Spoke to the local uro today and explained what the Sloan uro told me about the path report. The local uro is now satisfied with the path report. He said that it was unclear to him from the report if the lamina propria was in fact clear -- he said that he is not familiar with the way Sloan does their path reports and it differs from the way his are done. He said that if the Sloan uro says the lamina propria is clear than we can rest assured there is no invasion in the muscle. So we feel much better now about this and we are setting up the BCGs finally!
Just want to chime in that getting a bit of muscle specimen beneath the tumor bed is considered the whole point of biopsying something. I can understand the dr.'s defense but in truth it's plain sloppy. If it was a high grade tumor a prudent doctor might re-TUR, I guess the local uro figures the BCG will take care of things in any case.
It's been a rough and confusing ride so far and the doctor at Sloane might have been fed up but should have shown more understanding to you and your mother. Oh well, it's not a perfect world that's for sure and we're all human.
Thanks for all of the reponses -- they are making me and my mom breathe easier. Of course with the way these past few months have been going we are cautious not to get too comfortable with any sense of relief because you never know what is lurking around the corner! Will we always feel this way? Perhaps once this needle biopsy is done this Friday and we find out what is in her "vaginal vault" (what a strange term!) we will feel better. I'll keep you all posted.
Looking at your pathology reports I see that your path alsostates no muscle in the specimin. My understanding from the uros is that they need clear margins. The tumor can not skip the lamina and be in the muscle. I also did not have a returb because the desease was all low grade. I also had a second opinion on the pathology. It seems to be a debate inverted papiloma vs. tlow grade t.c.c both doctors decided that the tumor was ta. It has almost been a year and I have not had any new tumors. It is hard to compare paths with other people. No two tumors are exactly the same.
Thanks you guys for weighing in for Kim. I wanted her to hear something that was not worse-case secenario.
Alyssa, my local paths thought that I had inverted papilloma, it seems that inverted and T1 G3 look very similar under a microscope. The local paths were being cautious and sent the specimen to the University Medical Center at UNC for a 2nd opinion and they decided that it was not inverted, it just :o looked inverted...
Everything that this Sloan doctor is telling Kim is completely adverse to my own experience and what my Doctor explained to me about why to do a Re-TUR.
I just don't know. I still don't get it.
But thanks for weighing in on the positve side.
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
Kim....If the tumor has not gotten past the lamina propria it is not into the muscle. the path report.."not identified"...means there was no muscle in the sample. Good lord you don't want them to dig into the muscle....they get the tumor and its margins. No muscle is good.
I think you're right on schedule. I think you should go ahead with the needle biopsy this week. If the doctors at Memorial Sloan don't know what they're doing we're all in big trouble. I think you probably read sooo much legaleze (is that a word?) that you naturally are looking for the loopholes in these reports. I know your first doc there wasn't exactly Mr. Personality...and many of these surgeons aren't. I personally hated my experience at Memorial Sloan...and my surgeon wasn't big on words....but i couldn't argue with his credentials. He got what my first uro didn't and all my urine tests were clear of cancer cells for 4 months. Who knows maybe it wouldn't have come back but the odds were at T2 and into the muscle that it would and with a vengence. (I guess thats back when they were grading them.....i was also part of a trial for the blue light i found out)