Hello I am new here...

Hi again,

 Hope everyone is doing well. The pain issue is finally getting under control. Only having to take peridium and hydocodone about once a day. Peeing still is unpleasant but I can do it.

 Had my pre operative tests today. They took blood, urine, met with anethesiology peoples, ekg, admissions ....everyone EXCEPT for the Dr. I left with more questions than when I got there. You folks have listened so patiently to the problems and distess I have already been though, helped me with some very tough times and issues. Feel like a foolish person...I trust my Dr...but his support staff are the most pathetic I have ever met...yet I am there.

 The physician assisstant who read me the speil like a disclaimer on a radio commercial, told me I had micropapillary TCC, grade 3 T2b.I said no - it had been downgraded to grade 3 with no micropapillary variant according to my Dr Gee. SHe continued to read the path from the other hospital. I asked where the 2nd reading report from the UW was. She was so arrogant and ignorant...She even gave me grief about filling out the forms from my employer....She said I should work until the 13th...my surgery is the 13th. I asked how I was to do the 6 liters of golitely and the antibiotics if I am AT work. The whitch was just smug that other people do it, blah,blah,blah. I was in tears, and on my way out I ordered copies of ALL my path reports to get to the bottom of this.

  So here I sit - freaked out AGAIN thanks to his support staff. Tomarrow I am calling the Dr and demanding he make time to see me face to face in the next 3 days to answer my questions AND fill out papers from my work so I don't lose my job and benefits.

 As you can see in previous posts...I have been thru 2 uro's and am now with urologist/oncologist. I almost died twice from hysterectomy - bleeding and celulitis. My cancer may or may not be micro papillary and I have had blood in urine since last October.

  What the hell am I supposed to do? If it is micro  - have I lost too much time to do anything but what is planned? I want to tell Dr that I have had enough of this crap especially the PA today who I never want to lay eyes on again. I am plenty afraid of the cancer but I am almost too afraid to be treated there with all the problems his support staff is CREATING for me. I am honestly getting depressed primarily because they aren't effectively doing their jobs. God help me, but I am thinking I should just forget about getting treated and at least be in peace for now.

  Where are answers and why is it like this? I feel like I have lost my mind.

Holly,
Sorry.....fingers were typing faster than my brain was thinking. I meant to say.....whatever you decide to do.
Jean

Holly,
My only concern after reading your posts is why are they doing another resection when they know you are going to have a cystectomy. My surgeon even explained to me that when he does a cystectomy he has a "special" way of removing the bladder to minimize any chance of anything from the bladder spilling into the abdominal cavity and disturbing the tumor as little as possible so why would they take a chance on disturbing the tumor more than necessary to get clean margins when they are going to remove the whole thing. It was three months from my TURB to my Cystectomy so if you haven't reached that time frame yet I would seek another opinion just to see if the TURB is necessary. I don't want to scare you or cause you any more worry than you already have because when you look back on this after all is said and done you will realize that the waiting was the hardest part. Claire told me that before my operation and she was so right and I know you want to get the show on the road, so to speak but I would be questioning this.
Whatever you decide to know know that I will be thinking of you and prarying to St. Peregrine for you.
Blessings.....Jean

Hi Holly
It sounds like youve been submitted to so much.
I am really pleased you have been reassured by your urologist and feel confident in him.I would still be questioning the need to remove the tumour before doing the cystectomy if you have his phone number and havent already asked why he is suggesting it I would ask the question.
In my experience which is only of my individual case my urologist was keen to disturb the tumour as little as possable due to its depth in the bladder wall and the risk of releasing cancer cells.His aim was to remove the bladder and surrounding tissue enblock to minmimise any chance of cancer cells being released into my abdominal cavity or blood stream which he did accomplish.He was completely correct as the tumour had microscopically invaded the fatty tissue around the bladder.There was obviously no way this showed on any CT scans and he couldnt have known before the pathological examination.Your guy might be totally correct and obviously not only is he the expert but he knows all the details of your individual case but I would want to know a damn good reason for submitting myself to further invasive procedures.
Please take care and make sure they have your best interests at heart .
Love Claire x

I had a urologist did 1st scope - saw nothing and went "hhhhmmmm"
2nd urologist did 2nd scope and 1st Tur - recommended bcg... for stage 2 grade 3...
got 2nd opinion from urologist/Oncologist....he did 2nd TUR and is doing the neobladder.

Good moves?

Holly...how many different surgeons have you had? I'm lost!!....Did they take any blood work to test for infection? You shouldn't be shaking in pain from peeing. Are you running any kind of a fever at all? You shouldn't have pain from a re-section. If you start shaking when you're not peeing please go to an emergency room........Pat