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Second Opinion?

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compiler
Veteran Member
Joined : Nov 2009
Posts : 7698
Posted 2/21/2010 8:31 AM (GMT -8)
I'm wondering if many of you have chosen to get a second opinion on your pathology slides and if so was it much different.

I have decided to get a second opinion. I'll be faxing the paperwork to send the stuff to Jon Epstein at Hopkins.

Mel

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Cajun Jeff
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Joined : Mar 2009
Posts : 4175
Posted 2/21/2010 8:35 AM (GMT -8)
I guess there is no harm. With a questionable report might not be a bad idea. You PSA will let you know what is really gong on in the future.

Jeff T
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 2/21/2010 9:02 AM (GMT -8)
mel, what are you hoping it will show? if it is the same, then it wasn't needed. if its better, you can't undo what you have done. if its worse, which one do you believe, the better one or the worse one, or do you then get a third opinion and go for best out of three?

not being a wise guy, just trying to understand your thought process here. the bottom line is, your prostate is gone forever, along with the bulk of your cancer. what may or may not happen next, who can say? the jury is out. you still haven't had your first post surgery psa test yet, that will be your new base line, will make all your previous psa tests meaningless in a sense of the word.

i had thought about having mine read elsewhere, because i am suspicious that because of my positive margin, my quick recurrance, and my psa velocity both pre and post surgery, that i am really a stage 3, not a stage 2. but when i think through the process, i come back to the same choices i mentioned above to you.

you can't unscramble eggs as the country folk like to say. so for me, it is what it is, and i deal with one episode at the time.

you need to reach some point, perhaps not now, when you are not so consumed with all the "what ifs" in your case and in PC in general. I know its hard to do, but you can drive yourself crazy.

david in sc
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Worried Guy
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Posts : 3790
Posted 2/21/2010 9:48 AM (GMT -8)
Mel,
I'm with David on this one. What do you hope to gain? No matter what the results show, you cannot change what you did. Will you be second guessing your PSA tests too?
If you were paying for the reevaluation as a full out-of-pocket expense, would you do it?
Jeff
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John T
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Posts : 4315
Posted 2/21/2010 9:53 AM (GMT -8)
I'm with the advice the guys are giving you. Information is either useful or not useful. If you can't do anything with the added information is is not useful. PSA and not the pathology will dictate your next steps.
JT
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Tony Crispino
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Joined : Dec 2006
Posts : 8160
Posted 2/21/2010 12:10 PM (GMT -8)
After my surgery my pathology of the prostate was reviewed by Epstein. It was merely confirmed. Would I do it that way again. Absolutely. We are not talking about a huge expense here. I wanted confirmation before taking on adjuvant therapies, and that makes sense to me. If you are considering additional treatment options before a rise in PSA, then why not have a review of the pathology? If it is perhaps reduced in aggressiveness, then you might think twice about proceeding. If it is confirmed than, you have that much more confidence moving forward with an aggressive plan. Will it change, not likely. But each step from here should be calculated and measured against the potential side effects.

Tony
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Herophilus
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Joined : Sep 2009
Posts : 742
Posted 2/21/2010 12:46 PM (GMT -8)
Yes x 3 Pre Operative Yes x2 Post Operative Learn anything …NO Do it again…Yes Hero
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BillyMac
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Posts : 1858
Posted 2/21/2010 12:57 PM (GMT -8)
I tend to agree with Tony on this one. While looking at adjuvent treatment ( it was far past the time to be described as adjuvent though) the radiologist sent my post surgery slides to be checked by a different pathology lab. Initial biopsy said 4+3, post surgery said 4+4 and the recheck said 4+3 but this time specified the grade of cells at a focal EPE (grade 3). For some, had this EPE been the more aggressive grade 4 cells, that may have tipped the decision to have adjuvent radiation in attempt to knock them out.
Bill
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compiler
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Posted 2/21/2010 1:38 PM (GMT -8)

You all raised good points, mirroring my thinking. I was not going to get a second opinion, figuring that it will not impact any subsequent treatments. In fact, the only reason my biopsy got reviewed was because I had the biopsy done in one place (u. of Mich) and decided to have the surgery done in another place (Dr. Menon at Ford Hospital). They required a second reading.

However, Dr. Strum does urge very strongly that a second opinion be obtained. In my case, it is conceivable that a second opinion might result in a decision to do adjuvent radiation. It probably will not, but it might.

REGARDING cost, that is not an issue for me. I have good insurance that I THINK covers it (I have an inquiry in to them). If I read Dr. Epstein's site correctly, it is $200, but it might be more (one part was unclear). Regardless, Jeff, if I decide to do this and I have to pay the full cost, I would. But that is also a question related to personal finances, too.

David -- you said, "reach some point, perhaps not now, when you are not so consumed with all the "what ifs" in your case and in PC in general. I know its hard to do, but you can drive yourself crazy."

In a sense, you are correct. However, I would hope that every time I post a question, YOU do not conclude that I am obsessing about PC. I think I asked a very legitimate question and I got some interesting replies. 

Mek


 

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Worried Guy
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Posts : 3790
Posted 2/21/2010 2:31 PM (GMT -8)
Hi Mel,

I try to think of optional testing by framing a question to myself "Would I pay for it?" For example, you know me, I would love to know my PSA every month. But if I had to pay for the test out of my own money, $100, I would not do it. Instead I wait 3 months and have insurance pay. In a way that keeps the nation's health care costs down. I saved everyone on this site a billionth of a cent. (You're welcome!)
If you honestly think the results would influence your decision then you are justified. But if you are already leaning to not doing adjuvant, then is there a point in the second opinion on the slides? I was borderline. But with the ED and incontinence and knowing that odds are once I started radiation I would most likely not improve I decided to wait and let my future PSAs decide for me.
Jeff
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goodlife
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Posted 2/21/2010 3:01 PM (GMT -8)
Mel,

I would say if you are considering adjuvant radiation, then it can't hurt.  If you are adopting the wait until .5 routine, then it may be a questionable exercise.  The $200 may be better spent as a donation to PC prevention.

It is my guess because of the ability to carefully select the best slides that represent your PC, as opposed to a biopsy where there is only a very samll amount of tissue that has been jammed into a needle, the odds of having a different grade is slim.  There are howver, some different variant result numbers that may be able to indicate agressiveness that if JH does them, may be a big help.

Obviously, it's all your show at this point.

 

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 2/21/2010 3:03 PM (GMT -8)
mel, there was nothing wrong with your question, something we all have had to think about.

my remark was generalized, and it pertained to me too.

certainly wasn't meant to offend, just speaking off the cuff.

david in sc
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mvesr
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Joined : Apr 2007
Posts : 823
Posted 2/21/2010 5:30 PM (GMT -8)
Compiler

I chose to get a second opinion from another Dr. The second Dr. had me send the slides to him and he told me he was not going to consider operating on me if I didn't have prostate cancer. By the way the second read on the slides were the same as the first. The second opinion was because I didn't trust my first uro and neither did my wife or son. So there you have it.

Good luck to you

Mika
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Steve n Dallas
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Joined : Mar 2008
Posts : 5242
Posted 2/22/2010 3:36 AM (GMT -8)
You mentioned sending the paperwork for a second optinion...Didn't you mean you'll be sending samples/slides/body parts to be retested for the second opinion?
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MrGimpy
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Joined : Jul 2009
Posts : 504
Posted 2/22/2010 4:40 AM (GMT -8)
I second Steves remarks,

What would sending the paperwork do as for a second opinion. I could see you sending the actual slides or frozen cells to get them reviewed. Seems like you could only get the same same reading from a "reading" only sample, How realistically could they differ ?

I also would wait to see what the post-op PSA shows first before taking any other action.
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LV-TX
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Posts : 966
Posted 2/22/2010 6:02 AM (GMT -8)
General question....do they even keep those tissue samples? It would seem to me that they would somehow maybe take a picture of the microscopic samples for viewing later on...but the actual samples are destroyed and not available as they would deteriorate rapidly. I am sure that the cost of trying to preserve tissue samples would only be done under teaching or study conditions and not the general rule of thumb for pathology.

So having a different pathologist look at a pictures of tissue samples could conclude a different reading, but not likely.
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LV-TX
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Posts : 966
Posted 2/22/2010 6:08 AM (GMT -8)
Mel...one more thought...check to see if your particular lab that performed the pathology was reviewed by more than one pathologist. In my case my pathology was read by several doctors independently and then signed off by the head pathologist. In essence I had several path opinions with a final conclusion based on those independent readings.
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Tamu
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Joined : Oct 2006
Posts : 626
Posted 2/22/2010 6:43 AM (GMT -8)

When I was diagnosed with PCa the local urologist did not do a very good job of informing me about treatment options and was promoting open surgery because that is what he did.  I had always told myself if I ever had a serious health issue I would get a second opinion from a major medical center.  That is what I did.  I went to Vanderbilt Medical Center.  Their protocol is to have the slides read by their pathologist so my slides were read again and they came back with atypical cells but no adenocarcinoma.  The Vanderbilt urologist explained this happened 3 or 4 times a year and when this occurred the protocol was to send the slides to Dr. Jon Epstein at John Hopkins.  My Vanderbilt urologist explained to me in the years they have been following this process when Dr. Epstein read the slide as having adenocarcinoma the post op pathology had always confirmed he was right.  In my case Dr. Epstein did read my slides as having adenocarcinoma.  I have read somewhere in one instance a prostate was removed based upon a biopsy and it did not have cancer. 

Tamu

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Herophilus
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Joined : Sep 2009
Posts : 742
Posted 2/22/2010 7:52 AM (GMT -8)
Pathology slides once fully fixed should be available for years to be reviewed. Hero
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MrGimpy
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Joined : Jul 2009
Posts : 504
Posted 2/22/2010 8:35 AM (GMT -8)
Hi Here,

What do you mean by fixed ? Does that mean they are able to be transported to other labs. Does that also mean that there is repository that hold our slides for years ?
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goodlife
Veteran Member
Joined : May 2009
Posts : 2692
Posted 2/22/2010 8:41 AM (GMT -8)
yes, they are physically transported to other labs. Slides have a glass disc put over the specimens, with a glue type agent that seals them.
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compiler
Veteran Member
Joined : Nov 2009
Posts : 7698
Posted 2/22/2010 9:14 AM (GMT -8)
For those who asked, I was referring to the paperwork to send/fax to Ford Hospital to send my slides to Jon Epstein at Hopkins.

Mel

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zufus
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Joined : Dec 2008
Posts : 3149
Posted 2/22/2010 10:22 AM (GMT -8)
Mel- do whatever your desire to do is, nobody else walks in your shoes. Let me say to others that PRIOR to making a decision upon any major modality/treatment that is non-reversible get the best friggin pathology you can get, in straight words the handful of real experts whom know this is the best thing you do for yourself...the others are wanna be'sssss...wanna get best info for prognosis??? Maybe in some cases it doesn't matter...how do you know if you are 'some cases or not'???  Mel I told you see Bostwick first thing on pathology(posted on this forum) and I noticed Dr. Strum replied recently to you and said exactly why and what was lacking on your prior pathologies, that  Dr.Strum  noticed and picked up on, right away. Esptein and Oppenheimer etc. are some of the few others that are worthy. I think that Epstien does not do ploidity analysis, but you probably aren't looking for that...but if you are going this far, why not spend a couple more bucks to know.

Also(for others), even if it costs additional money (and it does for optional pathology things like DNA ploidity analysis and some other things they can do)...maybe pay for it and find out more about what is your dragon version of PCa...there are not only many Gleason scores, but many variants types of PCa that the local patho-doc probably would not even notice the difference, they don't come with a tag on them, and ploidity analysis is more important than you might know...especially as to how you will fair long term...or the value of subsequence drugs and therapies that might be used against your case of PCa.

Enter the twilight zone of PCa...jungle...limbo land

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Jerry2
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Posts : 553
Posted 2/22/2010 10:47 AM (GMT -8)
 

I wish I had requested it right after my surgery my post-op report came back so good and I was so relieved I did not even think about it Gleason 6 organ confined etc.  Nine months later PSA started to go up and they relooked at the slides.  Now they say the pathologist made a mistake and it is a Gleason 8 very aggressive, if I knew that at the time it might of changed the way I did my follow up treatment.  I then also had it sent to the best Johnathan Epstein at John Hopkins, he came back also a Gleason 8 and said it was a slam dunk 8 there should never have been a question.  So I agree with you get another opinion from the best then go from there.  I waited a year for salvage radiation because they said I had a slow growing cancer and radiation not necessary, then it turns out I have a very aggressive cancer and  who knows what could have happened in that year.

Jerry1 

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compiler
Veteran Member
Joined : Nov 2009
Posts : 7698
Posted 2/22/2010 12:12 PM (GMT -8)

Regarding costs, I just heard from my insurance company. They do cover second opinions. In this case, Epstein is out-of-network so insurance covers 70% (it would be 90% in network).

As I said, I would pay for this out-of-pocket if it wasn't covered. With some of these situations the information CAN prove invaluable.

Mel

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