You need a new urologist and you are doing exactly the right thing in taking her to a top-rated center. The new urologist will have the records from the current urologist ( be sure you request that they be sent as soon as her appointment is confirmed) and can go from there.
Some doctors are leery in dealing with the elderly and think that they shouldn’t recommend drastic treatment at that stage in life. I feel that the options should be presented and the patient and her family can make whatever decisions need to be made. If you haven’t read it, I highly recommend a recent book, “Elderhood” by Louise Aronson.. it discusses the issues facing treatment for the elderly in the US.
Please let us know how this goes.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
1 month 1 day ago - 1 month 1 day ago#58507by Alan
I am sorry for your difficulties. Besides papillary (mushroom like) there is what is called CIS. This presents itself as almost rash like and is always high grade which also may be what he was referring to. I do question why he did not biopsy it but, not being there I don't know what he was looking at (and wouldn't know what to do anyway). I would do what you are already doing. Go to Fox Chase and bring your Mom's records, they are yours. It is very likely a second TURB would be done anyway even though it sounds like your URO didn't go deep enough....which is common do to the sensitivity of the procedure, it even happened on mine.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
I need to vent, so I hope it's okay. Today we met with the urologist for the post-op and to have him share the pathology report from my 94 year old Mom's "TURBT." I put that in quotes, because what we thought was a TURBT turned out to be a lesser version, and now we are still uncertain of the stage of bladder cancer. I'll try to be brief and hope you can give me some of your thoughts! The pathology report showed infiltrating eurothelial carcinoma, invading the lamina propria , but not enough muscle adequacy to report on that. Residual lining (epithelium (?) was unremarkable. Grade was called "Intermediate". No lymph node invasion.
I'd actually accessed the report in the hospital portal days ago, but didn't tell my Mother, wanting the doctor to interpret it (and I went crazy googling everything to get a read on it!). I knew enough to ask about the muscle involvement that was missing, and learned that he'd not gone deeper into the muscle to biopsy it because he didn't think he was dealing with a cancerous tumor because it was just a very red, inflamed spot/area that didn't resemble a tumor/polyp, so he didn't go much past the lining/lumina propria. He said this was a Stage 1 cancer (T1).
I told him we were leaving on Saturday for Philadelphia and I was going to take my Mom to Fox Chase Cancer Center, which has a great reputation. He then said, "because of her age, you could just wait 3-4 months and see if it returns." I was stunned! I said it sounds like she needs a 2nd TURBT because you didn't dig far enough into the muscle, so we really don't know if it's more than Stage 1. He said, "Well, I really didn't do an actual TURBT because there wasn't any tumor to cut into." I asked him what he called what he did, and he said he scraped and cleaned put the area, biopsied what was around it, and fulgrated (?) the area--sorry can't remember the term.
He again referred to my Mom's age and said you don't want to do anything really aggressive even it if is Stage 2. He said, you don't want to remove your bladder and carry around a "bag." She actually said later she agreed that she didn't want to do that. I was not pleased with his attitude and question his decision not to go into the muscle, but what do I know?
I'm waiting for a call back from Fox Chase to schedule an appointment, but are we really bad to square 1? I will know soon if what he did was correct once I get a second option. Any thoughts?