How to go about getting an expert opinion?

13 years 11 months ago #6662 by helpdad
Hi, my 67 year old father was just diagnosed Friday with Stage 3 bladder cancer. Well, actually, my mother said it was Stage 3, but then said it hadn't invaded the muscle yet which, from what I'm reading, can't be right. So I have to ask her more questions and find out if they got a copy of the pathology report or not. The urologist, a Dr. Hassan Alsheik, who did the tumor removal procedure recommended removing the bladder but also said there was a non-surgical option that has shown a 70% success rate (my mother didn't know the specifics). My father has not met with an oncologist yet. My father is still trying to decide what he wants to do, but I would very much like him to get a second opinion. We are in the Chicago area, but the hospital he's been going to is actually in Northwest Indiana. I'm wondering how we go about finding an expert opinion? With all the great hospitals in Chicago I'm sure there is probably a ton of doctors that specialize in bladder cancer and I just don't know where to begin. If anyone can point me in the right direction or offer some names of doctors he could speak to I would really appreciate it!

Renee

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13 years 11 months ago #6663 by wendy
Replied by wendy on topic How to go about getting an expert opinion?
Hi Renee,

You are doing a good thing by asking for names of good doctors in your area. I'm sure you'll get some replies. U of Mich has great uro-oncology dept, Chicago University too. The Cleveland Clinic is not far away either.

If I were you I'd try to get in with whoever is the head of the dept of uro-oncology at the place you end up at.

You could ask the present doctor for his opinion of the best place for a second opinion.

I have a feeling he was discussing the 'combined modalities' approach of chemo and radiation instead of bladder removal. We have info on the main site on this option under 'treatment options'. A person would need to fit very strict criteria to qualify for this protocol, such as one single tumor in the right place of the bladder, no ureter obstructions and other things. I take it your father is in pretty good shape or the doctor wouldn't consider bringing this up. But...he may be in the middle of a trial himself and looking for candidates? I wonder.

It's a valid option but the response/cure rates are not higher than cystectomy. I know of a couple of people who have taken this path, it's not easy but it spares the bladder and sexual function and is very appealing to younger men.

At the bottom of this page is a link to a place where you can search out the best hospitals and doctors in your area:
blcwebcafe.org/newlydiagnosed.asp

All the best to you and your father.
Wendy

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13 years 11 months ago #6669 by Patricia
Replied by Patricia on topic How to go about getting an expert opinion?
Hi Renee...a couple of suggestions for you....Bladder cancer is such a specific category and not all hospitals make the various lists of Best Hospitals as thats one small consideration in the overall ratings....Some of the best are listed but others aren't.
In Chicago...at the University of Chicago Hospitals there is Dr. Gary D. Steinberg who is director of Urologic Oncology there. He has done many new renovations in bladder sparing and surgery including non-invasive surgery for bladder reconstruction. You might want to go to their web site and look up his credentials or you can call 1-888-UCH-0200 for an appointment.
Indiana University Hospital in Indpls also does great work with bladder reconstruction...Dr. Michael Koch or Dr. Richard Bihrle.
Just a start for you.....Pat

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13 years 10 months ago #6753 by helpdad
Replied by helpdad on topic How to go about getting an expert opinion?
Just wanted to thank you all for the advice. It turns out his cancer is Stage 1, Grade 3...not stage 3 as my Mom had originally told me. It appears to be pretty aggressive, but hasn't yet invaded the muscle. We have convinced my Dad to seek a second opinion and he has an appt with a doctor at Northwestern Memorial in Chicago on July 30th. Turns out a friend of my sister's just had her bladder removed last year and this is the doctor she went to. I think my Dad has decided to forgo the treatment option and have the bladder removed, now the question is reconstruction or not. Hopefully the second opinion will help with that (the first doctor does not do bladder reconstructions). Anyway, thanks again for the help! I will post again when I have some more news.

Renee

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13 years 10 months ago #6755 by Rosemary
Replied by Rosemary on topic How to go about getting an expert opinion?
Renee,

This is a little confusing to me. Have the doctors recommended bladder removal?
Stage 1 Grade 3 is generally high risk, but treatable, as lots of us here will testify. My understanding is that cystectomy is not generally recommended unless there is muscle invasion. I am diagnosed T1 G3 and this is what my reputable doctors have explained to me.

Best regards,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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13 years 10 months ago #6758 by helpdad
Replied by helpdad on topic How to go about getting an expert opinion?
Rosemary,

His first doctor gave him the option of either treatment or bladder removal. Said the treatment has about a 70% success rate, whereas removing the bladder would "get it all". To my conservative parents it's a numbers game. 100% is better than 70%. (Although we all know with cancer there really is no 100%) I'm still not sure exactly what the "treatment" is...I wasn't with them at the appt and my parents aren't the best at relaying information. Possibly BCG which I've been reading so much about? My parents did say it would involve injecting something into the bladder over a period of weeks.

This is the biggest reason I pushed my Dad to get a second opinion, which he finally agreed to. I want another doctor to look over the pathology and give his opinion and run tests of his own. Perhaps it's not as dire a picture as the first doctor has painted. The 1st doctor did mention that it wasn't a clearly defined tumor. Rather than being a compact mass he could easily remove it was more like a large area of jelly?? I don't think he's confident that he got it all the first time.

I will hopefully know more after his appt at Northwestern on July 30th. My sister is going with them and I'm more confident in her understanding and relaying information than my parents.

Renee

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