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Advice on cath and immunotherapy
Just had a 12 mm cath for a week after biopsy. Waiting for cscan tests to see if it spread. Doc said it’s early stage but highly aggressive. So far 3-6 weeks of BCG is planned a week from now, but may depend on cscan/x-ray 3 days ago. No news, good news? Anyway, I have pretty low immune system already. What is the BCG like? Not sure I can deal w/ the cath again planned after BCG. Felt just like passing kidney stones, very hard to sleep as it pulls causing more pain. 10 mg Ketorolac was prescribed for pain, but only helped a bit. Still hurts urinating a week after cath removed. My doc does not have the best bedside manner and hard to talk to. This initially started w/ him wanting me to start viagra, but I said no, and he decided to order tests. I have no family left, and witnessed my fiance go through a nightmare and dying within 5 months of diagnosis. I wish now, we chose hospice. Thanks for listening!
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2 Replies
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Thankyou for replying. I only got this news on the 8th, a week after the biopsy. Just waiting for cscan results. The only bladder cancer #’s I have seem to be insurance related…ICD-188.9 and ICD10-C67.9 . I got 3 options including bladder removal and I chose BCG. So far a cysto is planned 2 months after BCG, but the 12 mm Foley cath is on the 9 level of pain w/ ineffective pain med. Not sure it’s worth it. Thanks again :-)
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A couple of things. First, your diagnosis is not BAD. High grade, but obviously non-invasive or the urologist would not have suggested BCG. I assume that you have do not have one of the relatively rare cancers. What does your pathology report say? You should have a copy of this for your records.
Second, BCG is administered into the bladder via a smaller catheter than your cystoscopy and is only in place for a minute or two.This is done as an office procedure…and then you go home. BCG is a modified tuberculosis bacterium that was initially developed almost a hundred years ago as a potential anti-tuberculosis vaccination for children. In cases of bladder cancer it is instilled directly into the bladder in the hopes that it will stir up the body’s immune system to fight the cancer cells. Yes, it does have side effects since it is intended to stimulate the immune system to reject cancer cells trying to form in the bladder lining. You will no doubt be uncomfortable for a few hours after administration….urgency, burning, maybe passing some blood clots. By the following day you should feel almost normal. For me one of the worst side effects was fatigue which is very common. The side effects do increase with additional doses, but this is what we WANT to happen; it indicates that the immune system is kicking in. If the side effects become too uncomfortable the dose can be reduced significantly and is still effective. The side effects are minor compared to what patients who receive traditional chemotherapy undergo.
For high-grade bladder cancer, in the US, the usual regimen is 6 weeks of one treatment per week, then several months off. This is followed by a “maintenance” regimen…usually one dose every week for three weeks for about two years. This maintenance protocol has been shown to significantly increase the effectiveness of BCG in high grade bladder cancer. This is considered the “standard of care” in the US.
BCG can be life-saving in cases of high grade bladder cancer. I am now almost 11 years out and still clear!! There is a LOT of anecdotal information on BCG here in the Forum. Go to the top of this page and use the “Search” function. Keep in mind that people who have issues with it are much more likely to post their issues than those who have no problems at all!!
Please feel free to ask any questions you may have, and good luck
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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