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Dr. Epstein - Second Opinions

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Posted 6/12/2018 7:10 PM (GMT 0)
I was previously diagnosed with Gleason 3+3 in 6 out of 14 cores. All small volume (3%/4%/6%/9%). My path report was from Kaiser Norcal. I sent the report to Dr. Epstein at JH for a second opinion. The report came back with no cancer, but ASAP and HGPIN (3 areas total). Dr. Epstein took my call this morning. Having the top prostate pathologist in the country taking your call is something. The first thing he said was "you don't have cancer". He did warn me about the possibility of both turning into cancer (40% was the number he used), but it beats having the Kaiser urologist requesting a RP shortly after my May 2018 diagnosis and telling me to schedule RP or radiation ASAP.

I know I'm not out of the woods. He did state an MT MRI is a better move than getting another biopsy in 3-6 months. He also stated AS is the way to go if cancer is present (assuming Gleason 6). This is my first post, but I've read this board for the past 3-4 months. Thanks to all for the great advice and support.

A long way to go, but better than my May path report from Kaiser. Lesson learned, get your report from an expert before acting on the initial report. Also time to switch from Kaiser to UCSF. Good luck to all!
Posted 6/12/2018 7:24 PM (GMT 0)
Great information. You have the luxury of time for future considerations. Always get multiple assessments in medical treatment. What a hack urologist rushing you to surgery. You should report him to the Medical Board.
Posted 6/12/2018 7:30 PM (GMT 0)
Thanks for the reply. I give credit to Dr. Epstein for even taking my call. Some doctors really do care. We sometimes think we are numbers in the system. I emailed him after my second opinion report and he responded in hours to call him this morning. I wish all the best.
Posted 6/12/2018 7:36 PM (GMT 0)
You don't get better than Dr. Epstein and his word is golden. Likely all you need to do is monitor your PSA. A consult with USCF would be good.

Andrew
Posted 6/12/2018 7:47 PM (GMT 0)
Yes, agreed on Dr. Epstein. He was generous with his time and answered every question. Your advice on monitoring is sound. Thanks.
Posted 6/12/2018 7:52 PM (GMT 0)
Hello DTT and welcome. Most of give the advice to new members to get a second opinion from Dr. Epstein and you are living proof of the value of doing so. In some of his writings Dr. E. comments about a small but significant percentage of biopsy reports that say "cancer" when none is present...and here you are.

We have also had a couple of members who had a G6 reading then had surgery only to have their post-op pathology show no cancer. Talk about a nightmare!

Anyway, I'm sure you will watch this and I'm very happy to hear your results.

Jim
Posted 6/12/2018 8:21 PM (GMT 0)
Congrats on your downgrade. I know you must feel relieved.

He did a 2nd opinion for me also and I had spoken to his assistant before sending the tissue and she mentioned that he usually comes in early around 6am so if I wanted to talk with him I should call early and he would answer his phone. I did and he did. He answered all my questions and I never felt rushed.
Posted 6/12/2018 9:29 PM (GMT 0)
Thank God for Dr Epstein. We have another member, (not here much any more but i do communicate with him regularly) who was diagnosed with G6, and when he sent the slide to Epstein, the second opinion said that it could not definitively be called cancer, and Epstein recommended a repeat biopsy. The repeat WAS G6. The member has been on AS ever since (about 2 years) and just had a PSA which was stable, in the low 3's where it has always been.

I too, had the opportunity to talk with Epstein, he was very gracious with his time. Glad for you that you did this.
Posted 6/12/2018 10:00 PM (GMT 0)
Congratulations! You snatched victory out of the jaws of defeat! Kudos to you for making the effort on your own behalf.
Posted 6/12/2018 10:16 PM (GMT 0)
Thank you - great board. I’m learning a lot from all of you.
Posted 6/12/2018 10:18 PM (GMT 0)
Congrats on this. I can remember someone here a few years ago that had a G6 diagnosis and had surgery. His surgical pathology showed no cancer! All the best going forward.
Posted 6/12/2018 11:26 PM (GMT 0)
Made my day!

And thanks for posting; good news is always welcome here.
Posted 6/12/2018 11:46 PM (GMT 0)
The BIGGEST mistake Kaiser made was recommending you for surgery with such a minimal diagnosis of G-6 PC..You were a candidate for AS even before the pathology mistake was discovered..When you add the two together, the surgery recommendation based on an inaccurate pathology report, that's time to move on....
Posted 6/13/2018 12:13 AM (GMT 0)
^^ Yup, huge fail ^^
Posted 6/13/2018 5:23 AM (GMT 0)
Wow, dodged a bad journey and regret! So glad you decided to figure things out and start asking your own questions on this disease. I had what maybe described as the opposite issue at Kaiser, they told me I had no cancer and to comeback in 6 months, even though my PSA was rising and PSA free was dropping. The doctor told me “he can’t do anything else because Kaiser won’t pay for it, I’m sure you are fine”. I switched to BSBC a couple of months later. Hopefully you can stay away from treatments for a very long time! Take care. -JR
Posted 6/13/2018 9:03 AM (GMT 0)
Evidence why we must advocate for ourselves. congrats!
Posted 6/13/2018 11:47 AM (GMT 0)
I just had my biopsy and am waiting for the results. What an eye opener your story is. It literally turns my stomach thinking about how it could have turned out. Hope you continue to have good health and wish you the best. Thanks for sharing your story.
Posted 6/13/2018 3:05 PM (GMT 0)
Epstein wrote the book on pathology....If he says you don't have cancer, then you don't.....You can bank on it.
Posted 6/13/2018 4:24 PM (GMT 0)
That would definitely be...what we call in my business...a save...big time...now if you ain't on the happy side of fitness...get moving.. concrats...
Posted 6/13/2018 5:05 PM (GMT 0)

ChrisR said...
Epstein wrote the book on pathology....If he says you don't have cancer, then you don't.....You can bank on it.


No prostate cancer in the (small, random) samples he examined. That’s good to hear, but don’t lose sight of the big picture: PC is a natural part of aging.
Posted 6/13/2018 8:10 PM (GMT 0)
So, just to split hairs..................

Normal59 said...

ChrisR said...
Epstein wrote the book on pathology....If he says you don't have cancer, then you don't.....You can bank on it.


No prostate cancer in the (small, random) samples he examined. That’s good to hear, but don’t lose sight of the big picture: PC is a natural part of aging.

Yes, we all are making our responses based on the biopsy data. I don't think anyone here made a blanket statement about any part of his un-sampled prostate.....and I don't think Epstein inferred that to him when he said it either.
Posted 6/13/2018 8:48 PM (GMT 0)
I only wish we had more stories like this one....very well done! Stay vigilant cool
Posted 6/14/2018 1:01 PM (GMT 0)
Hmmmmmm......do you think the pathology department at Kaiser is part of the Marketing Division? Certainly the urologist was drumming up business.
Posted 6/14/2018 5:55 PM (GMT 0)
DTT that is great news. I would love to have tried AS a little longer. Stay on top of your tests. I don't know if Kaiser is all that bad. Urologists want to do surgery. I just received a second opinion from John Hopkins. I wanted it because when MD Anderson Pathologists reviewed it upped me to a 4+3=7. I am happy to report that JH found I was 3+4=7 as I originally was diagnosed in Santa Fe. They upped my percentage 5% from 15% to 20%. I really do appreciate having a second opinion even though it won't change my treatment plan at all. Best Wishes!

A-B. BENIGN PROSTATIC TISSUE.

C. SMALL FOCUS OF PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE
GROUP 1), INVOLVING LESS THAN 5% OF ONE (1) CORE.

D. PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+4=7 (GRADE GROUP 2) INVOLVING
20% OF ONE (1) CORE. (30% GLEASON PATTERN 4).

E. PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+4=7 (GRADE GROUP 2) INVOLVING
20% OF ONE (1) CORE. (30% GLEASON PATTERN 4).

F. PROSTATE TISSUE WITH SMALL FOCUS OF ATYPICAL GLANDS, SUSPICIOUS FOR LOW
GRADE ADENOCARCINOMA.

-----------------------------------------------------------------~

Grade Groups range from 1 (most favorable) to 5 (least favorable).

Pierorazio PM, Walsh PW, Partin AW, Epstein JI. Prognostic Gleason grade
grouping: Data based on the modified Gleason scoring system. BJU Int,
volume 111: pages 753-60, 2013.

Epstein JI, Zelefsky MJ, Sjoberg DD, et al. A contemporary prostate cancer
grading system: A validated alternative to Gleason score. Eur Urol, volume
69: pages 428-35, 2016.
Posted 6/14/2018 9:18 PM (GMT 0)
Great news SantaZia. Moving from a 4+3 to a 3+4 might not change your treatment plan, but it should give you more confidence heading into your treatment. Thanks for all the great posts on this forum.
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