My situation is very similiar to your mom's. I had low grade ta with an inverted growth pattern. The lamina propria was clear and there was also no muscle in mypath. The uro told me that that was o.k. because the tumor has to go through the lamina to get into the muscle. He just made sure to look closely at the scar afterward to make sure that there didn't appear to be any tumor there. I think in your moms case your pretty safe not to have a re-turb. The second doctor did not see everything the doctor at Sloan did. It seemed if the local uro wanted a re-turb that that doctor should probably be the one calling the original surgeon. I also had a mass in my uterus that I had removed one month after my bladder tumor. I to was concerned that it was bladder cancer but it turned out to be a placental site nodule (whatever that is). Good luck to you ans=d your mom in the road ahead.
All in all, it does sound as if you are feeling better about the doctors and their interpretation of tests results . That's good.
Maybe there is something that the Uro is seeing, (that we don't see) , that makes her confident that MOM doesn't need a RE-TUR. Maybe she feels that it will take her whole 15 years of knowledge and experience to explain this to you.
I don't call this a satisfactory answer. However, I can tell that you are accepting this Doctors shortcomings in communication and are feeling better about your Mom's situation.
I say go with your gut.
Glad you checked in,
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
For those of you keeping up with my mom's crazy ride, here's the update. Went to see the local uro today to set up BCG treatments per the uro at Sloan. While there we decided to ask his opinion about everything we had provided him -- all her reports and films. He was very concerned about my mom's pathology report from Sloan. He said that they did not get the muscle during the TUR; therefore, they cannot rule out invasion! He personally knows the uro at Sloan who did her TUR and he was very surprised about this. He advised that my mom not start BCG until we get to the bottom of this issue. I looked at the path report and under muscularis propria it says, "not identified". I called her uro at Sloan who finally spoke to me on the phone. She agreed that the first uro at Sloan did not get the muscle during the TUR, but she was not concerned about this. She said that the lamina propria was clear so they can conclude that the muscle would be clear as the muscle is beneath the lamina propria. She also finally confirmed that the tumor is in fact Ta. She said it is predominantly low grade with a high grade focal area. She said that they no longer grade them 1, 2, 3 but rather high or low grade. (She mentioned that the World Health Organization changed the manner of classification in 1998 and then revised it again in 2004.) She said to go ahead with the BCG. We also found out that my mom had urine cystology done on 3/27 -- one week after the TUR and it came back negative (this was the first we ever heard of this), so that made us feel better. I asked about the blue light scope and she said that they don't use it at Sloan, she said there is no proof that it is better than the white light. Oh, and it turns out there isn't anything in the bladder, however, there is a lesion on the outside wall of the bladder near the other mass in the adnexa, so she will have her biopsy this Friday to determine what that is, but the Sloan uro says she is almost certain it is not blc.
So, that's where we are. She also told me that we need to start trusting her and she got pretty condescending telling me that I have some knowledge, but not enough and that's what's causing problems. She said, "It's like when I deal with my accountant -- I don't know about investments, so I let him make the decisions." She then went on to tell me that she cannot expalin to me all that she's learned in her 15 years of treating BC in the short conversations we have. I was not going to get into a war of words with her, but I wanted to remind her that this was the FIRST conversation we had! I have been sending messages back and forth to her through her nurses and never really getting clear answers. If she or the first uro had sat and explained everything to us as she did today -- perhaps we would have had a little more trust. Not to mention, the first uro did miss the uterine mass, so that did not engender a lot of trust from the start! Anyway, I am just venting.
All in all I feel more confident in the Sloan doc after talking with her. I did not like the manner in which she spoke to me, and before my mom was diagnosed I probably would have gotten really ticked off about it, but I need to conserve my energy for more important things right now.
So, I guess we are stuck with a pathology report that has no muscle specimen. Should I be concerned about this? I thought I had read that getting the muscle was important. The local uro suggested a re-TUR, but the Sloan uro said it was not necessary especially in light of the negative urine. Curious what you all think.