I am back to this lovely forum to, see if anyone has had similar or just general advice. Following a clear cystoscopy in March and three maintenance BCG treatments, bringing my total so far to 12, I have just had a clear flexible cystoscopy which was very good news. However, I did tell the consultant that I have been experiencing a lot of bladder and pelvic pain of late. His response was I think we should stop the BCG then. I must’ve looked surprised because he said, what is the point of having a bladder if it is going to cause you pain and problems. He then went on to say that BCG does cause this in some people. His suggestion was to see how I go and if the pain does not resolve, along with the frequent urination, that I just do nothing and have a cystoscopy in six months time. That frightens me as it just seems so long. When I asked him what the Possibility of it spreading was he said six months is a safe period. I am very confused and although I am going to wait to see how I feel over the next few weeks, as the next BCG treatments are at the end of June, I do not feel comfortable with Just waiting six months particularly as mine is a high grade cancer with C.I.S. he did say that I may be fortunate in that the BCG treatment has done its work and that my bladder was extremely clear, but we all know unfortunately that this cancer has a habit of reappearing. Has anyone else been in this position? I can manage the pain with painkillers but I did have a couple of weeks where it was quite severe.
Many thanks in advance x
