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New to forum: Urologist wants to start Maintenance BCG with my Dad ...

12 years 11 months ago #7096 by Nean
Thanks, Rosie, for the clarification. My parents were still living in California when my father had his first TURB in November of 2004. At that time, his urologist didn't even tell him it was bladder cancer! As far as I know, he did not have any instillation of Mitomycin C after surgery, but I'll have to check his records to know for certain. Toward the beginning of February 2005, he started on the 6-weeks of BCG. I didn't notice any side effects because I was only out there visiting them for a few weeks. I came home before the six weeks were over.
In May of that year, my Mom and Dad sold their house and moved here to be closer to me, as I am a stay-at-home mom and the youngest in the family. (My other siblings all lead much busier lives than I.) They both came weakened and sickly! They had pneumonia! Both my mother and father were so thin! My husband couldn't believe the difference in them. I know moving is difficult for anyone at any age, but I just attributed all of the illness to the stress of that. I never thought much about the BCG treatments at all ... but now I'm beginning to wonder.
At any rate, his California urologist told him to be sure to see a urologist here after "he was settled." Well, time for settling can vary with people and, for 80-somethings, believe me, it takes awhile. Because his doctor never told him of the urgency, he didn't seek a urologist until Thanksgiving, when that night he noticed blood in his urine.
Our doctor recommended his current urologist, who performed his first TURB here in December of 2005. While it was still good news that none of the tumors had invaded the bladder wall, there were many and he had to stay in the hospital for almost a week ... then came home with a catheter for about two weeks. It was pretty tough. This was a pretty tough time all around, as I had requested his files from his California urologist and, while copying them, I saw the diagnosis: Superficial Bladder Cancer ... this was the first we had ever seen (and hadn't heard) those words!!! We were in shock! We couldn't believe the California urologist hadn't said anything ... and also that he had not stressed how important it was to go in for regularly scheduled cystoscopies! We felt helpless that we hadn't known the truth.
Well, after that surgery, my Dad started on a regime of going for cystoscopies every three months. He had another TURB in July of 2006 ... then one in January of 2007 and now again just two weeks ago. Each time, he has remained clear of tumors at his 3 month cystoscopy, but more have grown by the sixth month.
Reading your experiences to my Dad has really helped him step out of the denial of the whole "c" word. He has been living as if he has had a dark cloud over his head for the past two years.
Somehow, this last surgery went so well. He recovered very fast and is the most cheerful I have seen him in ages. He is still very weak and tired, though ... which made me start to wonder about how good the BCG would be for him (especially as it is a three-year plan). I have tried to read a lot about the treatments so I could present him with as much information as possible. Also, since he had the worst tumors after BCG (even though it had been too long a time between cystoscopies), I did start to wonder about how effective it really would be ... then when I discovered the articles on age affecting the usefulness of BCG, I really started to have my doubts.
Anyway, I apologize for rambling on so! I don't have his files with me, although I did make a copy of them for him and they are in his filing cabinet ... so I can't tell you exactly what the stages and grades of the tumors are/were.
Would the use of Mitomycin C have just as much a chance at working even after all these TURBs? Or is it only effective after the first one?
Thank you, again, for all your knowledge and advice!
Kind regards,

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12 years 11 months ago #7093 by Rosie
Nean and all, there may be some confusion as to Mitomycin instillation within an hour of TURB as compared to getting Mitomycin weekly treatments rather than BCG weekly treatments. Some urologists offer a choice of 6 weekly treatments of BCG or 6 weely treatments of Mitomycin but that is different than the one time instillation within an hour of TURB which is what Rosemary and many others have had in recent years. That was not the protocal with my prior TURB's but wish it had been. Did your father have any chemo instillation immediately after his two TURB's? Is his bladder cancer papillary transitional cell carcinoma? If it is. and he has not had one instillation of Mitomycin within an hour of TURB, I suggest that as a way for him to proceed rather than going into the arduous 6 week BCG weekly treatments at this point in his journey. Rosie

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13 years 9 hours ago #7072 by Rosemary
With my two doses of Mitomycin, I only had to hold it in the bladder for one hour. The first dose which was after the first TURB, I could not complete the full hour.

My second dose was after my second TURB and since I had asked for an epidural holding the Mitomycin was not at all a problem. I simply couldn't feel the pressure.

Please keep us posted, Nean.

Best regards,

Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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13 years 13 hours ago #7061 by Nean
Thank you so much for all of the valuable input ... and the support! I have to say, it really helped me a lot to look at your messages this morning before we headed to the urologist's office. Having some support and information helps my confidence level. My Dad and Mom and I were all ready for a battle, but the doctor's attitude was not at all combative. He said he only offers courses of treatments that he would recommend, but obviously will yield to what the patient ultimately thinks is best. It was interesting, as I was prepared to defend our position ... kind of like when I was ready to take a final and then was told I didn't have to take it ... there's relief, of course, but also a bit of a let down if I'd studied very hard!
The visit was a brief one. I was disappointed the doctor didn't have the pathology report back yet (or at least it wasn't in my Dad's file yet), so he couldn't discuss much. :-\ We go back again in four weeks.
I am going to read all I can on Mitomycin C instillation. Truthfully, as Patricia noted, I'm not sure my Dad could even make it one hour, but that might be a possibility. Two hours, I know, is just out of the question.
My sister watched the movie, "The Edge" with my Dad and now uses the metaphor of "kill the bear" for him to focus on when dealing with all of these issues. I pray; I take a deep breath; I focus ... and then I'm ready. Thanks again for the replies. You really helped me "kill the bear" this morning.

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13 years 15 hours ago #7054 by Patricia
I do wonder about the incontinence issue though...if he can't hold the BCG..he won't be able to hold the Mitomycin either and both are caustic agents outside the body. I'd definately get another opinion........Pat

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13 years 22 hours ago #7049 by wendy
You're right about the latest info saying BCG is less effective on those over 80 yrs. Rosemary's question is also a good one...did the BCG work? I'm thinking maybe the recurs were less serious than the original tumor, thus the doctor feels it's working...maybe?

I think you are doing the right thing by questioning the approach and looking for another opinion from an expert.

A family member with bladder cancer, she is 88, had the Mitomycin instillation after her last recur of a high grade tumor and it kept her clean for a long time. She found it much easier than BCG...it is an option that deserves discussion.

Good luck with things,

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