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How to go about getting an expert opinion?

11 years 11 months ago #6761 by Rosemary
PS....I hope that the Doctor was not the one who said that the Radical Cystectomy was 100% guaranteed. The odds are just not like that with a cancer diagnosis. At least not by what I have read on this board.

Anyway, I hope that someone who knows the numbers will enlighten us on this matter.

Your friend,
Rosemary

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

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11 years 11 months ago #6760 by Patricia
Renee....just wondering who your father is seeing...Dr. Perry, Dr. Dalton or Dr. Garnett? All 3 specialize in bladder cancer however you should request your slides from pathology and all your reports, CT scans from the first hospital where your father had his TURB and take them with you to the July 30th appointment. My guess is they will want to go in there to confirm diagnosis with a second TURB especially if the first surgeon did not get all of the tumor or the margins. You also want to make sure if your father insists on the cystectomy route that his surgeon does a LOT of these a year....and that he has choices on the type of bladder that will be reconstructed. Please keep us posted or if you have any other questions.......Pat

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11 years 11 months ago #6759 by Rosemary
Renee,

It will be interesting to hear about the July 30th consult and I hope you will keep us posted.

I just feel a little surprise that the Doctor is so amenable to performing a radical cystectomy with a T1 G3 Stage and Grade. (Unless we are missing an unknown factor such as CIS)...


Best regards,
Rosemary

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

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11 years 11 months ago #6758 by helpdad
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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11 years 11 months ago #6755 by Rosemary
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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11 years 11 months ago #6753 by helpdad
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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