Karen’s story: My story started 11 years ago when I was 51. I started to have frequent urinary tract infections about four to five times a year. They were very severe; I had a lot of pain with them and a lot of bleeding isolated to the UTI. Then after about a year of being treated by my primary care provider, she sent me to a local urologist. He started me on low dose antibiotics and cranberry supplements. I repeatedly kept saying to him that something just isn’t right when I urinate. It just feels like something is falling out at the end of my stream. He kept asking “Do you have any blood?” I said no, I don’t have any blood when I’m urinating.”
What ended up happening though is I started having some monthly spotting. Being postmenopausal, I really didn’t think much about it. It occurred about the same time as I usually have my period. This very small spotting started happening weekly. I went back to my primary care provider and she thought it was something GYN related. She sent me for an interventional sonogram, which I had done right before Thanksgiving. My female “plumbing” was fine, but a cauliflower shaped mass was visible in my bladder.
Maybe because I’m a nurse, they just said I had a mass. I thought maybe it was like a fibroid. I just wasn’t even thinking cancer at that point, so I went back to the urologist. He did the cystoscopy in the office and told me the bad news. Again, there was so much denial on my part since as a nurse, I should have known better. I went to the appointment by myself and there I was alone getting this news. I had a TURBT in December. The diagnosis was papillary urothelial carcinoma and my tumor was nine by six by seven centimeters. The pathology report came back as low grade, which was later read by JHH as high grade.
I received two courses, six doses each of BCG but, by July of 2011, I was still positive for disease. I was kind of saying to myself, this isn’t right. On my own I made a switch and went to Johns Hopkins because I live about 1 ½ hrs from there & had heard they had a dedicated bladder cancer program. I ended up transferring my care there. I had disease in the lower portion of my left ureter. They put a stent in and then I received eight doses of intravesicular mitomycin-C. Since that time, I’ve had three recurrences, two in 2012 and one in 2014. All were treated with one dose of mitomycin. I’ve been disease free since 2014.
I found BCAN completely on my own while surfing the internet looking for resources. I remember downloading the new patient handbook, as back then the organization wasn’t as robust as it is today. I became more involved when my husband was diagnosed with muscle invasive bladder cancer in 2016 and have stayed involved since that time. He used the support services of BCAN which helped him make his decision on which bladder diversion to choose. Following this, I became a patient advocate for BCAN. Read more about Karen and her husband Roger who was also diagnosed with bladder cancer here.