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

12 years 11 months ago #7403 by Nean
Hello, Wendy. Thank you for your valuable input. This may be why the urologist has not suggested the use of Mitomycin C before. The surgery my father had in Dec. 2006 was pretty extensive. I do remember the doctor talking about how he had to thin the bladder wall in places to remove the all tumors. I really am thankful for this forum and the use of the internet! How I wish the doctor would take the time to explain various aspects of surgeries and treatments and why he does or does not offer the different things. Although I feel he is quite a capable doctor, his waiting room is packed all the time. We get to talk more with him during a post-op consultation than when my Dad has an appointment! *sigh So thank you very much!!!
Cordially,
Nean

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12 years 11 months ago #7400 by wendy
Dr. Lamm is a fantastic person and supporter of the bladder cancer community and has been answering our questions for years, yes he's a great doctor.

Mitomycin would be used after a tumor is removed, to delay recurrence with the benefit lasting for up to about 2 yrs. The risk is instilling it into a bladder that may have been perforated by a deep resection of the tumor, especially if it's on a thin bladder lining. If it leaks into the system it can be extremely toxic and even deadly. Doctors know about this risk, which is biggest with elderly women (who have the thinnest bladders), but my 88 yr old second cousin had it done and it helped. It caused side effects for a day or two, but not worse than BCG.

Good luck,
Wendy

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12 years 11 months ago #7373 by Nean
Dear Rosie:
Thanks so much for asking :)! My Dad is feeling pretty good right now. Coincidentally, just this morning I received a reply from Dr. Lamm. This is it:
BCG for 80 Year Olds and the Risk of Incontinence
Dear Friend,
You are very well informed and are obviously taking great care of your
Dad. Keep it up.
I would personally not repeat a second 6 week course. If these are low
grade tumors, chemotherapy post resection could be the best approach. It
does sound like he is one of the many octagenarians who are resistant to
BCG. Dr. Konety at UCSF believes that this could be related to the effect
of low testosterone on the immune system. If he has no prostate cancer
and has a low testosterone, replacement might help both his mood and his
bladder tumor control.
Don't worry about spilling BCG. Unless someone is immunocompromised or
has an open wound, BCG is not contagious.
Best regards,
Don Lamm, MD
I thought it was exceptionally kind and considerate that he would actually answer me!
I am still trying to do some research on the Mitomycin C and if that would be a viable treatment for him. If you have any other links with more information and risks, etc., I'd be very grateful. Again, we won't know anything more about the pathology until his next office visit (8/31). I'm anxious to know what the report may reveal.
Thank you so much for your continued support.
Cordially,
Nean

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12 years 11 months ago #7370 by Rosie
Nean,

Any more info on your dad? How is he doing? Rosie

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12 years 11 months ago #7100 by Nean
Dear Rosie:
I'm so glad you had your daughter with you for the surgery, too! Yes, every time my father has been in the hospital for the surgeries. He has been under general anesthesia each time. Only the first time did he have to stay for several days (I think it was almost a week) ... since then, though, the surgeries seem to be a couple of hours and then he's in the recovery room for a couple of hours and then he's sent home. I actually feel as though the surgeries are improving (or his view of them is improving!), as he only had to come home with the catheter the first and second times. The other two surgeries seemed faster and he seemed much more "with it" in the recovery room.
It is so important to have an advocate when in the hospital. This, I think, is important for any age person, but particularly the elderly. I have seen so many patients dropped off by nursing-home vans. These sad people have no one to turn to and no one to speak up for them. They often seem overlooked and ill-treated. At one of my Dad's surgeries, there was an old man who had come by himself. He had been dropped off by an attendant. We happened to see him in the waiting room earlier that morning ... then we saw him again in the recovery room when we were in there with my Dad. Nobody seemed to be paying him any attention at all. My sister spoke to a nurse to get the old man something to drink in the recovery room ... and they almost forgot to give him his bag after the nursing-home attendant came to take him away. He barely had time to wake up and he was whisked off.
This last surgery, as the nurse was preparing my Dad to go into surgery, she said, "he's in for his prostrate, right?" And I said, "NO! It's his bladder!" The doctor had signed off on the permission for the prostrate! My Dad had signed it, too (I wasn't there when he did) ... and they were about to wheel him in for prostrate surgery! I'm sure they would have caught it somewhere along the line, but I was awfully glad they caught it there! The nurse went quickly away to find the doctor and then came back with a new permission with the transurethral resection of the bladder on it! YIKES
Anyhow, I will try to find the original records to find out his stage and grade; however, I realize that may have changed ... though the doctor always indicates it's the same story each time. Lots of small growths and clusters of growths. They are always sent out to a pathologist. We should have the pathology report from the latest surgery (I'm hoping) by the next visit in four weeks (Aug. 31). Until now, I have to admit, I've not really paid any attention to the details of exactly what the growths were. I felt as long as they hadn't invaded the bladder wall or spread anywhere else, we were in pretty good shape. Wow. So much for me to learn.
Thank you, again, for all your help!!!
Kind regards,
Nean

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12 years 11 months ago #7097 by Rosie
Nean, I am glad your reading your dad my experiences helped him step out of the denial of the whole "c" word and hopefully not feel he is under a dark cloud and alone. Would you check with him and/or his records to see what type and grade of bladder cancer he has and let us know. Were the TURB's he had done in a operating room setting while he was asleep? Sometimes newcomers become confused with the words of tumor removal and rather than having a TURB they had an office biospy or fulgeration. Do you know if his recurrences were fulgerated in the office or each time he was put to sleep? Often times, if the urologist has the set-up and is not restricted by protocol set by their institution, they will routinely fulgerate anything seen at office cystoscopy. So two questions before I can best tell you what I/we recommend. What was the type and grade of his cancer? Was the TURB's in an operating room setting? Were the recurrences sent to pathology? I am sure it is very therapuetic for them to be near you, their baby daughter. My baby daughter came to my first TURB and watched over me during preperation for surgery and walked beside my guerney into the operating room. During the pre-op she called it to the nurses attention that the intervenous hookup she was about to start up was not attached to the liquid bag. It was so soothing to have her there with me. Rosie

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