Hello I am new here...

Thank goodness I have been so worried but no wanting to put things too bluntly.The doctor employs and runs his team and it is difficult to have confidence in one whose team is so badly managed.
Good luck on Friday
Love Claire x

ok...I called the direct line to the DR....got a lady who continued the run around about protocol...I have had enough to say the least.
On Friday morning I will be seen in Mayo Rochester By Dr Blute. Is getting treated like this the same everywhere? How can one sort thru all the medical, emotional and physical effects of cancer when it is all so screwed up? I am still so freaked out...not even sure of the dx since yesterday. If I were a nurse or physician assisstant, I could not live with myself treating folks like that. Good thing I am not - I faint at the sight of blood.

My Momis going with me, lol hubby doesn't even know I am going yet. But everything inside tells me this is a pivotal moment...what happens next is too important to chance like that. Thank you for helping me find the courage to get moving. Really, you have helped me get thru a really dark time here.

That nurse should definitely get a different job but before she does she should take the Go Litely and try and stay at work. I she nuts???? You cannot take the Go Litely and go anywhere except a few feet from your bathroom door.
I just feel so terrible that you have such an unsupportive team. My sweet Dr. Laudone has had his main nurse for 14 years and I don't think there is anything that wonderful woman doesn't know and she has the patience of a saint. That is how everyone in a Dr's office should be.
I hope you get ahold of your Dr. and tell him what happened. Does he know his patients are being treated like this??? If he does and doesn't do anything about it I don't know as I would have much faith in him either. I also would definitely like to know why he wants another TUR when you are going to have a cystectomy. If it were me I would want to be given a very good reason for that.
I sure hope you get this sorted out.
Blessings....Jean

That nurse is insane, of course a person can't work and take Golitely...I'd love to see her try it.

If it is micropapillary the experts on this would say you need chemo first. MDAnderson has been studying this very rare variant. Maybe you could send your path reports to them for a second opinion as this is very serious.

Also, many experts would recommend chemo anyway for someone with your history.

I agree that another TUR seems weird. Is this a good doctor, are you sure?

If you could send me a copy of your path reports till now, I could try to get some advice from my friend at MDAnderson, Dr. Kamat, who advises this site.

So sorry to hear about your difficulties.
Wendy

Holly
Without frightening you more than you are already spooked I really think you know what you have to do.
Your doctor may do the surgery and hopefully makes the decisions but his support team are responsible for most of your care. Do you have any confidence in them from what you are saying I wouldnt have.
You have his phone number why didnt you phone during yesterday and ask him to come and clear things up.Please get this sorted one way or another before your surgery is due why did you choose this man to treat you it seems as if you have never been happy with him ?
Take ownership of your health back from this team you are the best person to care for you.What does your husband think I know mine would be going mad and marching me out of that hospital quicker than you can say Jack Robinson.
You only get one shot at this make sure you get it right.Take care
Claire

Holly...you definately need to be treated. I'm pretty aghast at whats happening with his staff. I thought you had made it pretty clear to him that you need communication and that he gave you his number. I would call him and relay what happened today and if you need to pin your path report to your OR gown do it. And trust me nobody can be at work and drink the golightly...which they should rename...Goahellofalot.........I can't speak for anyone else but i was living in the bathroom all night and i still wasn't running entirely clear before surgery...i'd almost forgotten how much fun that was!
Call the doctor.
You need the surgery to survive
If you're not confident in this surgeon and his team....get on the phone to a major cancer center. They will be expedient in getting you in.
Pat