In December 2001, my life changed when I was diagnosed with bladder cancer. In the summer of 2001, I noticed urinary changes that I attributed to turning 48 years old. Continency and frequency became issues and my urine turned cloudy with a tinge of darkish red from time to time. I wasn’t concerned since I had no pain. I learned to know where every restroom was located, to pad up and carry spare underwear. In December 2001, I was at the mall doing some last minute Christmas shopping. I stopped to use the restroom on my way out of the mall. There was significant bright red blood and this time it got my attention. Not really being sure of the source I called my gynecologist, thinking that this might be a worst-case scenario, as I had a hysterectomy at the age 40.
The physical exam revealed no bleeding. However, the urine dip was strongly positive for blood and negative for bacteria so this was not a urinary infection. I was referred to a urologist who then ordered a cystoscopy that revealed a large tumor that was noted to be visually malignant. Surgery was scheduled for December 20, 2001 in the hospital rather than an outpatient surgery center as the urologist did not know what he might be finding in my case.
During surgery it was discovered that my bladder was only one layer in thickness. It perforated as soon as he attempted to resect the tumor, which fortunately was noninvasive. I had what is referred to as TCC or transitional cell carcinoma. What was originally talked about being an outpatient transurethral resection turned into an open abdominal surgery and a four-day hospital stay. I was discharged at noon on Christmas Eve day with over 20 family members and friends coming for a party on Christmas Day.
A few weeks later I was started on intravesicular BCG and was unable to complete the series of treatments due to bleeding complications. BCG is given directly into the bladder via urinary catheter, retained for two hours and then voided by patients. It is an attenuated form of the tuberculosis bacteria used to bring an immune response by triggering an inflammatory reaction in the bladder. This is then to bring disease-fighting cells to the bladder.
I was housebound each day I had a treatment. There were the common side effects of flu-like symptoms that I experienced since my immune system was working overtime. Bleeding indicates that there are open areas in the bladder for bacteria to enter the bloodstream and the treatment is discontinued until those areas have healed.
I learned early on that 80% of TCC bladder tumors recur and underwent cystoscopy every three months for surveillance. In August of 2005 I had my first recurrence. One year of Intron A (interferon, another immunotherapy), and a short course of BCG were ordered for me. I had a reduced dose of BCG due to prior complications and I began a six-week course. Another three-week course was done in December 2005, March 2006 and June 2006 with cystoscopies every three months.
In February 2007, cystoscopy revealed a suspicious area. Surgery was performed and turned out to be benign. I didn’t have another cystoscopy until June 2007 and that one revealed another tumor. Pathology on this tumor showed that the tumor grade had changed from Grade I to Grade II. In October 2007, another cystoscopy revealed a new tumor. During this surgery to remove that tumor, two more tumors were found that hadn’t shown up on my cystoscopy. They were all Grade II TCC tumors. BCG was again resumed for six more weeks with some weeks skipped in between due to complications.
In May 2008 my treatments were scheduled for a three-week period. Urethral dilation was performed in August 2008 because BCG was causing urethral scarring and urination was difficult. In November, I voided a large quantity of blood. A CT scan of the abdomen was negative and BCG was dropped down to 1/30th, the lowest dilution possible with blood in the urine continuing. I saw the writing on the wall and knew it was only a matter of time before the treatments had to be discontinued due to the severity of the side effects.
In April 2009, colpopexy was performed for a bladder prolapse. It was not successful. We tried a course of BCG again in July of 2009 but this now caused too much urinary retention. I was not voiding properly and it couldn’t be administered if it couldn’t be voided out after the two-hour period. Another cystoscopy in September 2009 revealed cancer again. This was now the fifth recurrence since 2001 despite BCG, a year of Intron A and Mitomycin C, a chemotherapy drug being administered in the operating room after my surgeries.
My doctor referred me to Johns Hopkins in January 2010 where cystectomy and diversion options were discussed. There was no invasive cancer so I had some time to weigh options. I was no longer able to tolerate BCG because it caused bleeding even at the lowest dose. The prolapse was worse than ever and I had tried two different pessaries, both of which caused erosion and bleeding. Urination was becoming more difficult and I was catheterizing more and more often to empty my bladder properly to prevent infections.
I knew it was only a matter of time until the cancer would return, and the pathology had gone from Grade I to Grade II. At Grade III, cystectomy would no longer be optional. My cancer was classified as high risk due to the thinness of my bladder wall. We knew that it would take only one malignant cell to leave the bladder through a perforation or open area to become invasive. Also, metastasis could happen quickly due to the thinness of the bladder wall.
The statistics of TCC and the low odds of it becoming invasive changed dramatically for me. On December 16, 2010 I underwent a nine-hour cystectomy with urinary continent diversion (Indiana pouch) at Johns Hopkins performed by two doctors and a robot at a time when my cancer was noninvasive and I was otherwise healthy. It’s now been six years since my cystectomy with Indiana pouch surgery.
There were some complications – an infection required a weeklong hospitalization with IV antibiotics and two months later I had another hospitalization for an ileus. The pain from that was so intense that it has made me uneasy about traveling and not having immediate access to a hospital. Body image is also an issue for me, with multiple incisions from repeated surgeries as well as my stoma. My doctor told my husband and I that we will know more about my situation than most ER doctors.
My pouch needs to be emptied on a regular basis and I can never leave the house for any reason without my supplies. Overall the cystectomy and Indiana pouch surgery was the best decision. No more cystoscopies every three months. My doctor told my husband and I that we played “Russian roulette” at every exam and there was much anxiety with each appointment. I have no more painful treatments that went on for weeks at a time. I will forever have yearly scans of the pouch and testing for metabolic issues that have arisen as a result of the surgery. The stoma may develop scar tissue and require maintenance surgery from time to time. However, the best part and the part that has made it all worthwhile after nine bladder-related surgeries in ten years is that I am cancer free!
I consider my story to be a success story. Some are not so fortunate, particularly women who go longer before being diagnosed and have worse outcomes at all levels than men. I have doctors who are diligent in my care. I did my own research and found wonderful support groups, especially the Bladder Cancer Advocacy Network, with very practical information. I will be followed by an urologist for the rest of my life and will continue to consult with my online groups and attend events to raise awareness. There is no need to go on this journey alone we can face this cancer together!