I didn't get a 2nd opinion on my biopsy slides but would have if I had read this article

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April6th
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Date Joined May 2010
Total Posts : 264
   Posted 12/16/2010 9:37 PM (GMT -6)   
Here is a convincing (and interesting) article on reasons to get a 2nd opinion on biopsy slides. It points out the difficulty of an accurate diagnosis.

http://www.hopkinsmedicine.org/hmn/F02/feature2.html

My main take-away is that Epstein said that 35% of the slides he has regraded got a different Gleason than the initial grading somewhere else.

Important, life changing treatments are decided on based on our biopsy results.....I didn't realize how difficult the grading is.

Dan

fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 12/16/2010 9:51 PM (GMT -6)   
I got a second opinion from Dr. Epstein and it changed my treatment plan from just seeds to IMRT and seeds. I'm glad I did it.
age 57 2/2010
PSA 8.2 2/2010
biopsy 2/2010 - 2 of 8 left & 2 of 8 right positive, Gleason 3+4=7
attended support group - advised to get a second opinion
second opinion on pathology from Johns Hopkins 4+4=8
PSA 15 4/2010
5 weeks IMRT 4/2010-6/2010 at Copley Hospital in Aurora, IL
91 palladium 103 seeds 7/2010 at Chicago Prostate Center, Westmont, IL
PSA 3.97 10/2010
no ED or incontinence

ChrisR
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Date Joined Apr 2008
Total Posts : 825
   Posted 12/16/2010 9:51 PM (GMT -6)   
This is exactly why I went to 3 place for a dx.  and also why I went to Johns Hopkins in the end.  Johnathan Epstein is without a doubt the best pathologist in the world.  If he tells you what you have, you can believe it.

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 12/16/2010 10:09 PM (GMT -6)   
I had my biopsy slides sent to Epstein for a second opinion. Gleason didn't change (G6), and the only changes were relatively minor (slight difference in % of cancer in cores)......but I had piece of mind knowing where I stood as I moved on to weighing treatment options.
 
Arnie in DE

Tim G
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Date Joined Jul 2006
Total Posts : 2301
   Posted 12/16/2010 11:31 PM (GMT -6)   
I, too, had my biopsy slides read by Dr Epstein at JH.  No change, but it was good to have the prostate cancer pathology expert's opinion. 

Fairwind
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Date Joined Jul 2010
Total Posts : 3747
   Posted 12/16/2010 11:34 PM (GMT -6)   
Getting a second opinion is always a good idea when you are in the netherworld between Gleason 1, 2, or 3...Is it cancer or not? But if your biopsy comes back with 4's and 5's in the Gleason score, any competent pathologist can grade those bad boys....

To me, the article read more like a sales pitch for Johns-Hopkins and the services they offer...Why not have your urologist send them the core samples right from the beginning and avoid the amateur local pathologist altogether?? Are we to see bill-boards going up touting pathologists like the car-wreck lawyers??

Steve n Dallas
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Date Joined Mar 2008
Total Posts : 4829
   Posted 12/17/2010 6:25 AM (GMT -6)   
When you get a second opioion that is different from the first - how do you know which one is more accurate? Don't you have to get a third opinion and then do the averaging thing?

Tudpock18
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Date Joined Sep 2008
Total Posts : 4156
   Posted 12/17/2010 7:59 AM (GMT -6)   

Steve, no I don't think a third opinion and averaging is necessary.  The point is to have the slides read by an expert in prostate pathology if the first analysis was done by a garden variety pathologist.  As JT has pointed out many times on this forum there are real experts in most fields and people maximize their chances of success when using an expert.

I also think Fairwind makes an excellent point by wondering why a patient's urologist does not send initial biopsy samples to an expert to being with.  In fact, one of the things that helped me confirm that my urologist knew his stuff was when I inquired about my biopsy pathology.  He gave me a short lecture on the difficulty of reading prostate pathology and said that was why he always sends samples to Bostwick. 

Tudpock (Jim)


Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 12/17/2010 8:48 AM (GMT -6)   
Yeah why don't these expert docs know whom the real experts are and send pathology slides directly to them???? Well maybe these factors: ignorance (from experts-LOL), bias, agendad, maybe like to spread the wealth to local friends network i.e. golf buddies and such...how reassuring that it is all about the patients getting the best medical advice (lol) and not the money and friends gig! Same with sampling lymphnodes and useage of scanning methods and more....patients are getting less than they are paying for, but 'they' know best what is good for you?
 
I like Bostwick as the premier patho doc, he also does DNA ploidy testing and Epstein doesn't bother with it, Dr. Strum says ploidy testing is relevant and sometimes helps in assessing a patients protocols and future treatments. Bostwick also started up years ago with using the UMP3 now PCA3 urine testing for PCa...so he is more of a pioneer for patients, plus he used to have a weblink to the 18 variant types of PCa that he and perhaps some others had the foresight to know exist, now it looks like 24 types exist. Natually your local patho-doc would know at a glance which one you have (LOL)....it is much more complex than we are lead to believe. Here are the links to the variant types of PCa... suggest many of us likely are never properly identified, let alone Gleason scoring which they screw up on often enough.  I know this not reassuring to hear, you decide for yourself how precise all this PCa analysis actually is.
 
www.yananow.net/24Variants.pdf  (24 types)
http:/www.pcf.org/site/c.leJRIRorEpH/b.6113915/k.EA7D/understanding_the24_Types_   (link???)

www.webpathology.com/case.asp?case=23  (18 variants with photos and some info)

It is all so simple, so let's cut, zap, freeze, drug, microwave or whatever at the drop of a hat! Forget the nomograms, more complete assessments, why bother with Color doppler ultrasound and further blood work markers/analysis...give everyone a couple different worthless scans and a slap on the back and let's get the billing handled and on to the next gig, sorry I am sugar coating it  (laugh). 

Post Edited (zufus) : 12/17/2010 8:03:13 AM (GMT-7)


BB_Fan
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Date Joined Jan 2010
Total Posts : 1011
   Posted 12/17/2010 9:58 AM (GMT -6)   
I didn't get a second opinion on my biopsy, out of ignorence and trust is my docs at that time. My biopsy was 3+4=7 and I was told to take my time making a decision, no need to rush it. I then spent 3.5 months before surgery making my decision and finding a surgeon. Turns out I had a G8. Had I know I was an G8 I probably would have had surgery within 2 months. Needless to say, I have not been back to see that Uro. These guys know well the difficulties reading biopsies, it seems to me that they should either use a top shelf lab or suggest to you that you get a second opinion. Recommending that you take your time without also recommending a second opinion on the biopsy doesn't seem appropriate to me.
Dx PCa Dec 2008 at 56, PSA 3.4
Biopsy: T1c, Geason 7 (3+4) - 8 cores, 4 positive, 30% of all 4 cores.
Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%, nerves spared, no negitive side effects of surgery.
PSA's < .01, .01, .07, .28, .50. HT 5/10. IMRT 9/10.
PSA's post HT .01, < .01

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4156
   Posted 12/17/2010 1:35 PM (GMT -6)   
BB you said, "These guys know well the difficulties reading biopsies,..."
 
The scary thing to me is that I think that many of these guys DON'T know the difficulties reading biopsies, hence no concern about sending the pathology to a specialist.  Otherwise why wouldn't they send it to a specialist (unless zufus is correct about it going to their golf buddy).  We have seen data posted on this forum about the amazingly small number of prostate surgeries done by the average urologist during a year.  Given that, I don't think it would be surprising to learn that these less experienced prostate surgeons do not understand the importance of paththology expertise.
 
And, no guys...I'm not bashing urologists.  The finest doc I have ever known is my current urologist who assisted in my seeding.  I'm just continuing to make the case for treatment by PCa experts....not necessarily the few big names...but at least docs who understand a lot about this disease...
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 12/17/2010 11:06 PM (GMT -6)   
I guess there is some goodness in having a Gleason 9. Kind of takes the guess work out of it. Can't upgrade it too much. Rarely gets downgraded. Must be a pretty distinctive view in the microscope.

I did have them read 3 times, but didn't send them to Epstein. Wasn't much need to. Oh well, gotta be thankful for something.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 12/18/2010 10:28 AM (GMT -6)   
I'm with you Goodlife. I read all these posts about not knowing when you are having a BCR with the ultra sensitive PSA. I didn't have to worry about it. May PSA went from undetectable to .07 and then to .28. I had to scurry to set up SRT.

April6th
Regular Member


Date Joined May 2010
Total Posts : 264
   Posted 12/18/2010 12:53 PM (GMT -6)   
Well, the primary reason I didn't get a 2nd opinion on my biopsy slides was that I didn't think my treatment choice would have changed if I went from 3+4 to 3+3 (good news) or from 3+4 to 4+3 (bad news). I don't know if my logic was flimsy but it is what it is (and I think it all turned out OK...so far). I may have been mistaken in my belief that the number and % of cores with cancer was very unlikely to change with a 2nd opinion, just the Gleason of the core that had the cancer.



Dan
Here are some of my stats:
Age:54
Father diagnosed with PC at age 72 - wasn't contained to prostate when found in 1992.
My PSA rose from 3.2 to 5.1 over the course of 1.5 years with Free PSA at 25% for the last two tests.
DRE showed no evidence of tumor but Uro thought my prostate was a little large for someone my age
PCa diagnosed 4/6/10 after biopsy on 4/1/10
1 out of 12 biopsy samples was positive with 5% of biopsy sample cancerous
Gleason 3+4
Da Vinci surgery on 6/1/10
Pathology report shows cancer confined to prostate and all other tissue clean
PSA tested on 7/15/10: Zero Club membership card issued (trial membership with 90 day renewal)

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4156
   Posted 12/18/2010 4:04 PM (GMT -6)   

Dan, not to focus on you in particular, but a man with your stats is PRECISELY the kind of patient that could use a second reading and/or expert reading of the slides.  1/12 with 5% does not indicate much cancer, even with  G7.  In the article you cited that started this thread there is an example of a re-reading of slides that indicated that the original cancer diagnosis was WRONG!  There was a poster here a while back who had a positive biopsy but the post-surgery pathology showed no cancer at all.  Evidently the biopsy "got it all"....or maybe the first lab who read the pathology was incompetent...???

I mean, what if the re-read by Epstein or Bostwick or other expert showed no cancer as in the case described?  Surely this might have changed your treatment options.  Also, what if a re-read indicated G6, 1/12, 5%?  Even an ardent surgeon might have suggested waiting for awhile.

There are many good reasons to make sure that the initial pathology is right...this example is just one of them.

Tudpock (Jim)


Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

April6th
Regular Member


Date Joined May 2010
Total Posts : 264
   Posted 12/19/2010 8:56 AM (GMT -6)   
Jim,

Right after I got my initial biopsy results back and considered getting a 2nd opinion, the thought of getting a 2nd opinion that said 'no cancer' hadn't even entered my mind. I guess I was in that initial "Oh h#ll, I have cancer" mental haze and was focused on the worst case scenario instead possibly not having cancer at all.

Neither of the two doctors I consulted with after my diagnosis suggested a 2nd opinion on the slides. (I didn't ask them about it either). I haven't quite sorted out whether I believe doctors should (from both a moral and best practices viewpoint) suggest or even require a 2nd opinion on the biopsy slides, considering the wide interpretation of the tissue samples. The cynical side of me wonders if doctors don't push for 2nd opinions on the biopsy slides because it would add confusion and delays to the treatment process. But on the other hand, I feel that my doctors treated me with my best interests in mind (pointing out the different treatment options besides the one they offered) instead of using the hard sell to push me into their treatment offering.

Dan
Here are some of my stats:
Age:54
Father diagnosed with PC at age 72 - wasn't contained to prostate when found in 1992.
My PSA rose from 3.2 to 5.1 over the course of 1.5 years with Free PSA at 25% for the last two tests.
DRE showed no evidence of tumor but Uro thought my prostate was a little large for someone my age
PCa diagnosed 4/6/10 after biopsy on 4/1/10
1 out of 12 biopsy samples was positive with 5% of biopsy sample cancerous
Gleason 3+4
Da Vinci surgery on 6/1/10
Pathology report shows cancer confined to prostate and all other tissue clean
PSA tested on 7/15/10: Zero Club membership card issued (trial membership with 90 day renewal)

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4156
   Posted 12/19/2010 9:36 AM (GMT -6)   

Dan, I understand and I'm sure you made the best decision with the information available to you at the time...that's all any of us can really do.

But this thread that you started provides a real service by pointing out that getting initial pathology read by an expert CAN make a difference in a very important decision.

Tudpock (Jim)


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 12/19/2010 10:11 AM (GMT -6)   
I agree with Tudpock, this is a really great thread. Very interesting.
Hero
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