Hello,
I was recently diagnosed with bladder cancer, and will have my bladder, prostate, and surrounding lymphs removed soon.
It all started when I urinated blood ... a lot of it... one night at work about 1.5 years ago. I happen to work at a hospital as a medical scientist. When this first symptom occurred, I immediately excused myself from work and went downstairs to the ER. Naturally, they wanted to take blood samples and send them to the labs for testing. However, I objected about using my name as I work in the very lab that they will send my blood. I also know and went to school with people in all adjacent labs. Hematology, Chemistry, Microbiology, Immunohematology, Immunology...I know employees and/or have supervisors in each of those labs. They wanted to send my samples there, yet I had no clue what was wrong with me.
As a clinical scientist, I know that we are often familiar with a person's diagnosis based on testing even before the physician. I was scared that my diagnosis would be professionally embarrassing or reputationally harmful...as in, STD or similar. I simply requested that my name be masked from the sample (a common practice for VIPs that seek medical help, i.e.: political figures). My request was denied. I waited hours to speak with an executive clinical coordinator, but he denied my request as well. I was denied medical attention with a masked name, and told to seek help elsewhere if I wanted to remain anonymous.
I went to another ER, with no professional connections, who then ran an MRI. All seemed Ok as were basic labs, but I was recommended a follow up with a Urologist and to have a CT scan. I called my insurance provider to determine the cost of seeking this consult outside of my employer, and was told, "Seeking medical treatment outside of your employer would cost you thousands of dollars and would be foolish". So I didn't seek a Urology appointment due to potential professional embarrassment, and a foolish hope that it would all go away.
Well, it went away. I stopped peeing blood for a bit, but it came back a few weeks later. It would last an evacuation or two and be gone for weeks. This went on for a year with the hematuria slowly getting worse and lasting a bit longer. The symptoms then, after a year, advanced rapidly. I was peeing black flakes of material (skin?), and pushing out clots. I was so distraught and desperate that I finally caved and scheduled a Urology appointment at my work. I swallowed my pride and potential embarrassment, and allowed my samples to be tested by the very people I work with daily.
Long story short, I'm scheduled for surgery in one month. Of course, everyone at work knows I have cancer. I lament that this wasn't caught immediately, and I feel angry that my masking was refused as well as my pride that prevented me from allowing peers to diagnose me. I wish things were different and I feel so dumb.
Now I have to choose between wearing a piss bag, or getting a neobladder that may or may not work correctly. My surgeon is pushing the bag as the better option. I have no clue which to choose.
I'm 40 btw, and could use some advice. Thanks for reading.
