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← Return to BCG maintenance or periodic cystoscopy?
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BCG maintenance or periodic cystoscopy?
Bladder Cancer | Last Active: Aug 6 12:29pm | Replies (24)Comment receiving replies
Once my every 3 month cystoscopy showed no tumors, my BCG treatments were stopped. I have not had a recurrence of tumors following a 6 month, then 1 year, now another year (upcoming in November) cystoscopies. I recognize that everyone is different. But if you are continuing to monitor with cystoscopies, and given your side effects, I understand why you woild consider stopping for now. I hope and pray that whatever process you choose keeps you NED.
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@wifey9
Here’s a recap of where I am now in this adventure.
At 79 years old I was initially diagnosed with a single high grade NMIBC which was removed via TURBT and followed by BCG treatments. One month after surgery I began a six weekly instillation of 50% BCG. Initially no side effects except temporary burning and urgency but by treatment four I was getting flu like symptoms ( body aches, headaches, nausea, fatigue etc) which lasted for 24 hrs. Regardless I finished the six treatments and three months later had three more again with progressively worse side effects, often lasting 48 hrs. Six months later I had three more treatments and had a reactive arthritis episode on the last treatment. This was a spontaneous ( within 48 hrs of the last treatment)occurrence of arthritis on my right hand, hip and knee. While my urologist wasn’t convinced it was reactive from the BCG, the rheumatologist I saw was convinced it was. We stopped the BCG treatment program at that time and opted for periodic cystoscopy to evaluate my condition. I’m cancer free at present but my first 6 month evaluation is due in September, so I’m anxious to see if I’m still NED. BCG is the gold standard and I wish I had been able to continue treatment. I’m not sure what options will be available to me if they find tumors at my evaluation. Will keep u all posted.