I agree that T1G3 is a serious problem and difficult to make decisions since some will respond to BCG and some will not. As someone else noted understaging can be a problem, probably more often related to the initial turbt not adequately sampling muscle wall tissue than an interpretive problem. 2nd pathology opinions can be obtained and some urologic pathologists to consider are Dr. Jonathan Epstein at Johns Hopkins, Dr. Peter Humphrey at Washington University in Saint Louis, and Dr. Grignon at Indiana University. USF is an NCI center. I believe that with bladder cancer one needs a urologic oncologist with extensive experience treating bladder cancer which may not be the case at all NCI centers. Another institution in the Southeastern US to consider is Vanderbilt in Nashville. They have several experienced urologic oncologists. As someone noted obtaining slides should just be a request of the pathology department where the original slides were made. Most will be happy to make recuts of all the material and send them to a pathologist of your choice. If you intend to self carry them or mail them yourself, be aware that it will probably take at least 1 working day to have the slides prepared for you. The path department can overnight them for you (I would specifically request expedited shipment) and if going for a 2nd urologic opinion they can be sent before your appointment to allow the chance that they will have been reviewed prior to your appointment. Most, if not all, urologists will have the pathology department where they practice review any relevant slides as part of their consultation. Best wishes,
I had my slides sent to John Hopkins, and it was my Uro that sent them. All I had to do was tell him I wanted them sent and his office took care of the mailing.
I had the results from JH within two weeks.
Don’t take any risks with the grade 3 stuff. Try to get the best of the best for treatment. MD Anderson was one of the places recommended for a second and they seemed like an appointment would be easy when I talked to them. The biggest obstacle I had with Anderson was insurance, mine wouldn’t cover anything out side of Colorado except an emergency, the plus side was I have family in the Houston area. There are some here that can tell you who’s good in your area and who to avoid. Cancer is cancer and you want the best. And as Pat said, under staging seems to be a problem.
Keep us updated and keep reading. And if you have any questions, be sure to ask.
5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...
7 years 10 months ago - 7 years 10 months ago#36490by Patricia
The time frame to get the second opinion is between the initial diagnosis and before the BCG treatments. Re-Turbs are recommended from 2 to 6 weeks after the first. Memorial Sloan has said that understaging happens approximately 70% of the time at their institution...and mind you these are people coming for their second opinions and Re-TURBS.
This is the Johns Hopkins site which is #1 in Urology..it will tell you how to send the slides for a second opinion.
You may call pathology at the hospital and request them and pick them up (they will package them) and you can send them or you can ask them to send. In my experience you will be much faster than the lab will..just make sure you get a receipt of who signed for them so you can track them.
Let us know where you are and we'll try to get you with a top uro/oncologist as close as possible.
Just saw you were in Florida.........Oh Lord...i hope your insurance will let you get out of there. Only one super doc at the U. of Miami Dr. Mark Soloway who specializes in bladder cancer
But i think he's getting bombarded with bladder cancer clusters from Florida.
I had no problem getting into Memorial Sloan which is tops in bladder cancer...i was in the following week after calling..but they have many top specialists. Mind you i traveled from Ohio to NYC....well worth my trip. Dr. Herr saved my life as i was most definately understaged and margins were left. He got them all. I'm still here 8 yrs later. All you can do is call and see how quickly they can get you in.
Thanks so much, Mike & Bill. Mike, the article you point to is one I've read (among many) and is now in a 3 ring binder with other articles. Our doc was very up front about the two sides to T1G3 and the immediate cystectomy opinion held by many docs.
Bill, he clearly said he had no qualms about our getting a second opinion. I've felt more and more confident of what he's telling us as I've waded through the medical lit. I'm lucky in that I was a medical librarian before I took my current position and have used my research training in my current librarian job, so my skills are no too rusty. Frankly, I was scared of what I'd read, but, as I said, I'm feeling more confident.
I will look into getting slides seen elsewhere and will start asking about the best we can get should my husband need the cystectomy.
We live in FL. We haven't checked our insurance to see what it'll do elsewhere. That's another step in our journey. This has been so fast we've yet to see a statement from the insurance.
If we have to go with cystectomy, any recommendations in FL? I see that the U of So. FL (or maybe Central, I wasn't paying close attention ) is a Cancer Center. So is Univ. of AL, B'ham. Those and anything in Atlanta would be closest to us, but we'll go where we need to go for the best. I do wonder how difficult it is to get a second opinion at places like MD Anderson or Johns Hopkins, especially if we're talking about dealing quickly with the G3.
Again, many thanks.