Appointment ……..disappointment!

Maria,

You have your head on straight, and are moving forward, good for you, many would have been tramatized by the experience. Merry Christmas to you and your husband, Ginger Beane

Oh My God...an educated patient!!....and she's got an English accent.....Maria you scared the hell out of him...can i say that?
I only had one encounter like that when i went for my second opinion but he also wanted to do his own TURB and then he said he'd answer questions. OK with me since he was undeniably one of the best surgeons doing this...i took that gamble mostly because i had done the research and knew most of the answers anyway..i just wanted confirmation. But we did part ways when he only wanted to do a neobladder on me. He couldn't give me one woman..not one..that was a success. Its not that he's a bad surgeon....its just doesn't work that well with women because of our anatomy. I wanted to be in that 33% where it works but there was no guarantee...i wanted a guarantee with my parts. So i was off and running for the best Indiana Pouch surgeon and i found 4 of them and they all agreed with me and so far i've gotten 5 yrs and 50,000 miles out of my pouch and going strong.
You've got some limited resources with your insurance and living in the state of Florida but there are some good ones there and i think we've got a good lead on one right now....Don't scare him ;D Pat

Hello again and thank you for your support and views of my experience:

wsilberstein
I could write a letter of complaint and have decided against this as I really need to focus and find another surgeon. I will keep my notes and perhaps do this later on.

Mikeg
I live in Florida. I just could not see that doctor again. If this was his attitude while you are awake and in control, I could not even think what he would be like say if I was in OR.
It’s the way he said you “will have to self cath” in the context of ‘the future’ and long term which was indicative of his track record of neo bladder with ‘failure rate’ with women. Seems all his female patients must have to do that long term which further indicates poor quality!
Thanks for the explanation of the drugs, he got me on that one! As he just could not manage to explain answers to my questions and when I asked about survival rates he just shook his head and said ‘you don’t what to know about that’ but I did want to know!!

Ian
2 weeks ago I was introduced to a Nurse Oncology coordinator, I felt like I had struck gold when I first spoke with this nurse. She could not believe my experience and assisted with my first Oncologist appointment due mid January. She is also trying to help me find another surgeon.
I was referred to this hospital by my urologist. When I asked him to help me find another surgeon he did not reply to me. I am from the UK and it appears when in Florida you have to find your own doctors. This guy who suggested chemo did not inform me where and how I could do this, but I wasn’t worried as I had a contact.

Rosemary
I have called him worse!

Leigh
You are right to say follow your instinct, my gut feeling should have told me not to go anywhere near this hospital. They refused to offer me an appointment unless I paid a $5,000 retainer as they could not be bothered to validate my insurance. After 4 weeks of daily phone calls from them regarding insurance issues they finally offered me an appointment for end January. I had to write to the CEO to get an earlier appointment.
I am just angry that I put all my efforts and energy into this which has proved a total waste of my time. I was ready to give up but my husband was not going to allow that to happen. He has been my rock!

Melodie
No way will I put myself through 25-35 radiation treatments as he suggested and with no guarantee at the end of it! It will finish me off and I never even thought about the damage it could cause. He must have been thinking of bladder sparing but did not verbally communicate that to me!
I phoned my insurance company and told them to pro rata the visit down to 22 minutes. They have agreed to pay for a second opinion.
I may not have a medical degree but I do have a masters degree and post grad law degree with honors. The NCI advise to educate yourself for best treatments available and that is exactly what I have been doing. I was not even given the chance to discuss these facts.

I am opting for the chemo /surgery of if I can just get the surgery and no chemo or whatever it takes to get this cancer out of me! I can’t even decide which type of bladder replacement as I have many unanswered questions.

Ginger
Thank you, I am not discouraged, I am strong!

Pat
Got your Pm ………… what would I do with out you, thank you so much.

Hope all this is making sense. Would anybody know why he had to do an internal? It was painful and I have been in pain since and am taking strong painkillers.

I am a very tolerant and understanding person. I have a non judgmental approach to circumstances and people I encounter day to day. I do not want sympathy for my diagnosis. I do however expect a degree of reciprocal respect and equal power balance between doctor/ patient relations.
I do not expect a doctor to disempower any patient when they are imparting knowledge and seeking an understanding of their condition. All I wanted was staging and dx confirmation, empathy, understanding and most important of all reassurance about best treatment options. My experience was degrading and humiliating.

I am not going to be preoccupied about this, I have moved on.

Everything is on hold until January, I will not let this cancer spoil my Christmas with my family and friends.

Thank you for letting me vent …..boy did I need to do that.

Merry Christmas to everyone xxxx

Maria,

Man what a mess, and you had such hopes for this appointment. I am sure Pat has something to say to you. Take her advice and follow thru. There has to be someone down there interested in helping you. Easy for me to say but write him off and go on. Don't be discouraged, the fact its the holidays is probably not helping but you need to move on and get yourself another specialist who cares.. Maria, we are all here to help!!!! Ginger Beane

Dear Maria,

Wow! I recognize how busy some of these doctors must be but there really is no excuse for treating a cancer patient with such disregard. I would write a letter to their "Patient Relations" director and describe your visit just as you have with us...their response may not make you feel any better but at least a complaint will be registered. And given that kind of treatment, your visit should be a "no charge" and why should anyone have to pay for such unkindness but of course they will charge you. And I would NOT allow that guy to touch me either! Somehow, someway, you need to find someone who is better than this guy. >

Also, as I understand it, if you get radiation, there is the possibility of damage to the intestines and then the doctors may not be able to use them for a neobladder or a Indian Pouch. So I would be cautious in regard to accepting that idea. Remember, you are in charge; you are the customer; you get to call the shots and don't let any of these doctors intimidate you. They may have a medical degree but most are lacking in a real sense of compassion & understanding.
Keep us informed....stay in touch...do try to have a happy Christmas in spite of the medical profession. Don't let the bastards wear you down! Melodie

Dear Maria,

Sorry to hear about your experience with that awful specialist.

Your friends here at blc forum do give a dam!!

Follow your instinct regarding finding yourself a good specialist, I appreciated your support and help with my second opinion.

I wish you all the very best in finding the best treatment for you!!

Take care of yourself and remember we all have to eat, drink and be merry this Christmas!!

Leigh