After getting a second-opinion from a consulting urologist, I’ll be headed for surgery probably sometime next month for, in the words of my urologist, “cystoscopy, bladder/diverticula biopsy, stone evacuation, left retrograde pyelogram, possible ureteroscopy/biopsy, possible stent”.
In the meantime, and just minutes after receiving that message confirming my decision after the second-opinion that we will be proceeding to surgery, I’ve been reading the results of the computerized axial tomography scan I had two weeks ago today.
By rule, I am not a flapper. Some autistics have “flappy hands”, for reasons ranging anywhere from happiness to stress. Whatever their form, stimming is self-regulatory behavior, and I have my stims, just not flapping.
Or, I should say, I have very rare flapping. I flap, but never from happiness or excitement. I flap from intense, personal nervousness.
So, yes, I spent much of the time flapping while reading the scan results, even when I was going through the parts about all the various organs which are reported to be normal. Imagine, then, as I kept googling medical terminology, how I felt as I kept getting closer to the diagnosing radiologist’s “impressions” at the end of the report.
Probable posterior left lateral primary bladder transitional cell carcinoma malignancy measuring up to 3.9 cm centered along the narrow neck of the left lateral bladder diverticulum. Left lateral bladder mass involves the left UVJ and potential left distal ureter. Recommend follow-up urology consultation and cystoscopy.
What I spotted first was “carcinoma malignancy” and only after googled for “transitional cell” and then noticed the “probable”. If ever there were flap-worthy words to read, these would be them.
To be clear, the potential for cancer was known. It’s why, even before we officially confirmed that we’d be headed to surgery, it was understood that they’d be performing a couple of biopsies. This was underscored during the second-opinion conversation, where the consulting physician said that even absent any of the other bladder matters, he’d definitely biopsy some things.
Moderate bilateral iliac chain, pelvic sidewall, and inguinal lymphadenopathy concerning for potential metastatic disease of bladder malignancy. Technically not enlarged, though conspicuous in number, retroperitoneal lymph nodes which could reflect early metastatic disease. Given the mild splenomegaly, differential would include a lymphoproliferative disorder such as lymphoma.
Almost immediately, I googled “lymphadenopathy”, and then “metastatic disease”. While I did also google “lymphoproliferative disorder”, I know what “lymphoma” means.
Posterior left lateral bladder diverticulum measuring up to 7.7 cm containing multiple internal calculi measuring up to 0.7 cm. Posterior right lateral bladder calculi measuring up to 0.2 cm. No ureteral calculus or hydronephrosis.
This is what started it all. Or, rather, the intermittent blood in the urine is what started it all. You know, the intermittent blood in the urine that previous doctors, two years ago, never followed up on. It’s taken me some time to find a primary who seems to be actively engaged.
Bladder stones, confirmed by the cystoscopy two and a half weeks ago, but primarily trapped in a little pouch pushing out off the left side of my bladder. Elsewhere in the report, it specifies that the neck of this pouch is a mere one centimeter across, which explains why my urologist said it was tricky to get in there.
So today I realized that I do, in fact, flap my hands in a stereotypically-autistic fashion. It’s just that I only do it when nervous. When very nervous. Like when reading about how you might have cancer.
For now, I await a message back from my primary, whom I’ve asked for a rundown on these results. For now, I await a selection of surgery dates from my urologist. For now, I write about it all.
For now, I flap.