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Advanced Prostate Cancer

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Malecare support group members getting a second opinion on all imaging including MRI's

Darryl profile image
DarrylPartner
21 Replies

Sometime around 2002, Malecare started telling our support group members to consider getting a second opinion on their biopsy from a pathologist at a different/second facility. This seemed a no-brainer common sense thing to do (if you could afford it). Today, after several years of thought and conversation with our members, we are telling Malecare support group members to consider getting a second opinion on all imaging including MRI's.

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Darryl profile image
Darryl
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21 Replies
Darryl profile image
DarrylPartner

A second opinion is different than getting a second biopsy or second MRI. Both the biopsy's and the imaging can be sent for second opinions via Fed Ex, UPS, DHL, etc. Indeed, imaging can be sent via email. You don't need to return to your doctor or hospital or clinic.

Justfor_ profile image
Justfor_ in reply toDarryl

Hi Darryl, Could you provide some mpMRI readers particulars, i.e. contact info and cost? I have two diverging reports and looking for the tie-breaker. TIA.

Tall_Allen profile image
Tall_Allen

I never recommend a second opinion on a biopsy from just another facility. There is only ONE facility I recommend: Epstein's lab at Johns Hopkins. He is the Gold Standard, and everyone acknowledges his reading as definitive. If one messes around with some random pathologist, you are left in the quandary that Dr.A says it's X and Dr.B says it's Y - which is right?

Similarly, mpMRIs are frequently misread (I think that's what you meant when you wrote "MRI"). There is huge inter-observer variability among radiologists depending on their level of expertise. It is not so much a "second" opinion as getting a good reading at all. The patient should look at the radiologist's credentials first. Here's my list of qualified mpMRI radiologists in North America- they are the authors of PIRADS 2.0:

Jeffrey C. Weinreb: Yale

Peter L. Choyke, Baris Turkbey: NIH

Masoom A. Haider: Sunnybrook, Toronto

Katarzyna J. Macura: Johns Hopkins

Daniel Margolis: Weill Cornell

Mitchell D. Schnall: UOP

Clare M. Tempany: Harvard

Sadna Verma: U of Cincinnati

Aytekin Oto: U of Chicago

Alberto Vargas: MSK

Alexander Kagan: Mt. Sinai

Darryl profile image
DarrylPartner in reply toTall_Allen

Epstein is a colleague and has been reviewing Malecare member's biopsy's for many years. Of course, he is super and readily accessable to our members....even at 6AM. But, of course, not everyone will want his opinion. What is essential is to have at least two opinions from unrelated pathologists, which is a challenge. The message Malecare offers is simple. Get your biopsy read at two different facilities. The same for second opinion on imaging (of course, not from Epstein as he is a patholgoist). Even Epstein can make a mistake, hence, getting two opinions, rather than just one, no matter how golden the doctor may be.

Tall_Allen profile image
Tall_Allen in reply toDarryl

I have never met a doctor (Uro or RO) who doesn't want Epstein's opinion and take it as definitive. I don't agree that getting the biopsy read by two facilities adds any value for the patient - it will only result in confusion when they differ. Epstein doesn't make mistakes - his lab only looks at prostate slides and they have an internal review process.

treedown profile image
treedown in reply toTall_Allen

What would you say if two facilities/pathologists agree, which is what happened in my case?

Tall_Allen profile image
Tall_Allen in reply totreedown

I would still take Epstein's opinion. Before Bostwick retired, I would have taken his too. There isn't a pathologist in the world who doesn't accept his opinion. In fact, he routinely leads the International Society of Urological Pathology (ISUP) Consensus Conferences that define Gleason grading and detection of prostate cell abnormalities.

treedown profile image
treedown in reply toTall_Allen

Thanks, I would have asked for Epstein had I found this forum at that time but a 3rd opinion a year into treatment seems unlikely to change said treatment. Anything going forward I will make sure I get recommendations for reading scans and whatever else comes my way.

Curehunter profile image
Curehunter in reply toTall_Allen

I've had two MRIs recently in the UK. Does Epstein provide 2nd opinions for UK patients and if so how do I contact him. Thanks.

Darryl profile image
DarrylPartner in reply toCurehunter

Epstein is a pathologist and typically doesn’t offer opinions on MRIs. A shame this post was diverted to biopsy discussion. We’re interested in discussing MRI second opinions (and your thoughts). I suggest you reach out to Caroline Moore MD at UCHLondon. I just now had a Zoom with her..she can guide you.

Tall_Allen profile image
Tall_Allen in reply toDarryl

It's really the same issue. Getting a second opinion from any random specialist is, imho, a waste of time and money, and will cause more problems than it solves. Everyone has an opinion. It doesn't even matter if the second opinion agrees with the first - they may both be wrong, based on outdated info, or biased by the hammer/nail problem.

When I was considering prostatectomy, I talked to 3 urosurgeons - all excellent ones by reputation. Each repeated the same misinformation: there was no good salvage possible after radiation, that ED rates were lower than the published data, and that their own results were better than the published data. They also all neglected to mention risks of penile shrinkage, climacturia, Peyronie's, and orgasm issues.

What we want is an opinion we can take to the bank. Here's an article that may be useful to patients:

prostatecancer.news/2017/12...

Tall_Allen profile image
Tall_Allen in reply toCurehunter

Neither Darryl nor you have made it clear whether you are talking about mpMRIs or just T1 MRIs. If it's just an ordinary T1 MRI, any good radiologist can read it, If you are talking about an mpMRI, I suggest you contact Anwar Padhani at Mount Vernon Cancer Centre, Middlesex; Alex Kirkham or Clare Allen at University College London Hospitals.

Schwah profile image
Schwah in reply toDarryl

I must agree 100% with TA here. I’ve spoken to numerous doctors in the PC arena. They all have different opinions on almost everything PC. But the one thing they all agree upon universally is that Epstein is the gold standard for prostate cancer pathology. Why go anywhere when you can just as easily go to the best for a few hundred dollars.

Schwah

ProstateWhisperer profile image
ProstateWhisperer in reply toDarryl

If you send your biopsy slides to JHU, does Epstein actually read them or one of his assistants? I sent mine and the report came back signed not by Epstein but by another pathologist in the lab.

Tall_Allen profile image
Tall_Allen in reply toProstateWhisperer

His lab only does prostate pathology. He supervises it and trains his team. A typical pathologist at a hospital has to be able to identify pathology in everything - blood to skin to every organ; he doesn't have the time or experience to become an expert in all things prostate.

GoBucks profile image
GoBucks in reply toTall_Allen

How about 2nd opinions for reading a auximin PET scan? Is that a thing? Is there an "Epstein" for that?

Tall_Allen profile image
Tall_Allen in reply toGoBucks

Which kind of PET scan?

GoBucks profile image
GoBucks in reply toTall_Allen

Axumin PET scan

Tall_Allen profile image
Tall_Allen in reply toGoBucks

David Schuster, a radiologist at Emory, is the guy who invented it.

j-o-h-n profile image
j-o-h-n

I second your opinion.........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/06/2020 6:22 PM EST

GeorgeGlass profile image
GeorgeGlass

I'm not siding in one direction or the other here but my reading from Epstein led a radiologist to get happy by the 4+3 score with (95% as a 4) Because that was below the 4+4 NCCN score for high risk to do surgery, the radiologist was then excited because he could then recommend radiation without violating the NCCN guidelines. The radiation treatments were a failure and probably reduced my lifespan by several decades. It wasn't Epstein's doing but I just needed to tell my story when I read this article.

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