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Posted 11/5/2010 8:38 PM (GMT 0)
Sense my insurance does not seem to cover second opinions for a pathologist to re-read a biopsy. I read about a John Hopkins pathology report you can mail. Has anyone heard or done this? thought?
Posted 11/5/2010 8:44 PM (GMT 0)
Does you insurance cover a second look at the samples that were taken? That would make more sense.
Posted 11/5/2010 9:12 PM (GMT 0)
Johns Hopkins has what may be the most respected pathology labs with prostate cancer specialization. Here's one of their links, with contact info at the bottom: http://pathology.jhu.edu/department/services/consults/urologic.cfm
Call them to ask the cost of a 2nd opinion on slides.

Perhaps equally as respected in 2nd opinion readings of prostate cancer biopsy slides is Bostwick Labs. Here's their link: https://www.bostwicklaboratories.com/global/services/laboratory-services/second-opinions.aspx
Posted 11/5/2010 9:15 PM (GMT 0)
The accuracy of the Gleason score is absolutely vital, so it is prudent to obtain a second opinion.

Here is information on several sources of expertise:

Bostwick Laboratories [800] 214-6628
Dianon Laboratories [800] 328-2666 (select 5 for client services)
Jon Epstein (Johns Hopkins) [410] 955-5043 or [410] 955-2162
Jon Oppenheimer (Tennessee) [800] 881-0470
Scott Lucia (303)724-3470

This is a "second opinion" and should be covered by insurance/Medicare.
The cost, last I heard, was about $500. More if further tests, which might be prudent, are ordered.

The chosen lab can give instructions on shipment arrangements.

In civilized jurisdictions, those specimens are the property of the
patient and not the medic nor the lab. Sometimes it is necessary to
educate them on that point.
Posted 11/5/2010 9:20 PM (GMT 0)
I had the second opinion done by Dr. Epstein and John Hopkins. His reading for mine was 4+4=8 which was worse than the 3+4=7 first opinion done by Quest here in the Chicago area. That changed my treatment from just having seed implants to additionally having 5 weeks of external beam radiation and then seed implants. The second opinion by John Hopkins is definitely worth it even if you have to pay for it. I think it was around $300 for mine but insurance did pay for mine.
Posted 11/5/2010 9:34 PM (GMT 0)
Jon Epstein was a good choice for the second opinion.

A word to the wise: A Gleason 8 is "high-risk." Local tx such as that which you're contemplating may not be curative.

There are blood tests that can be helpful.* I recommend consulting a true cancer expert, a medical oncologist; preferably one well-experienced in tx of PCa.

*Prostatic Acid Phosphatase (PAP)
Chromogranin alpha (CGA)
Carcinoembryonic Antigen (CEA)
Neuron-Specific Enolase (NSE)
Posted 11/5/2010 11:08 PM (GMT 0)
So far the info I have is 4.4 psa and gleason 4+3 =7 . I know there were 10 samples and 2 postitive. Not knowing what to ask on the first doctor appointment. I am doing alot or reading. Now having a million question. Thanks so much to this site, everyone has answer alot of questions. I do think it would be wise to have the biopsy re-read. I will see how to go about getting a copy of the biopsy. My other question is how long to wait for treatment. I know there is no magic answer. But the radiologist doctor, seemed to think the within the first part of next year would be ok ( mar-may) not sure we will wait that long but looking for thoughts/
Posted 11/6/2010 1:51 AM (GMT 0)
You should seriously consider Dr. Epstein for a second read.  Not only is he the world's foremost expert, but he will tell it like it is, and more importantly, will respond within hours with email responses to questions most doctors wouldn't dare give opinions on without an in person consult (and payment of a fee).  He second read my biopsy pathology and after my surgery pathology, I asked him about a reread and radiation, and without hesistation, he gave me a straight answer that I felt I could rely on ("don't do it").  And BTW, don't be surprised if you don't get charged and never see a bill from him for his service.  He never asked for a dime, I never saw an insurance EOB, and he truly is there to help and could give a rat's ___ about the money.  His wife is another world renowned pathologist at Hopkins and she is equally fantastic.  The other labs listed by prior posters are great, but this man is the best of the best and is completely accesible despite his position and skill.  Send your slides immediately.  You wont regret it, even if his assessment is worse than the initial pathology.
Posted 11/6/2010 1:37 PM (GMT 0)
 

I also agree on the second opinion, I had three done on my biopsy slides, but after surgery I was so happy with the path report of a Gleason 6 I did not get another opinion until my PSA started going up again.  I then sent the slides to Johnathan Epstein and it came back a Gleason 8 which as you all know is a big difference.  I waited almost a year to find out this news and could have affected my treatment if I knew at the time.

Jerry1

Posted 11/6/2010 3:59 PM (GMT 0)
Jerry:

WOW-- from a G6 to a G8. That is a shocker. Sounds like the first pathologist screwed up big time.

I second the comment about Dr. Epstein. He did a second opinion on my pathology. It came out the exact same as the first. He actually called me with the results. He also responds to emails quickly. I really appreciated that. I did get a bill (my insurance covered most of it -- I think the charge was about $250-$300 and my part was 10% or 20%).

Mel

Posted 11/6/2010 6:23 PM (GMT 0)
So, on this subject, what do you do, if the 2nd opinion is way different than the first? Which one do you believe? Do you go for a third, and take
2 out of 3 that agree, or what if a 3rd shows something different still? Think this is a legitimate question.
Posted 11/6/2010 6:36 PM (GMT 0)

Purgatory said...
So, on this subject, what do you do, if the 2nd opinion is way different than the first? Which one do you believe? Do you go for a third, and take
2 out of 3 that agree, or what if a 3rd shows something different still? Think this is a legitimate question.

Good question although I've never seen a +2 upgrade before. So I doubt it happens very much. But in this case I would get a 3rd.
Posted 11/6/2010 9:24 PM (GMT 0)
ziggy,

i had never seen a +2 upgrade either. when you look at the pictures of type 3 cells and type 4, its hard to believe that the first reading missed it by so much, if the gleason 8 is valid, its a horse of a different color.

i went from a 4+3 to a 3+4, but in reality, my cancer has acted at least like a 4+3 with known velocity issues all along. makes me wonder if my "downgrade" was valid.

david
Posted 11/6/2010 11:30 PM (GMT 0)
Purg:

Regarding your most legitimate question.

Are you also saying (ie: implying) that one should not get a second opinion because it might differ from the first opinion?

It seems to me when talking about something of the magnitude of PC, we want to get it right. So, a second opinion is in order. I'm not sure what I would have done if the second opinion I got from Jon Epstein at Hopkins differed from the first. I probably would get a third opinion.

In many cases, it is a moot point. Specifically, would you treat a G4+3 and differently than a G 3+4 (assuming that was the only difference).

Mel

Posted 11/6/2010 11:58 PM (GMT 0)
Mel:

Your words "Are you also saying (ie: implying) that one should not get a second opinion because it might differ from the first opinion?"


 

 But it seems like I can't say a word without you nit-picking or trying to second guess what I said. In my post, I didn't imply anything about 2nd opinions, I didnt even offer my opinion on the subject. You read way too much into what I say.

On the 4+3 vs. 3+4 Gleasons, there are 2 distinct schools of thought. Some say it makes no difference, others say that 4+3 should be treated like a Gleason 8, because of the higher per cent of type 4 cancer cells. There's even a school of thought that feel that all Gleason 7's are dangerous because of the "4" element. In my personal case, I had quick BCR, considering that I was a Stage II case and a Gleason 7.

Don't get me wrong, I don't care if you agree or disagree with me on any post, no ego problem here. All any of us has, is personal and very subjective opinions, nothing more, nothing less

David in SC

Post Edited (Purgatory) : 11/6/2010 7:05:55 PM (GMT-6)

Posted 11/7/2010 12:42 AM (GMT 0)
The more I read on this forum, the more I'm coming to the conclusion that no one should ever feel "safe" or "cured" based on pathology results, whether from the initial biopsy or the pathology of the actual gland after surgery. I'm not sure there's such a thing as "getting it right," because there's frequently no consensus about what "right" might be. In my case, I won't have my first PSA test after surgery until early January, even though the surgery was Aug. 20th and the pathology was pretty good, so I'm enjoying blissful ignorance at this time. I'll be sweating it, though, come the new year.

Also, I'm not surprised that conversations occasionally get contentious here. We're all dealing with varying levels of worry, anxiety, and pain. We all need to remember that when formulating comments, and when reacting to what others have said.

My wife understands why I visit the forum so frequently, but she does worry that my prostate cancer is becoming something of an obsession. She may be correct, but there's much more I'd like to learn about the way this cancer operates.
Posted 11/7/2010 1:01 AM (GMT 0)
Ya know, we are all in this together and the last thing we need is infighting.  We are all trying to figure out things that the best science, literature, and physicians simply can't answer.  So we can debate and challenge to the end, and we can all take matters into our own hands and demand second and third opinions if we don't feel comfortable with the results.  In fact, that should be the "patient standard of care."  So whether it's an unusual second opinion or first or third, the bottom line is that we're all trying to beat this disease, and part of that is the emotional part of having cancer.  Bottom line.  So, please, get your s--t together for all of us.  We don't need the negativity.  And yes, you can look at my posts and complain that I'm a relative newbie but I've read everything that's written on the subject, and, frankly, I don't agree with some of what's said.  I am all in favor of freedom of speech, but in this context, some additional respect for others is required.  Send your personal attacks through personal emails.  Otherwise, we don't need it here.
Posted 11/7/2010 2:33 AM (GMT 0)

klains said...
So far the info I have is 4.4 psa and gleason 4+3 =7 . I know there were 10 samples and 2 postitive. Not knowing what to ask on the first doctor appointment. I am doing alot or reading. Now having a million question. Thanks so much to this site, everyone has answer alot of questions. I do think it would be wise to have the biopsy re-read. I will see how to go about getting a copy of the biopsy. My other question is how long to wait for treatment. I know there is no magic answer. But the radiologist doctor, seemed to think the within the first part of next year would be ok ( mar-may) not sure we will wait that long but looking for thoughts/


Just to be clear, you do not want the "biopsy re-read.". You want the actual tissue samples to be examined by a pathologist who specializes in prostate cancer evaluation. I had mine confirmed by three different labs and my initial pathologist trained under Epstein at Johns Hopkins. This thread contains two great reccomendations. Please follow them. No matter what course of treatment you choose, you will be altering your body for the rest of your life. You need to make informed decsions.
Posted 11/7/2010 7:53 AM (GMT 0)
I think you have had some very good advice and echo mycroft in particular on the importance of getting the best pathologist you can find to examine your biopsy material.

What to do when experts differ. That's the problem faced by one of the men who has shared his story on Yana - he posts as DAVID M and you may be interested in reading what he has to say.

A number of the other stories of men who chose ACTIVE SURVEILLANCE are indexed at this link. As you read through threse stories you get a good feel for the vagaries of the biopsy procedure.
Posted 11/7/2010 1:45 PM (GMT 0)
 

Just to add to the discussion when I had my inital biopsy 12 cores it came back a Gleason 8 sent it for a second opinion and they agreed it was a Gleason 8.  That is why I went fairly quickly for the surgery because at my age at the time of 69 if it was a 6 I might have done watchful waiting.  After my surgery by one of the top robotic surgeons in the country my Pathology came back a Gleason 6 he said it happens some times once they have the whole gland to test.  I was so happy never sent it for another opinion was even a little mad at myself for going through the surgery and the problems I had for a Gleason 6 at my age.  Well goes to show you can never be too careful with this monster.  My PSA after surgery remained undectable for almost a year then started creeping up and up.  That is when the surgeon sent my slides for another look by another one of their pathologist at the hospital.  Came back an G8, I then had them send the slides to Jonathan Epstein to confirm and it came back a G8.  That is when I knew I was screwed.  I guess looking back when the biopsy said 8 and the final path report said 6 I should of known something was up but I guess I just wanted the news to be good.  I was also charged from John Hopkins but was a small amount and was covered by Medicare.

Jerry1

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