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Very interesting journey for this Yananow/patient~Epstein wrong?~patient did not rush~wisely

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Posted 3/8/2009 7:32 AM (GMT -6)
I am not posting this to make Epstein look bad, he is considered one of the few select top pathologists in PCa evaluations, but this patients case is not typical and may be one the might have slipped through the cracks. Really gives us an incite as to how bizarre PCa assessment can be and the value of mulitple opinions (multiple pathology and biopsies done).

On this one the value of multiple opinions seems to be very critical and wise for this patient, whom took the time to reflect on his treatment plan(s) he was considering based upon actual pathology findings, read his story. Have I ever mentioned Twilight Zone? It is bizarre at every twist.

www.yananow.net/Mentors/DavidM2.htm 

Good hunting and best of luck to Dave in whatever his future in this may reveal.

Zufus: Dx-2002  (urinary blockage-100%) Age 51 then, unreal psa(46) and pathology(12/12-all 80-95% vol.), gleasons 7,8,9's, scans appeared clear,...unreal I am still here 7 yrs. later and ok(considering) thus far, any regrets in choices...not so far, current  (psa .36). All blood markers, pyrilinks and other(onco-docs) tests all have been in normal ranges for years now, blood pressure usually  108-120 over  60-70 ranges (fortunately), testostostorone was even not long ago in normal ranges without huge spike in psa (off all drugs for 2yrs., up till Nov. 2008), of course cannot take anything for granted with PCa especially high risk folks. Hey, I may post more than some others (no doubt), I also might not be here to post one day, so thanks for being considerate or understanding. 

 

Posted 3/8/2009 11:37 AM (GMT -6)
Bob, read the entire account, an interesting but I feel a rare case, probably more like an exception. With all they did and re-did, his ultimate choice for himself is probably the right course, for now. The thing that sad to me, beside all the worry and hell they put the poor guy through, is that he probably does have at least low grade PC at this point, despite the "professionall" disagreements. I hope he will continue regular PSA tests and additional biopsies if warranted. Because if the PC is really in him, its not ever going to go away on its own, we both know that. I hope he does well, personally.

David in SC
Posted 3/8/2009 12:02 PM (GMT -6)
I agree with you Dave this would be the exception and I mentioned that too. Just shows how bizarre the whole process can be for some patients, and yes I agree he has to keep his eye on his tests in the future.
Posted 3/8/2009 12:08 PM (GMT -6)
I agree back to you, Bob. That is why PC is such a cruel enemy. There is nothing cut and dry about it, not like with some other cancers and diseases. Sounds like the guy in the story did all the right and prudent things, and he certainly had access to some real "experts" that most wouldn't get the chance, and yet his case is still a maze of confusion. In my own personal case, and I realize right now I am so much better off than many of our brethren, is that I feel like I am not cured, and don't have a reason to feel cured at this point. Yes, I am thankful for my current condition, but now, I feel that PC will be hanging over my head like a dark cloud for the rest of my days. Sure, I could get hit by a car today, or have a heart attack out of no where, so in the end, PC might not be my doom. But already, I have fear for my 6 months psa test in May, am I expecting it to be bad, no, of course not, but could it be, yes, it could. The no certainty part about anything is what drives me, and I am sure, the rest of us here crazy at times.

David in SC
Posted 3/8/2009 1:05 PM (GMT -6)

smurf  It's been awhile since posting, but we are still here, reading and always hoping the best for everyone. Hard to believe it's been 10 months since surgery, a year since diagnosis! Overcoming incontinence has taken longer than we imagined but success is almost there! ED remains an ongoing challenge , frustrating, depressing, hopeful, depending on the day! This post and one other we saw makes our own twilight zone experience stand up like the 800 # gorilla in the room. We both have medical backgrounds but  were so concerned over the dx. we did not  even think to seek a second biopsy opinion. 2 months between dx. and surgery seems to be the recommendation. We wish that any of the MD.s in the group had even suggested a second opinion, we suggest this to everyone now. This forum has been our rock, our teacher and so many times our means to getting perspective back. So, get 2,3,4, opinions before choosing a method of treatment...it can only help..all of us! :-)

Posted 3/8/2009 1:40 PM (GMT -6)
zufus, thanks for the post and the link.  As usual from your posts, it was both interesting and educational.  I think, given all of the same info, that I would have made the same decision, i.e. active surviellance. 

Tudpock

Posted 3/8/2009 2:36 PM (GMT -6)
Zufus,
Thanks for pointing out that interesting journey for Miller.

Perhaps this is one of those very rare cases of Prostatectomy By Biopsy, where the needle hit the only PCa and eradicated it (for now)!

However, I am sure everyone here would agree that the velocity of the PSA (doubling or more in one year) is enough to cause concern for more PCa hiding somewhere.

Makes me almost wish I had held out for a second Biopsy myself. And although my PSA was a lot higher, the velocity was not nearly as great percentage-wise and with a large prostate (and BPH) you would expect a high baseline PSA anyways.

But it sure is nice, when you have extensive BPH (as i had) to have the prostatectomy for Cancer and not just for the stupid BPH (which my Uro had suggested as a way to cure the BPH ). That would have been really cruel fate! It sure is nice to just *whoosh* out 8 or 10 oz of urine in about 10 seconds or less -- no more piddling streams for me! Small miracles amongst all the other thorny issues of PCa.
Posted 3/8/2009 10:42 PM (GMT -6)
Epstein, Myers, Lebowitz, Strum, Vogelzang, Lee, you name him. No doctor is infallible. And this cancer is a moving target. Sometimes you get a best guess, and that's the best you can get. it does not matter the technique, modality or doctor. There is always room for error.

But we do have probability. And for that reason we have a basis to rely on these guys. And doctors of lesser prominance. My point being that it is possible that the pathologist down the street was more accurate than the best and well known. Mike scott once said to me that getting a surgeon that did over a thousand procedures versus one that did 500 does not mean that the first doctor is better. It just means he has done a lot, possibly quickly. But the averages and the odds improve with experience and we sometimes have to base our decisions on that basis...

Tony
Posted 3/9/2009 7:13 AM (GMT -6)
Thanks Tony, we don't know all the possibilities of this case anyway, perhaps slides were mis-matched or actually done by one of his staffer people...lots of possibilities I do not wish to say anything against his work. Pointing out how bizarre it can be for patients whom know alot and do about everything the best they can to assess what is what.
Posted 3/9/2009 9:22 AM (GMT -6)

I had somewhat of the same type of experience as the Yananow story.  In fact almost identical with regard to age, PSA and biopsy results.  My biopsy indicated Gleason 6 in one of ten samples.  The first biopsy samples were sent to some lab my urologist uses.  I sought a second opinion and went to Vanderbilt University.  Protocol there called for the biopsy slides to be read by their pathologist.  His read was atypical cells but not carcinoma.  My Vandy urologist then sent the slides to Epstein who confirmed the firsy read as adenocarcinoma.  It was a tough roller coaster emotionally but I decided to have the Da Vinci.  Post op path report confirmed a single tumor for about 5% of my prostate.  My Vandy urologist told me that of the hundreds of PCa cases they have a year there will be 4 to 6 the Vandy pathologists does not agree with the first read.  In all those cases they send the slides to Epstein.  My Vandy urologist says over the years he has been doing this Epstein has always been right based upon the post op path report.  I believe if the PCa is small and not multi focal then two consecutive biopsies may not have the same results.  Those needles are small and only sample a very small part of the prostate tissue.  I asked my Vandy urologist if Epstein had come back agreeing with Vandy's pathologist what would he had recommended.  He said he would have suggested a PSA check every six months and if it continued to go up then a saturation biopsy of 40 to 50 samples. 

Tamu

Posted 3/9/2009 1:23 PM (GMT -6)

I don't think this story is as uncommon as some believe. I too would have had surgery for what was later described as an indolant cancer cluster, not a tumor. I think the main point is that patients who have initial diagonsis of low grade cancer get 2nd opinions, because in many cases the rush to surgery is not justified.

JohnT

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