I've just spent two hours browsing the forum and appreciate that so many people are willing to help others with their questions and concerns. (Reading replies from Sara Anne had a calming effect on me on a day when I've been stressed to a breaking point.)
I'm 57, female, live in Delaware, and was diagnosed last July after passing blood in my urine. The only symptom I'd had before that was a need to urinate more frequently. Not so frequent as to be troubling, and I passed it off as age, seeing as how I have friends who have complained about their "shrunken bladders" as they get older. But the blood that evening terrified me and it was all I could do not to head to the ER that instant instead of waiting until morning to call the doctor.
(I didn't actually even have a doctor, due to my previous one having relocated out of state. I'd been notified by the Health System that I'd been reassigned to a different office, but I hadn't been sick or had any issues in the two years since that notification. I tend to be doctor-phobic and stay away from doctor's offices unless I can't avoid it. I ended up seeing the Nurse Practitioner because that was the only same-day appointment available.)
Urine test, bloodwork, ultrasound, and got a call from the NP saying I had a mass in my bladder and she was referring me to a urologist. I'd never read anything about bladder tumors, but even so I knew 7 cm was a large one.
Went in for a TURBT the following week. Spent the night in the hospital--maybe a precaution because of the size of the tumor, not sure. Pathology came back as papillary urothelial carcinoma, low-grade, non-invasive, pTa.
About six weeks later I had a repeat TURBT (this one outpatient), with the same pathology results. I have both reports and neither mentions CIS. Just papillary, low-grade, non-invasive.
If there was CIS would it be on the pathology report? (Yes, should have asked the doctor about this, but honestly until reading here tonight I wasn't familiar with bladder CIS.)
Six weeks after the repeat TURBT, in October, I started a series of six BCG treatments. I had no obvious side effects from the BCG -- maybe I felt a little tired later in the day, maybe I had to urinate a bit more often, but I honestly don't think I'd have noticed those things had I not been looking for side effects.
Today (six weeks after the final BCG) I had a cystoscopy and it showed four or five small tumors (I could see a couple of the mushroomy-looking ones on the screen until I got freaked out and couldn't look anymore.) I don't know exactly how small, just that the doctor said they were very small compared to the original big one. I'll be having another TURBT in two or three weeks.
My reading here this evening has indicated BCG is generally used for higher grade tumors and CIS, and not so much for lower grade. I wish I'd read this before my doctor's appointment, because I'd have asked about that. What IS done for low grade tumors? Just removing them during the TURBT? Does the fact that I have these small tumors mean that the BCG failed? The doctor said when we get the pathology results from the next TURBT we may need to decide whether to treat the cancer in the most aggressive manner possible, which means bladder removal. It freaked me out that she said that and my brain couldn't come up with anything intelligent to ask.
Now my brain is saying "Can the doctor see CIS during the cystoscopy, and is that why she started talking about agressive treatment?"
For some reason I'm far more nervous and upset today than I was when I had the initial diagnosis and surgery. Like I'm doomed.
And I keep reading about how cystectomy should be done at a renowned hospital like Johns Hopkins or Penn, but that will not be possible under my present insurance, I certainly can't pay out of pocket (financially struggling divorced mother of teens), and so I'm even more worried.
I'll much appreciate any responses, and I promise not to write a novel next time.