I can only give you my experience....what happened in fact...tell you what I learned...and how my experience effects my advice to others.


For me....if I had that path....I would not be able to decipher it either. I have no clue how to interpret it.

I called my local pathologist's office for answers to a couple of questions I had on the report he issued on my cancer. He never returned my call. (my assumption on that is....in his mind...dealing with the public is not his job...rightly or wrongly, and it could be wrongly....that's how I interpreted no call back).

I wanted more information on my path. So I got a second opinion from JH.

I'm glad I did. The customer service is in the path lab is second to none....in *my* experience. I've called up there with questions...they've patched me right through to the department, and rather than a receptionist or "regular worker" answering the phone....a real pathologist answered the phone. I remember asking him one question....and he said .... "Wait a minute...the guy who did yours is across the room....let me ask him". And he yelled across the room to the guy who did my path report and asked the question right there on the phone. I could hear him in the back ground. One call. 5 mins. And every question I had was answered right from the horses mouth. This has been my experience with every JH phone call I have ever placed there on the several different issues I have had to be there for. For this reason....it's why it's so obvious that I'm sold on that institution. It's like having my own team...with one call. Not unlike the internet...only the people who's on the line....know what they're talking about. JH's competence can be questioned.....but, in my experience....they're efficiency cannot be

For me....and they'll be people along to that will give you a 100% different take...given their experience...I would want to know if there were any 4's at those margins.

BUT...that's *me*. we all have different comfort levels....and different ways of getting to it. Some people don't give a rat's azz about what a path says. Some take the docs word. Some hit the internet and feel satisfied. Some, like myself....needs a bit more.

Good luck Prato....

Pratoman,

Sorry I won't be able to answer your margin or "notes" questions. But I am passing along two links below that are the pathologists' 2009 and 2012/2017 "Protocol for the examination of specimens from patients with carcinoma of the prostate gland". For the 2009 one, you can click on the "allen*press free full text" in upper right corner of the linked-to doc, and you will get the full protocol doc. For the link to the more current protocols, follow the link, then skip down or "find" to the Genitourinary section.

Both have good explanations of the "notes" that the path reports refer to. Also some kinda helpful drawings of prostate and margin explanations.

When I had my first post-RALP meeting with uro, nurse pulled the cath (yeah!!), then uro gave me the same "summarized" deal you got. I asked him for the full path report, and he went and printed it off right then and there. Thanks to this board for making me aware that I needed to get the full report--I was prepared!! My path report followed the pattern of these protocol docs very closely, except the "notes explanations" were not in my report. I had to research when I got home and found these two protocol docs over time.

In 2013 (year after my RALP), I got a second path from Epstein at JH. His report was a little more summarized, but it did confirm my 3 + 4 = 7 overall. He also stated that my one margin was 3 + 3 = 6. My original path in 2012 did not have that. It was important to me to know before embarking on TRT. I was willing to try TRT based on the "saturation theory" but wanted to be fully informed in case things went south. Which they kinda have...

Copy you on the "prostate jostling" deal. Just read a Smithsonian article saying there are 37 trillion cells in the human body. I find it hard to believe that a RALP patient, even with undetectable uPSA, has zero prostate cells left in the body. There probably are some, but even if cancerous, never get to the point of causing trouble or even becoming "detectable".

Hope this helps a bit.

Robert

/www.ncbi.nlm.nih.gov/pubmed/19792046

www.cap.org/web/oracle/webcenter/portalapp/pagehierarchy/cancer_protocol_templates.jspx?_adf.ctrl-state=i54r5i0q9_4&_afrLoop=343951510677539#!

Pratoman,

I would call the Pathology Office, let the secretary know that you have a question about the pathology report that you want clarified. Sometimes they will connect you to a pathologist directly or, if unavailable, they later ask the pathologist to review and clarify the report for you.

Andrew--I love your description of a pathologist, which fits them to a T.

Pratoman, your post is like as if you were reading my mind to the point where tuesday i had my husbands slides sent to Epstein for a second opinion. The very same as you, the report has left us with more questions than answers and when we put those questions to the surgeon we get a brush off answer. Emailed him to clarify what was the grade at the margin as it does state on one portion that the margin was positive (final call neg) and he told us that the grade at the margin was irrelevant! Since our insurance covers a second opinion from Epstein were taking advantage of the expertise! I really hope you get more assistance with your. Its a horrible feeling to have questions that dont/wont be answered by our uros.

<<<I called my local pathologist's office for answers to a couple of questions I had on the report he issued on my cancer. He never returned my call. (my assumption on that is....in his mind...dealing with the public is not his job...rightly or wrongly, and it could be wrongly....that's how I interpreted no call back)>>>

It's not wrongly! I've had the same experience with pathologists at Univ of Miami twice. I received a confirming JH opinion after my biopsy, and just for peace of mind, plan to request a second opinion on my surgery pathology report. Epstein & Company are second to none.

And Prato, you had a so-called superstar surgeon. Kinda disappointing.

Bluebird, I think there is no question that does matter when it's asked by a patient with cancer, to their doctor, I'm with you on that.

Realized today that my next follow up is a week from tomorrow, so I'm gonna be visiting the vampire tomorrow for a blood draw. I thought the appointment was in two weeks. Now my stomach is in a knot.
I guess I'll wait for the results before I start harassing the pathologists.

Post Edited (Pratoman) : 8/25/2017 6:22:43 PM (GMT-6)

garyi said...
Epstein & Company are second to none.

My local pathology report reads "No EPE"

John's Hopkins stated it more specifically...."EPE cannot be determined at surgical margins"


Now...who would of thought of that? Of course it can't be determined at the surgical margin....that part of the specimen is still in LOL my body!

That's class. No stone left unturned....





Good luck Prato...

I don't think the surgical notes would hve that info. It's a function of the pathologist.
I'm going to talk to the surgeon though when I see him next week.

I should probably just let sleeping dogs lie, because I know none of this will affect the outcome. But I am what I yam, as Popeye used to say.

IT, I already got a second opinion confirmation of the 3+4 on the surgical pathology from MSKCC, otherwise I would send it to JH

I think you have EVERY right to see surgical notes. It's your (husbands) surgery. Who has more of a right to see it?

Am I understanding you correctly—are you going to wait until you see your doctor in a week to get your PSA result? The lab probably has that already or certainly by Monday. Why wait?

I have found that there is not a set standard for the issuance of a post surgical pathology report. I have seen a few posted on line that were very detailed and relatively self explanatory and others that were extremely vague. Mine had a lot of words in it that I did not understand and that my urologist could not find the time to explain to me. I think maybe it had something to do with liability. So I searched on line for every word and phrase that I did not understand and finally gave up my search.

My laymans opinion on your margins is that the initial pathology found cancer at the margins but your surgeon may have to more tissue out at the margins and that was found to have no cancer. As for the fibrous tissue, it is something that the pathologist must make a remark. My pathology indicated that my prostate was just solid yellow stained sheets of tissue. When I asked my urologist he just shrugged his shoulders. Probably cancer that had already died de to prior ADT.

Prato,

I'm gonna tell you the same thing I tell my husband on the day of his blood draws...Give'em some good blood today!!

Thinking of you on this Saturday, Prato!