Bladder Cancer Group: Introduce yourself and connect with others

Hello Colleen,

Colleen I see that you’re very helpful in getting people to the right place on the site. I have urothelial carcinoma with spread to the lungs. I started with immunotherapy which stopped working and now I’m taking carboplatin and gemzar. If this doesn’t work, I believe I will be onto The Sylvester clinic in Miami.

Any help you could get me in navigating to places where people have similar situations on the website would be greatly appreciated. Thank you very much.

I go to Doctor on Sept 19 for a scope check to see if ADSTILADRIN #1 treatment worked. If clear, i go for
2nd treatment on the following Sept 19 -so I assume every 3 months go in for a treatment

Good luck its a life saving procedure. You do get used to the inconvenience but worth it. Foss

Thank you for this encouraging message. My husband is having cystectomy Monday.

Seven years ago I was diagnosed with bladder cancer. After trips to 2 Urologists to confirm I was treated with BCG treatments which did nothing for my condition. I also had it in the Prostate. After a discussion and many systoscopies I didn’t have much choice to remove my bladder and prostate as the cancer would soon break through the bladder lining
Which would have spread to other organs and game over. I wear a urine bag which was hard to get used to but better than the other alternative . After a few weeks I was used to it and no problems since.
Each year I return to hospital for annual scan and check up. No sign of cancer returning so for me it was a blessing in disguise. Hope this helps folks suffering the same misfortunes. There is life after bladder removal

Hang in there. …..Foss

My name is Bob, I’m 63 for a few more days and I was diagnosed with bladder cancer about two months ago. The cancer was detected by a routine CT scan on my abdomen and pelvis. A more thorough CT was performed and a biopsy was also performed. The biopsy showed a lo grade tumor that hadn’t spread. My treatment by a urologist is to attack the tumor with a laser which was done initially at the end of July. Apparently laser blasting tissue in the body is not like it is on TV where it burns a neat circular hole but inside it makes quite a mess so visibility is very poor. I’ll have another procedure mid September to make sure the tumor has been removed completely. Doc says no chemo or radiation is necessary but he also stated there’s a 30% chance of it returning (I corrected him and said there’s a 70% chance of it not returning). The tumor is located on the right ureta and my right kidney has been relatively painful. I’m wondering if it’s a mistake not to have chemo or radiation therapy once the tumor is fully removed.

Thank you for your response. I have no idea what to expect w/ BCG treatment (until I meet with the Specialist), so your experiences are very interesting and helpful to me. The scoping last week was something of a shock. Urologist no sooner got done saying, "so, if you are clear today, we start doing annuals.....to uh-oh, what's this?" Somewhat hard to explain why I changed Dr.'s. The Urologist had a general practice, treating a large number of conditions. I wanted to see a Bladder Oncologist that specializes in that condition. Also, Moffitt Cancer Center has a number of proven paths to take if BCG doesn't work. Sounds odd for me to say this now, but my original choice of Urologists was quite random. When I had my first appointment, I never considered that I had cancer. Two and 1/2 years ago, I saw some blood in urine, saw an MD who said that I had a prostrate infection. Shortly after, no blood. In the way of advise, he said that at my age it would be good to just see a Urologist, and kind-of set a baseline in case you need a Urologist later. He initially ran tests...everything looked great....lastly a cystoscopy revealed 2 tumors. I was shocked, but felt very lucky that an apparent prostrate infection led to early detection of bladder cancer. Thanks again and be well.

You didn't say why you switched urologist but if you were not comfortable, you should do what you think best. As for the treatment of BCG, I'm in the midst of it myself. So far, it is working. It is important to do the full routine. 6 weeks first, get scoped, then if it seems to have worked, proceed every 3 months with another 3 weeks of treatment, get scoped again, etc. for a year or more as you taper down. Look on line for the treatment schedule and go over it with your Doc. It can be uncomfortable and if you just can't tolerate it, lower dosage seems to be as effective per my doc...but stick with the full doses if you can tolerate it. Be hopeful and upbeat.

Hello, I'm Brian, age 74 living in the Tampa Florida area. I'm very thankful to have found your group. I was diagnosed with bladder cancer about 2-1/2 years ago. Had two tumors removed via TURBT in 2023. Pathology graded them Ta/slow growing, non-invasive. I had 2-1/2 years of clear cystocopy visits until recently. Urologist did biopsy on very small suspicious growth and pathology came back Tis/CIS fast growing, non invasive. Urologist suggested BCG. I made the tough decision to leave Urologist and have records transferred to Moffitt Cancer Center here in Tampa. Tough because my Urologist and his entire staff were wonderful and very kind to me. My wife helped me make the decision (a Moffitt retiree.) I meet with the new specialist next week. I'm trying to prepare mentally for the road ahead and I know this group will help.

you are on a good path...I have had NMIBC since 2012...I am getting closer to removal as time progresses....once the urology guys have you in their care....they know more about your bladder than you do!!...the good part of NMI is it stays out of the muscle layer...!!...good luck....!!