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Seeking suggestions and more information

7 years 11 months ago #39636 by DianeN
Hi Pat,

We are located in Oak Lawn, the South Suburbs of Chicago. If you have any other recommendations please let me know as I fear that Dr. Steinberg may be hard to get in to see. His office was closed when we phoned last night, so we'll be calling first thing this morning to schedule an appt.

The University of Chicago is approximately a 30 minute drive plus traffic, so this facility is much closer for us.

My father is very scared to have a 4-6 surgery. His present dr. said it would take that long for bladder removal and an ileal with two sets of hands, himself & a general surgeon. Neobladder surgery was an option, but the doc didn't recommend it as he said it would be a longer surgery and he didn't feel it was in dad's best interest.

In reading your reply, I was elated to learn the surgery time difference between his present doc and a top notch surgeon and that you're almost at 9 years; congratulations :) That alone will make a tremendous difference in the decision making process!

We are going to see his doc tomorrow and I will be asking about his nodes and margins. If you think of any other questions I should ask, please let me know. I'm in the midst of writing up my list.

Thank you very much for your reply,
Diane

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7 years 11 months ago #39632 by Patricia
Diane,
Where is your father located? There are many top rated uro/surgeons...Steinberg at the U of Chicago is one...but also Indiana University's Simon Cancer Center has one of the best in Dr. Koch who has this surgery down to about 3 hrs for a neobladder. My guess is your father might not be a candidate for that and an ileal is probably a better fit for someone his age and that would be an even quicker surgery.
http://www.cancer.iu.edu/patients/find_doctor/physician_bio.php?id=3151
If no nodes are affected and clean margins and a Great Surgeon the 5 yr rate is probably higher than 75%. I'm at almost 9 yrs with Stage 2 and no nodes involved and i had a great uro/surgeon.
That is really the key to success.
Just let me know where you're located.
pat

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7 years 11 months ago #39631 by DianeN
Anita,

Thank you so much for your kind words. It really means a lot :)

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7 years 11 months ago #39630 by DougG
Diane,

You are getting him to one of the best with Dr. Steinberg, so you have certainly done your job doing research and acting as a 2nd set of ears. Way to go!!! Keep us posted.

Anita (Doug's wife)

Anita
Forum Moderator
Caregiver

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7 years 11 months ago #39629 by DianeN
Thank you Lynda! I've been charged with research and am also acting as a second set of ears at all dr. appts and I must say, it's been a tad bit overwhelming.

His present urology dr. works at a small facility so I'm not entirely sure of his expertise in this field but will ask how many surgeries he has performed at his appt. on Wed.

In reviewing some of the other posts it's my understanding that Dr. Steinberg at the University of Chicago is an expert in this field and comes highly recommended, so we are in the midst of scheduling an appt. with him for a 2nd opinion.

It just seems like there is so much to learn and being that he has an aggressive cancer type time is of the essence.

Thank you for the information, I will head over there.

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7 years 11 months ago #39628 by Lynda
Hi Diane - Sorry you had to find us but we're glad that you're asking questions. Look at the resource section of the website and you may find some of the answers you're looking for. The biggest source for info is your Dr. The question regarding "bladder infusion chemo" is one to ask of him. The type and stage of your dad's cancer may be a deciding factor in your drs. decision to offer surgery as the best approach. The drs. concern and decision to bring in another dr. for the surgery is a good sign (to me).

A second opinion is something you might want to consider, but remember, be agressive in your options and treatments and don't put it off any longer than necessary.

Good luck to your family and keep us posted.

Lynda

Lynda

3 years UTIs
Indiana Pouch - July 2010
Pulmonary Met. - May 2011
Chemo started June 2011

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