I can certainly sympathize with your feelings. Most of us here on the Forum have been where you are! We welcome you, even though we know you don't really want to join us!
Let me try to help make some sense of what has happened so far.
First, and most importantly, your urologist seems to be following the most appropriate procedure, which is to do one TURB and, after reviewing the results, a second TURB. It is often difficult for the doctor to see exactly what is going on and take enough, or deep enough samples the first time. The second time, he has a better idea of what might have been missed and can give special attention to that. Not all urologists do this, so the fact that yours did tells you that, so far, he is "right on."
Now as for the pathology results. For bladders they are often presented in the way yours were, rather than with the numbers used in other cancers. So what do your results mean? The first TURB report was for "papillary" tumors...these stick out from the bladder lining into the interior of the bladder like little mushrooms or cauliflower stalks. There did not appear to be any invasion into any lower layers of the bladder. HOWEVER, it was "high grade." This means that there were many dividing cells in the specimin, indicating that the tumor was relatively rapidly dividing and thus has the potential to grow...and move into other places...rather rapidly.
The second TURB did indeed provide additional crucial information....the samples provided this time were "low grade"....NOT rapidly dividing and not as likely to spread. It is not unusual to have both types present. BUT the urologist went deeper into the tissue to get these additional specimins and found that the tumor had grown into the next layer of the bladder, the lamina properia. But NOT, apparently, into the muscle. The fact that it had not gone into the muscle is good news.
Now to interpret all of this. The fact that it is "high grade" indicates that it should be treated and stopped before it can go any further. Which is why the urologist has prescribed a series of BCG infusions. This has been shown to be quite effective against high grade bladder cancer. But as you have found out there is currently a shortage of BCG. From what we hear, more should be available in several weeks. Merck is the only provider and has had trouble with production as well as being overwhelmed since the only other company providing it stopped production last year.
A short delay in starting the treatment will not affect its efficacy. But as soon as your urologist can get it, you should be ready to start the series. There is a LOT of information on BCG on this Forum under the topic "Non-Invasive." Mitomyin A has been used as a BCG alternative, although it is not quite effective and has also been subject to shortages. The usual BCG schedule is for treatment once a week for six weeks. Then, about three months later, many patients start maintenance treatments, where you have additional treatments ...for three weeks...every three months until two years have passed. This has been shown to increase the effectiveness.
I could tell you that you shouldn't worry, but that wouldn't be very realistic! Just know that you seem to be in good medical hands and you have a diagnosis that can be very treatable!
Sorry to be so wordy, and I hope I haven't overdone the explanations. Please ask any questions that you might still have...and I know you will have many.
Best of luck to you
Sara Anne
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