm an over achiever. I started 2025 with a redo of a failed back fusion surgery of the L5-S1 at the end of January from my L2-L3 and L5-S1 fusion from last year. Went to the ER two weeks later for left leg swelling due to T2 diabetes. Doctors did tests and found a DVT blood clot in my right leg, most likely a result from the back surgery in January. Doctors also did an angiogram when I mentioned recent chest pains off and on from the past few months. I ended up with getting 2 stents in middle artery (widow maker) and left my right totally clogged artery to be done at a later date due to limitations of using dye during the procedure. Doctors started me on 2 blood thinners, one for my new stents and one to clear up the DVT in my right leg. Approx. 3 weeks later I'm back in the ER with gross hematuria (blood in my urine). CT scan showed a mass in my bladder and left pelvic. Doctors decided to stop the one blood thinner after tests confirmed the DVT in my right leg was no longer present. Cystoscopy confirmed the tumor. Had Cardio team and Urology team work together to determine ok to temporarily stop the blood thinner for my new stents long enough to complete the TURBT. Restarted the blood thinner for my new stents again. Ideally the blood thinner is planned for 6 mos. (3 mos. if needed to stop early) for new stents. Now waiting for Urology to let me know the official result of my TURBT and the next plan of action.

it has taken 8 months before I could see my primary doctor for a referral . Meanwhile I paid to go see uroligist. , paid for blood work, MRI , all that for a diagnosis. Finally picked new primary doctor, saw him 3 days later and got my referral. Doctor and nurses are been really good and understanding for the time I didnt have insurance and now I on Cobra insurance because I lost my job

Hi! I'm new here. Just recently had my first TURBT last week and saw the lab results "invasive urothelial carcinoma high grade in lamina propria" in the providers phone app. I'm at home with a Foley catheter attached to me until next week when I meet with my local urologist to go over the lab results. I'm trying to see if anyone had ever requested their local doctor request a 2nd opinion to review the initial lab findings?

First diagnosed five years ago. Had TURBT followed by BCG immunotherapy. Recently routine cystoscopy found recurrence, one papillary tumor, again high grade, non-muscle invasive. Just had 2nd TURBT 2 weeks ago. Will do BCG course again. Main concern now is when can I get back to regular exercise, (water aerobics, weight training, etc.)

I finished the BCG treatments 3 weeks ago. Last week I had my first follow up. He scoped my bladder and found 2 new areas that is suspicious. To me it looked liked the same growths I had in January. It appears I still have the cancer. My urologist has me scheduled in another week for a TURBT. Will do a scraping and cauterize and we shall see what the biopsy will find. So another couple of weeks of worry and scared of what they will find.

I’ve been hurting when I pee for 4 days, it was my last treatment has anyone else experienced this? I have been told its bladder spasms

My symptoms started on the fourth treatment fifth treatment got worse, sick treatment horrible due to the pain I have when urinating

I’ll have to remember AZO if I ever start having symptoms. I finished my 6th BCG. The 6th one made me the most sick of all but now I have to wait one month before the doc takes a look. I’m not sure how I can sleep but I’m very hopeful and spend a lot of time praying. I’ll add you to my prayer list. Good luck!
Fran