Always feel free to speak your mind here. That's why we exist.
I sometimes come on pretty strong but that's because I've seen what happens with a number of folks who have come to the forum over the years. My first diagnosis was in 2006 so I have spent a lot of time learning all I can. Compared to some, I'm still a newbie.
We push hard on getting to the top doctors because we've seen folks who don't die needlessly. Getting the best doctor you can means better outcomes. Since you already set up for MD Anderson, you are doing the right thing. The surgeons there are going to be significantly more experienced than your urologist (no matter what his receptionist says). The pathologists at MD Anderson also specialize in bladder cancer and are better at determining if there were complete margins.
Right now, for you, it is about you. Later, hopefully, you will be coming back here to help others who find themselves in the situation you are in now.
I wish you the absolute best outcome and I do know that the highest statistical probability of that happening is at MD Anderson.
First, I'd like say that I am thankful for this forum, it has helped me start to get my head around this.(And helped deflect some of the stress from my wife) I appreciate all you BLC Vets having the paticence with me as I try to deal with this. I don't hold much back in life and I will probaly say too much here also but that's how it is. To be honest with you this is where I am able to speak out about my situation without feeling like I'm burdening those I'm speaking to, at least ya'll can ignore me if you want to-- Ha. Now back to me(See thats what I'm talking about!) I just came off of 2 rounds of anti-biotics(1 from my GP and 1 from my URO- did not affect my situation at all. I have had problems for a long time and I always thought that it was kidney stones causing them because I would seem to pass a small stone and it would improve slightly but then the problems would return shortly. Occasionally I would have a stone that I had trouble passing. I should have gone to the doctor a long time ago and followed up when I was susposed to but thats "water under the bridge" now. Later Ken
Well Kenneth..it looks like he has you in a strangle hold. Sounds like an infection to me which, of course, can be treated with an antibiotic and something to deter the pain. Instead he wants to go in there with a probable infection and remove the tumor and do the biopsy and throw in a dose of mytomycin....watch where the pain and urgency goes after that!!
You've got one of the best with Kamat...call his nurse..tell her whats going on and recommendations before June 15th appt.
Ask your own uro why he won't treat you and test you for infection and why he would even consider a biopsy if you have an infection?
I'm may be way off but these seem like good questions????
Update on my situation: I have a confimed appt. with Dr.Kamat at MD Anderson on 6/15. BUT!!! I am having issues with pain, incontince,and burning urination. My URO is telling me that I need the biopsys and TURBT done Friday as scheduled to remove what he can and treat with Mitomycin. He says then we can stage the cancer and decide what to do then. When I got my records to send to Anderson I checked the pathology report from the bladder wash and the diagnosis was: High grade urothelial carcinoma,many malignant urothelial cells, some with degeneration. The tumor(s) is not visible on the latest CT. I am all set up at the Surgery center for tomorrow so wish me luck!(I still have 24 hrs to back out) Later,Ken