Be Your Own Advocate!
It seems my diagnosis story is not unique. Primary doctor checks me for a UTI and not finding any infections prescribes medicine for irritable bladder. I am an older woman after all and well, things just get thin down there and the nerves start complaining.
A follow up appt with the primary still shows no UTI and he adjusts my medicine to lessen the side effects of dryness in my mouth and sinuses.
Small trace of blood in urine
But wait - upon reading my urinalysis on my Centura patient portal I notice there is a small amount of blood in the urine. I call the primary to ask a question and I never receive a call back. Upon my own research, I find that having a trace amount of blood in a urine sample can be accepted as normal. Still no return call.
3 months later, and I live through a weekend where the toilet is full of blood. So by Monday, I bypass the primary and make a urology appointment myself.
Finding out I had cancer
Two weeks later I have a cystoscopy and there on the screen are some ugly looking lesions in my bladder. As the doctor was leaving the room, I asked him if he thought this was cancer and he said "yes - this is cancer." So there I was sitting in a doctors room as the doctor was about to leave and I learned I had cancer.
My diagnosis happened at the beginning of the COVID pandemic. March 3, 2020, was my first surgery and April 3, 2020, my second to confirm staging. Stage 1, grade 3 highly aggressive bladder cancer.
Choosing to do BCG treatments
My options were to do BCG treatments to save the use of my bladder or remove the bladder to rid myself of this cancer for sure. There is no definitive option for a "younger" patient to go. Removal is seen as an over aggressive approach and BCG is the gold standard for aggressive bladder cancer. I chose BCG.
It took me 8 weeks to do my first round of 6 BCG treatments that started May 29, 2020. My body, uncannily, would start bleeding a day before my next treatment and I would have to postpone a week. I rarely had flu like symptoms, it was the bleeding, burning and pain with urination that I had to deal with.
COVID added worry and stress
Due to COVID, communication with my urology office was not responsive and I found my unanswered questions and concerns became a constant source of worry and stress. I left multiple messages for the doctor or medical assistant expressing my concern that I was slipping through the cracks. I am not a needy patient and will do my research so when I do have a question I am on point and not hysterical.
To his credit, he listened to my concerns and expressed his own frustrations with his office staff. Since then, I have had prompt attention.
Is losing my bladder inevitable?
I am finding that the thought of removing the bladder is ever present in my mind. What if the cancer recurs with a vengeance and instead of only recurring it progresses?
And just when I am about to start my 1st maintenance treatment, I start bleeding and have to postpone. So the frustration and worry continue.
Am I doing too much? The doctor says that my activity level is not causing the bleeding. Has anyone else wondered if their activity level is a cause of their symptoms?
How do you advocate for yourself?
Have you felt misunderstood as a person living with bladder cancer?