Mom just had TURB and I have questions

Hi Kim,

Maintenance is most often reserved for CIS, when used at all. It's confusing because different experts feel differently on the subject of how long to do BCG, how many treatments is ideal amount, and whether to continue maintenance in case of high grade and/or T1 tumors.
Here is an algorhythm developed by US and European experts, on the current thinking regarding the best use of BCG:
www.bladder-cancer-course.org/sites/05_01_01.html

Hey,

I don't have an answer to your specific question, but, your Mom and I are in the same boat with our stage and grade. (Predominantly low grade with high grade focal). I've had 12 BCG's and am going for cysto on July 11th.

Please keep us posted. Your Mom's (and mine) risk would be a lot higher than someone with just low grade, I would think. At least, that is what I was told by the Docs.

Your friend,
Rosemary

Hi all, it's been a while and I just wanted to let you know that my mom completed five BCG treatments six weeks ago and is going for her first follow up scope on the 12th. Her local uro told her to stop at five because her tumor was Ta and predominantly low grade (although there were a few high grade focal areas). I would have liked her to do all six, but she was comfortable doing just five. My question is this. Has anyone out there had a Ta, low grade tumor and not done BCG maintainence? If so, how did it go? I know my mom is leaning towards not doing more BCG (eventhough she tolerated it very well), and I feel the opposite, I think if she is not having side effects she should do it as long as she can. Any thoughts?

Kim

Kim,

I've been looking for answers about delay in initiating BCG treatment, but can't come across anything.  I'm pretty sure that Wendy would have an idea about the risks of delay.

To be honest, I wish that the Doctor had given the Mitomycin C.  (But then, I don't think you need to be riled up any more than you are against this Uro.)  Surely, though, on the positive side, how do you know that this Doctor won't turn out to be right?

I agree that the treatments should be put off until you get the MRI results. Like my Doctor told me, there are 6,000 different things that can occur in response to BCG's.  You don't want to muddy up the picture in diagnosis of any other medical issues.

Good luck and I hope someone comes up with an answer to your question concerning delay of treatment.

Your friend,
Rosemary

Well we've got her in with a new uro at Sloan, but won't get an appointment until next week. In the meantime the gyn at Sloan wants to biopsy the mass found in the area of the uterus. The old uro at Sloan says that the lesion IN the base of the bladder that has shown up on both the CT scan and the ultrasound is nothing to worry about. I'm not totally satisfied with that answer, thus the change in docs. I am now worrying about the delay in starting the BCG. She had her TUR on 3/19. She was directed to begin BCG next week sometime but now the uro is saying to hold off until after the gyn does the biopsy. He won't even schedule that until the MRI report comes back. She has her MRI scheduled for tomorrow so we should get the report on Mon. Who knows how quickly they can get her in for the biopsy which I am guessing is done laproscopically? I guess my question for all of you is how long did you wait between TUR and beginning BCG? She may be a month to six weeks out from the TUR by the time she actually starts (assuming she does start.)

Kim

Kim,

You are doing a really good job at keeping your facts straight.  

I'm just curious though.   The CT scan showed a mass ON the bladder as opposed to IN the bladder?  And how do they know that it is BC in the lymph node without a biopsy? Also, wasn't a chest X-Ray made before her TUR?

I cannot help but think that if the Sloan experts think there is a chance of a more invasive type of BC in there, that they are not moving more quickly.

I also am surprised that they are not returning your phone call.

Hang in there.  You don't have all the pieces yet.

Your friend,
Rosemary