No Diagnosis? ADVOCATE!
APPOINTMENT PHONE CALL TO DOCTOR'S OFFICE**Ty: Hi, I need an appointment with a urologist, please.
Clinic: You can’t see a urologist until you see your primary care doctor (PCP).
Ty: Okay. I think this is urgent. When can I see my PCP?
Clinic: Your PCP’s first available appointment is in two weeks.
Ty: (after a pause) Okay. I’ll wait.
That was the moment I did what many people do—I waited.
I had noticed a small, painful spot under the skin, that seemed very firm.
That reddish spot is why I called my doctor’s office. What followed wasn’t healthcare; it was process. Patient vs The System. The system referred me to my primary care doctor instead of the Urologist I needed. Then I waited, weeks went by. Finally, a five minute PCP in-person appointment so I could be referred to Urology.
Then I waited, again, for weeks. Another short appointment—I was given a topical lotion, that caused a terrible burning pain. Another appointment, I was given catheters (long plastic rods) that had a steroid medication on them. I was told to put these inside my urethra. I started realizing treatments can be as bad as, or worse than what’s being treated. At home, I barely got the first (of many) catheters in (about an inch) and started bleeding profusely. Scary and painful stuff.
Then the Urologist left the clinic and moved away. I had to start over, find a new Urologist. The "Uro department” went from three to two doctors. Request after Uro request, this turned into months—I even tried to escalate up the system so I could get a Urologist appointment. I tried Patient Services. I tried! And I waited. Each step felt procedural, detached from the reality that something in my body was changing quickly.
Long before I had a diagnosis, I knew something wasn’t right. Rare cancers don’t announce themselves loudly. They don’t trigger alarms or urgency. And when answers are slow, vague, or deferred, advocacy stops being optional—it becomes self-preservation.
This post is about what it means to speak up before you’re given permission to worry. I will talk about why action matters even when no one has given a medical name to the thing growing in your body. This blog is about how waiting—quietly, politely—can cost more time than you think you have. PSCC moved quickly, my decisions on how to get an accurate diagnosis were my responsibility and no one else’s. I had to take charge and take action.
What I learned:
PSCC doesn’t wait politely. In my case, the cancer progressed while appointments were delayed—moving faster than the process meant to identify it. I recently heard about men having PSCC for years before having real problems began, but mine only needed a few months to get to Stage 3.
Warning - real life ahead… My cancer started under the skin and moved to the surface. I have heard others had their cancer start on the surface and move deeper. Either way, once invasive, PSCC has a known pathway to the inguinal (groin) lymph nodes, sometimes within months. Eventually I had 19 of these nodes removed, with some being malignant, which is why I needed chemotherapy next. I don’t want to digress too much here, but I want to use my lived-experience so you don't have to go through what I did.
No one ever told me any of this…and yes, I searched the internet and found deeply disturbing images. I don’t recommend that. Get medical help and get it quickly. Learn to be a successful squeaky wheel.