Bummer...

Gracie,

It was so great to talk with you today; you are a smart woman and resiliant and will do just fine. We are all here to help you get through this very difficult time. I am very excited; called my friend in CA and talked to her; she lives in SF and so I just know you will want to call and talk with her, she gave me the OK to share with you her phone number....so please check your PM, where I will list it.
Take care and know you can always call me again...I will also give you my email address in that same PM. Going now to PM you so you have chance to call her later today if you so desire. Hugs, Melodie

Gracie,

Glad you enjoyed hearing from me; that is what I like to do, write so that someone feels as if they have been given some needed information and feels "hugged"....I have gotten that feeling many times from others on this forum.

And you are right about Pat...she does have a wealth of information and she is going to know who the best doctors are. I believe you are headed in the right direction. As for radiation, I agree with Pat and would refrain from doing any of that since it injures the intestines to some degree and you want them to be in the best shape possible for making the new bladder. My phone line is busy when I am on the web but hopefully you can get in touch with me this weekend...if not, then you can give me your number and I can call you.

Only other advice for right now that I have is to find a good doctor that can begin treatment without too much delay. Take care & hugs sent your way. Melodie

Gracie since you had a blockage in the one ureter may have something to do with the increased rate of creatinine...normal in a female is 0.5 to 1.1 but they should also do a calculated glomerular filtration rate along with a serum creatinine level to evaluate kidney function. They're probably not worried as i suspect now that you have the stent things should improve.......thats my guess.
There's a bunch of stuff going on out there that i find that is new...its hard to keep up....lots of it in trial stages but i try to keep on top of it...not easy.
pat

Hi Pat!

Yesterday we took a small recorder with us. Besides having 'senior moments' - its just so much information to absorb. : I know there was some logic behind the radiation but I think I sort of mentally dismissed it and wanted to move on. Haven't had a chance yet to listen to tape but will let you know.

As I mentioned - the previous lesion (before TURBT)was partially blocking the ureter and they have put in a temporary stent that opened things up a bit. Just a little troubled that my creatinine is still a bit high (its. like 1.26 where I usually have .9 or 1.0). Will have to keep an eye on that too - it may take a while after clearing the pathway from the kidney for everythig to get back to normal.

I can't imagine that there is a protocol out there that you haven't heard about, Pat! You are truly amazing.

Best,
Gracie

Gracie...i was T2 Grade 2.....no radiation..no need to compromise surrounding bowel especially if its going to be made into a pouch. If Ct scans are clean, bone scans clean, blood work good...I wouldn't do it. Wonder what his theory is on this? Maybe there's a new protocol out there i don't know about???
Pat

Melody,

After time i read a new post I feel as if I've been hugged. I certainly feel that as well as such encouragement after reading yours.

I am just about 100% sure about which way I want to go. I can see the neo working for men but one size does not always fit all. It just doesn't seem to fit for many women. I'm glad it works for some but I don't want that kind of gamble. So I can see my mind being set on the pouch.

I did see my doctor yesterday. As expected, he preferred the neo. However, he said the choice is ultimately mine. He said he wanted to consult with another of his staff to see if I am a good candidate for laproscopic surgery (with the pouch). (I didn't even know they did this at this med center!) I expect to have a follow up with him next week.

He mentioned that I could opt for radiation before but that is an option. My first instinct is that if I don't need it - I don't want it. The tumor he just took out was T2 Grade 2/3.

Melodie, I did get your email. Thank you for being so generous as to offer to speak to me on the phonee. I will try to call you this weekend! Thanks so much.

Best,
Gracie