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2nd Opinions (on biopsy and/or prostatectomy specimen) slides

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Posted 1/21/2017 10:57 PM (GMT 0)
Hi everyone
I read a lot about people getting 2nd opinions on their slides, and wonder whether the expertise to be found at the best US labs is also available to folk outside the US?
For example, I see a lot on this forum about a lab called Bostwick, who it would seem are the foremost prostate pathology experts.
Does anyone know whether it is possible to send them specimens from overseas for them to look at, and if so, how much it might cost? I'm not even sure our post system would let us send medical 'waste' (if you could call it that!), by mail overseas, but I'd love to find out.
Any clues at all?
Thanks ever so.
Jaybee
Posted 1/21/2017 11:18 PM (GMT 0)
Great question. You didn't say where you are, but I don't really have an exact answer for you anyhow.

BUT, what I would do is to contact Dr Epstein's lab and have a short conversation with them...explain where you are and what you are looking for. I'd bet they will either assist you with navigating international shipping constraints, or they might tell you someone in your region that could perform pathological 2nd opinion services in your region.

pathology.jhu.edu/department/services/secondopinion.cfm
Posted 1/21/2017 11:33 PM (GMT 0)
I think one can overnight the sides internationally (call DHL for cost), but OZ laws are very strict - I don't know if they'll allow return? Google Epstein or Bostwick second opinions prostate biopsy for their email to ask your question.

I think Phillip Stricker gives second opinions in OZ, doesn't he?

I'm assuming this is NOT for GG, right? GG had surgery and has a whole mount specimen for the pathologists to look at. There's seldom any need for a second opinion when they can see the whole thing. Biopsy slides are from cores that may intersect a locus of cancer at a weird angle that distorts its appearance.
Posted 1/21/2017 11:49 PM (GMT 0)
Hi Allen
It is indeed for GG! I understand (although please correct me if I'm wrong), that opinions can vary wildly between pathologists, even with an entire prostate to carve up, so thought if we were going to get any 2nd opinions, it may as well be from the best!
Also the good folk in the US have access to some very useful and informative advanced testing including
DNA ploidy analysis and biomarkers, which we don't have here; e.g. ProstaVysion at Boswick, which might be very useful for guiding any future treatment decisions. It would be great to have this info available if we were able to obtain it. Mind you, I imagine it would almost certainly be cost prohibitive; especially with the ordinary exchange rate at the moment!
Posted 1/21/2017 11:56 PM (GMT 0)
It's really a waste of money with whole mount pathology. I'm not saying the opinion would never change, but it would be VERY rare. Opinions do NOT vary widely on whole mount pathology.

All those other tests are just a good way to separate you from your money, imho. What decision are you trying to make for which you need more information?
Posted 1/22/2017 12:10 AM (GMT 0)
No decision yet (thankfully)! But Mr Stricker has stated (on his web info) that both surgery AND radiotherapy have very low cure rates for men with PSA >20 (from what I've been able to glean, we're looking at something in the region of 6-10%), so I'm trying to stay one step ahead in anticipation of any further tx that may be required. If we're armed with a full genetic profile, I'm thinking it may be useful in some way; particularly as it would seem almost certain GG's brother is prone to the same condition. Perhaps a dodgy gene in there somewhere?!
Very much (as always) appreciate your sage advice Allen; it's probably just my OCD-ish need to be "doing something" rather than nothing, as we go from test to test... Maybe this gets easier - I don't know!
Thanks again,
Jaybee
Posted 1/22/2017 6:22 AM (GMT 0)
Hi Jaybee,
Sometimes I too feel like I'm trying to stay ahead the Drs or second guess too much.
For sure Gary thinks I do. But I look at it this way: They see hundreds, thousands of patients and are expected to have the best treatment for every single one of them as top priority. In our case, the MO doesn't specialize in PCa, but treats every cancer patient.
My only interest is Gary...don't have all those others to worry about. So if the Dr has to spend a little time explaining rationale for tx or answer questions based on my research, so be it. Your a good advocate for GG, smart as heck and driven to assure he beats this! I hope and pray that he will be able to put PCa in the rear view for good, but if not, you will be ready to kick its arse.
Beth
Posted 1/22/2017 7:27 PM (GMT 0)
Jaybee-

I think we may have discussed this before, but elevated PSA when it arises because of urinary retention due to TZ tumors does not have the same prognostic significance as an elevated PSA that is not attributable to other causes. What Dr Stricker says on his website is true generally, but not specifically. Every case has to be evaluated on its own peculiarities.

One cannot stay "one step ahead in anticipation of any further tx that may be required." That path leads to needless anxiety, and dangers of overtreatment. One can only take it as it comes. I understand how your anxiety is pushing you towards expensive and useless diagnostics, but I think it's much more important to focus on what one does have control over.

Let's say, for example, that you have an expensive genetic test done. What on earth would you do with that information? Prophylactic pelvic exenteration? Maybe someday, CRISPR technology will lead to gene-repair therapies, but we are many years, if not decades, away from that now. All the expensive test would do is raise your anxiety level (which is already high). Diagnostic tests should only be used to aid known treatment decisions. The treatment decision to be made comes first, and then one looks at tests to support or deny that treatment.

I very much understand the feeling of wanting to do something, rather than nothing. This is where the things you can control - diet, exercise, and especially, attitude - come in.
Posted 1/23/2017 1:08 AM (GMT 0)
Thank you Allen. I guess there's a lot of curiosity there too; particularly with GG's brother now almost certainly being in the same boat. i.e. do they carry the BRCA1 or 2 gene (for example?). Not that knowing will help an awful lot, of course.
And yes - doing really well with diet, but an epic fail with exercise - I can't get Mr GG off that couch much at all. We have Australia Day public holiday this week, so heading down the coast for a spot of surf casting and hopefully some swimming if the weather's kind to us. The biggest calorie burn all year! turn
Have a great week.
Jaybee
Posted 1/23/2017 2:02 AM (GMT 0)
Big wast of time.... The pathologist that did the original look at my slides:

https://medicine.yale.edu/pathology/people/peter_humphrey.profile

actually co:authored a book with Dr. Epstein.

Some members of this site would tell you that he is not an expert... which is a bunch of hyperbole at best.

Go to a major cancer care center and you don't need to worry about this extremely overblown, fanatical and obsessive recommendation.

Hero
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