Checking In

here is a listing of UCLA uro's
urology.ucla.edu/body.cfm?id=19
two are listed in Castle Connelly's best docs.....DeKernion, and Belldegrun
look over their bio's
Chin is a younger surgeon and may be excellent just doesn't have the years on him yet. Just ask how many diversions he does in a year.....if less than 50???? but he may be an up and comer ??
pat

Hehehe . . . you have a very down to earth way of dealing with things. You shoot from the hip and so do I. . . and sometimes I need to unbuckle the holster and calm down.

We're dealing with an aggressive cancer, so my feeling is to deal with it just as aggressively.

When Aronson told us at the last appointment that people who have tumors removed and think they're clear of the in situ, decide to just let it go, come back as early as month and the in situ has spread clear through the ureters and into the blood stream . . . that's how fast it can work.

Yes, my husband has been able to keep this under control for 11 years and that's amazing in itself, but never, ever before has he had such a bad reaction to a surgery as this last one . . and it wasn't even necessary . . . Aronson said he should have gone right into a Cystectomy, as he had always advised him, but my husband opted for the surgery rather then the Cystectomy.

Aronson said the in situ was just on the edge of going into the urethra this last time. Who knows where it could land the next time it comes back and I said that is my greatest concern.

So yeah, I am approaching this aggressively because my husband's life depends on how soon we can get him in for the Cystectomy. As it is, he's still trying to recover from this last surgery debaucle.

Now I realize that I have to keep an eye and ear on whatever these doctors say and do; that they aren't Gods and they clearly have no clue on communication and chain of command.

I'm angry, scared, confused and ready to fight anyone who tries to mess with my husband or me, but I realize I need more education, more information to bring to the table, so these doctors know we've done our homework even if they haven't.

Rayn

Jimswife,

Oops. I didn't recall that Jim had da Vinci surgery. I know about those ports (although I had open surgery).

Yes Rayn, Jimswife was VERY upset initially. She got over that rather quickly (as you have) and got down to the business of trying to figure all of this out.

Usually, it is someone coming here upset, angry, confused, shocked, dismayed, lost, afraid, depressed, etc. Either the the folks who think they may have bladder cancer, those who just found out they did, or loved ones of others in that situation--nobody comes here (in the beginning at least) just for fun.

Most, if not all of us who come here now, came here before with similar feelings. Sometimes, I forget that and start pouncing on people right away while they are still in the head-spinning mode. I forget that people are just pouring out all kinds of emotions at the same time as questions and respond to what they write and not what they feel.

It takes great people, Jimswife (just one example) to remind me sometimes about that emotion. Then I can take a few steps back, listen with my heart instead of just reading with my eyes, and respond in a way that works. Then again, sometimes I'm just an idiot so never feel shy about giving me a "talking to" when I need it.

Mike

Nope, Mike, the DAvinci Robotic equiptment that the surgeon used for Jim's RC is what I was referring to with Jim's ports. Sorry that is confusing. BTW, in all the 6 months Jim has been having chemo NO PORT vascular type has been put in him. Thankfully he does have decent veins. He was scheduled for port to be put in back in Sept. 2010 but he had a massive infection so that didn't happen then and just didn't. We were so eager to get chemo started that port being put in w/have delayed that so Jim just said, "let's do it" and they did. Started chemo. Anyway, the ports with the DaVinci are put into the patient at various points on the abdomen see this link: www.davincisurgery.com it is helpful to understand how this works.

Rayn, know that my prayers are continuing for you to have the peace you both seek. It is very difficult once you get your first diagnosis...I went into a fugue state myself and couldn't believe this happened. No symptoms, nothing and what? BC??? How can that be? It is also a lot for Tom to wrap his mind around. It sounds as if he has started to absorb how serious this is and is coming around. I came to forums like this for support and information and did a whole lot of research on my own. It is helpful to be informed going into this. The folks on this site are so very helpful, Keep coming back often, it helps. Ask Mike...he knows how upset I was initially. But, with knowledge I've simmered down a lot. Take care and know you have lots of cyber friends. BTW, Mike's awesome and warped humor has helped me often!

You don't have to apologize for your sense of humor Mike. I think we all really do understand it, so no offense taken at all.

This whole experience to date has been so very confusing. If it wasn't for being here, I wouldn't have known how truly dangerous and insidious this cancer is. My husband would probably have just blown off the surgery and trusted Dr. Bergman. Geez, I'm glad I'm here.

Rayn