I am a five-year lung cancer survivor who just learned incidentally a month ago (on my last clear PET scan; they ran one because they erroneously thought they saw some growth in my lung) that I have a second type of cancer in my bladder. I'm pretty overwhelmed by having to go through this a second time and am feeling a little uneasy that this could be the beginning of something even bigger. My urologist/surgeon found a 2 cm papillary tumor during a cystoscopy and I experienced my first TURBT about three weeks ago... I'm still having pain at the base of my urethra when I urinate, feels like a short spasm when I first start, but then eases up.
Monday my doctor informed me my tumor was Ta stage, but high grade. The pathology report doesn't convince me that it's a Ta and I'm wondering if it's really at the T1 stage and because she knew I'd be a little panicked that it was high-grade, she played it down a little: The report reads: "No definite lamina propria invasion is seen, but some areas of paradoxical differentiation are observed suspicious for superficial lamina propria invasion; however, this tissue is too cauterized to identify any definite invasion. In any case, no deep invasion is seen."
Because of the grade, I'm scheduled for 6 BCG treatments beginning September 12, and then maintenance doses, I think she said, once every month for three months (or one time every three months, can't remember)(?) My understanding is that not everyone responds to these, and am wondering if any members of the forum might know what the percentage of success is. My doctor also agreed when I asked her that high grade tumors will sometimes progress to muscle-invasive ones. I'm wondering how this can happen, if I'm getting a cystoscopy every three months... does this mean it will progress faster between cystoscopies? If so, I would think a cystoscopy every two months would be more effective even though they're certainly no fun.
Right now I'm flashing back to when I was first diagnosed with lung cancer and feeling pretty scared. I've started seeing a therapist to deal with these anxieties all over again, but it's hard to contain the uncertainty. Will be feeling like I have a handle on the disease when I go to bed at night, then wake up the nest morning, remember it, and have this feeling of doom. Is it unusual to have a solitary high grade superficial tumor? What can I expect from the BCG treatments? I have Wednesdays and Thursdays off, will be having them Wednesday ay 8:30 a.m., will I be able to return to work and be functional by Friday? Also, very important: how much do they fill your bladder up during the procedure? The most uncomfortable part of receiving the mitomycin tx after the TURBT was how full my bladder was... they had to keep giving me Fentanyl because I could barely handle the sensation that my bladder was about to explode! My doctor has assured me Monday there won't be as much fluid involved in a BCG treatment, and the catheter won't be clamped off, but, being a nurse, I'm not sure if I trust her 100% of the time. If my bladder is as full as it was after the surgery and the cath is not clamped, I'm definitely going to have a hard time holding it in...
Any advice or support you guys could give me would be much appreciated. I've kind of sunk into a depression here and am trying to dig my way out of it; felt like after receiving chemo and radiation for my lung five years ago, I'd paid my dues and was very lucky and I could go on with living a normal life. Everything's happening very fast and I'm trying my best to adjust to it all. I'm very glad forums like this exist...
Doug
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