T1, Grade III urelethial bladder cancer with CIS

Me: diagnosed at age 43, non-smoker, very light drinker, no family history, worked 2 summers during college at an oil refinery, but used all prescribed safety equipment, very physically active (competitive volleyball and softball player), with a computer database/programming career.

My Story: I began having pain while urinating and slight urgency the last week of Oct. 2005. A week later I got antibiotics for what looked to be a urinary tract infection (microscopic blood on stick, WBC slightly askew). It didn’t help. Culture was negative for infection. A few weeks later, another urine test, another antibiotic because a strep infection (bizarre) was detected. It relieved symptoms slightly, but not totally. In the meantime, I developed a slight foam/bubbles in my urine… but still no visible blood.

Next step: pelvic ultrasound on Dec. 15, 2005. The tech took about 20 snapshots around my right bladder area. She finished that then asked me to empty my bladder and come back for a vaginal ultrasound. Uh-oh, that wasn’t on the itinerary. At that point I knew there was a problem. My happy, carefree life changed instantly. A sleepless night followed. I visited my PCP next day. I found out I had a “growth” in my bladder and I needed to see a urologist.

12/23/2005: consult w/ urological oncology surgeon at Univ. of Michigan (fortunately located 3 miles from home). Cystoscopy revealed 2 cm nodular tumor in trigone region that, according to the doc, looked somewhat invasive. Merry Christmas to me, eh? 😉

12/30/2005: chest xray (negative)

1/4/2006: CT urogram (negative w/ an enlarged node)

1/5/2006: TURBT (spinal block is the way to go if you get a choice)

1/12/2006: Doctor calls with pathology report: T1 , Grade III w/ CIS. Tumor was nodular in appearance, 2.1 x 1.5 cm, and despite the report still felt that it looked like it might be muscle invasive. Given that, the 40% possibility that the pathology could be understaged (which I had already learned was possible from the Webcafe), the enlarged node (which I’ve learned since could just be an immune response to the tumor), my relative youth and fitness level, the doctor recommended I remove the bladder with a neobladder replacement (if the cancer cells are not too close to the urethra, that is). Aggressive treatment, yes, but I think the right decision for me in the long run.

Once I came to this decision, my doctor asked me to participate in a Phase I bladder cancer vaccine study which she is leading at the U. of Michigan. It’s going to mean some extra treatments and procedures before my cystectomy next month, but nothing too bad to merit not doing it if a possible cure could come out of it. If successful, a person with BC would have a vaccine injected into their tumor made from their own dendritic cells (derived through a process called leukapherisis) and their (dead) tumor tissue (obtained through a TURBT). It likely won’t help me much, (although it’s not out of the question), but, being a Women of Science 😉 it’s kind of cool being a part of something like this.

Finally, I’m so thankful for the existence of the Internet in general and this website in particular for providing me with more than enough information to get a handle on my situation immediately after I found out I had a tumor in my bladder. I’ve learned that, while this is by far the scariest thing to ever happen to me, my battle is very win-able. I’ve been particularly interested in the stories of the people around my age and the issues they’ve encountered.

Good luck to all, let your friends and family help you and think positive!