About Konety...he's a top uro/surgeon formerly of UCSF with training at top centers. He recently went to the U. of Minnesota as his wife is also a MD and was offered a position there..so UCSF's loss. Very bright man and personable.
Certainly worth talking to.
Just curious as to who you saw at Mayo. You can PM me that info
I sure wish I could talk to you about U of M, but my U of M is in Michigan not Minnesota - Jim(Humpy) too. It sounds like you're making all the right moves and I really can't add to much to what Mike has already said.
I was also T1G3, had 2 TURBTs to remove the tumor, restaged 6 weeks later right at U of Michigan before I was due to start BCG. Was full of cancer again and CIS also was present so due to aggressiveness of the cancer decided to have the RC with neo. Had surgery MArch 2 and am doing really good. Pretty much back to my previous activity level except for heavy lifting.
Good luck with your search - you'll find the right doc for the job!
Two members here (at least) have been treated at U of M. I sent a note to both Andy and Humpy (Jim) to ask them to let you know about their doctors there.
Pat can probably give you some info on Konety and also if there are other doctors at Mayo who have a better bedside manner.
Sometimes, the doctors who are exceptional at surgery or some other specialty kind of suck when it comes to patient discussions. I found a similar situation when I went to MD Anderson. I didn't like the doctor after having to wait for 6 hours (the lights were out in hallways and all other rooms by the time he saw me) and then his bantor just put me off. Turns out the things he said wound up all being correct, but I decided to go elsewhere because I just didn't like him. Not sure if my situation would have been any better or worse if I stayed with him or not.
With that said, there certainly seem to be quite a few doctors who specialize in bladder cancer and are great surgeons (if it comes to that for you) who also have an excellent bedside manner.
I can say one thing. It sounds like you are doing all the right things! You'd be surprised how many folks have to be pushed and prodded and cajoled into getting to a top bladder cancer center. You've already done it and have the absolute right attitude about treatment.
I'm sure others will up and online later today and will respond with some great advice on doctors.
It does sound like BCG is the way to go given your current status. Great to hear that you did get the reTURBT already and as you can tell from the result, it was a darn good thing you did. You don't want to miss CIS if it is present and at least now they know. CIS responds well to BCG. Here is link to Dr. Lamm's website. He's pretty much the top researcher in BCG. You can also ask him questions on email and he is quick to respond.
I'm a newly diagnosed 49YO guy - had a 1.5CM tumor G3T1 +CIS right next to the main tumor. I've had 2 TURBT's to remove/restage and BCG is recommended at this point.
I had a local Urologist in Minneapolis do the initial diagnosis and first TURBT - very nice guy but I think I want the best - like everyone else, right?
I went to the Mayo Clinic in Rochester, had my second TURBT there (4.5 weeks after my first TURBT)- thats when they found the CIS next to the original tumor site. The Mayo Clinic seems very organized, and most everyone is very professional and respectful except the doctor I was matched up with.
I mainly worked with my Doctors assistant (a resident) and very little with the Dr himself. I won't get into great detail, but this Mayo Clinic Doctor has a terrible bedside manner, very rushed - when he is giving info he talks very fast and gets irritated when asked for any clarification at all. Does not like more than 2 or 3 questions and he again shows irritation. It gets to the point where you don't want to ask him anything at all - it gets too frustrating. I'm really shocked by how he dealt with a me, a Cancer Patient? - it's just amazing. Bottom line, it's not a good match and I need to move on to another doctor.
He recommended starting BCG within 2-3 weeks, but I don't feel we ever had any real discussion about it and he doesn't seem to want to. Lack of info could be very dangerous to my outcome - ya think! I MUST have a doctor I can communicate with on this! I need to be completely informed to make the right decision. I need to trust my doctor.
Does anyone know of a good doctor in Minneapolis who has had a lot of experience and success with BCG treatments? (Although I might go with my original Mpls urologist for BCG - still deciding). I figure I can start my BCG treatments with a local doctor/urologist, then find a main doctor at a major cancer center to oversee my treatments, checkups, and progress.
I want to give the Mayo Clinic another chance because I want a major Cancer Center to oversee my treatments and progress. Does anyone know of a good doctor at the Mayo Clinic who specializes in Bladder Cancer and possibly experienced with neobladders. It doesn't need to be the Mayo, example: I've heard good things about a Dr Konety at the U of M, but don't know too much about him.
Recommendations and advice on this would be great. I need to talk to someone in detail about my options and make sure I make the right decision!