Diagnosed in 2010 at age 65 with Stage III bladder cancer
Key message: Missed diagnosis, be your own advocate
My experience has taught me to be my own advocate. It began close to two years prior to my diagnosis. I started having to get up at night to go to the bathroom. It was once or twice a night at first, and then up to eight or more times. I had an appointment with my gynecologist for my annual Pap smear and check-up so I mentioned the problem I had with frequent urination at night. He said that it wasn’t unusual for women of my age (I was about 63 then) to have frequency and urgency problems and suggested I try Datril. It seemed to help at first but then the frequency returned. I began to have more frequent daytime urination and some burning at times. Several months later I was riding my bike, 60 miles that day training for a 100 mile ride, and had to stop every half hour to urinate. I finished the ride and went to an urgent care facility. The female doctor told me that my problem was that I was riding my bike too much. However, she put me on an antibiotic. I later found out that there no bacteriawas found in my urine. Over the course of the next 18 or so months I was treated for four or five urinary tract infections (UTIs) and had one episode of gross hematuria (visible blood in the urine) after running a half marathon but it stopped after that one episode. I did not go to the ER because I was scheduled to have a bone scan two days later and figured I would bring it up then with my doctor’s nurse. I was told that it more than likely was “runner’s bladder” or exercise induced hematuria and to wait and see if it happened again. Well, it did a couple of times but only after long runs so I chalked it up to runner’s bladder.
Finally, I had a sinus infection and went to my primary care physician. He noted that my blood pressure was high, very unusual for me given my athletic participation. We waited until I was done the course of antibiotics and checked it again. It was still high and he wanted to find out why. Blood work showed some problem with my kidneysand he had me have an ultrasound. It showed one kidney blocked. At that point he referred me to a urologist and that is what ultimately led to my diagnosis. By the time I went to the University of Michigan for treatment I was diagnosed stage T3. After neoadjuvant chemotherapy and a radical cystectomy with an ileal conduit post-op pathology showed one lymph node with malignant cells. I then participated in a clinical trial for the drug Sutent. That was, at this writing, almost two and a half years ago. As of today I am cancer free. So far so good.
Hindsight is always 20/20. I should have realized that frequency, burning, blood in the urine, frequent UTIs were not normal. I read about all these symptoms and, yes, what I read confirmed what I had been told by the various medical professionals I had seen. I also read that bladder cancer was rare and almost unheard of in women. My delay in diagnosis was due in part to the doctors I had seen but also my own fault for not being more proactive and asking for further examination of my symptoms. If there is one thing that I feel should be said to other women, it is to be your own advocate.
2017 Update: BCAN was saddened to learn that after nine years, Pat’s cancer returned with a rare metastasis to her brain. A dedicated BCAN volunteer patient advocate, Pat’s passing has left our community with a deep sense of sadness, and steeled our determination to continue to raise awareness and search for a cure. You can read the final chapter of Pat’s story by clicking here.