My journey with bladder cancer began about four years ago. I kept having "Urinary Tract Infections", over and over and over, and my internist kept prescribing antibiotics again, and again, and again. I was overdue for my pap smear and went to a new practice, recommended by a friend, where I was seen by a wonderful nurse practitioner. I happened to mention the recurrent "UTIs" and she firmly told me that, if you have more than three UTIs in a year, you go to a urologist. She recommended a practice nearby, and even told me which of the five urologists there to avoid!!!
Sure enough, a few weeks later, another "UTI" had me calling the urology practice, where I took "potluck" from the recommended doctors. Here LUCK stepped in, and I met my urologist, Dr. Janoff, who had trained with the best, was young and whose personality fit mine perfectly. First, he ascertained that I did NOT have a UTI even though I was symptomatic. Cystoscopy showed a lesion in the bladder. TURB led to a diagnosis of low-grade papillary carcinoma, but Dr. Janoff had some questions about some "irritated" areas of the bladder. A few weeks later, a second TURB confirmed his suspicions of CIS.
Now, after a complete course plus maintenance of BCG (at continually lower doses), I am still doing great. All my horrible "UTI" symptoms are gone and I recently graduated to 6 month exam intervals!
Lessons to be learned from my experience? Repeated symptoms of urinary tract infections are NOT to be ignored. This was the only symptom I had....NEVER had any blood in the urine, microscopic or otherwise. Find a urologist who is an expert in bladder cancer (here I just had good luck...REALLY good luck).
Many urologists see primarily men with prostate issues...or, if they do specialize in women, it is for typical incontinence problems. To find someone really GOOD in bladder cancer treatment is VERY IMPORTANT.
I came to this site, knowing nothing about bladder cancer...in fact, I often joke, that I never even knew I HAD a bladder! At first, of course, panic set in ...I kept telling myself that at least, now I knew what I would die of! This site provided so much information...it took several tries before I was able to digest most of it. But it was the people here who made a big difference. I felt, and still feel, that there is an army of friends who are holding my hand as I walk through this.
Sara Anne
I know, we have to stay on top of things probably forever, but because you went thru the BCG and looks like your bladder responded well, you stand a great chance of moving forward.........yea!
