TAKE CHARGE of your prostate cancer and future - ASK QUESTIONS

Posted by rlpostrp @rlpostrp, Mar 30 10:23pm

Here is one for the record books: an "I can't believe this really happened" moment.
I noted that there wasn't much information on Cribriform Glands in Dr. Patrick Watson's book "Guide to Surviving Prostate Cancer." I had read that it is often paired with Intraductal Carcinoma that accompanies more ominous cases of prostate cancer. I wanted to know how the cellular pattern of Cribriform happens and why it is so ominous? I did a massive search online, and found out that MANY MEN "without" prostate cancer HAVE CRIBRIFORM GLAND TISSUE as a NORMAL OCCURENCE in their prostate. "WHAT"??? So...it is possible to have Cribriform Gland tissue that is "normal and non-problematic", despite having prostate cancer. I read more, and discovered that there are six or more cellular subtypes of Cribriform Gland tissue, some quite non-problematic, and others varying in their pathology. I read more on the frequent association of Cribriform Gland tissue with Intraductal Carcinoma with your prostate cancer. This became very interesting because...

My post-surgical pathology report was almost like a "form" that the pathologist inserted his comments on each line item. Under "Cribriform", my pathology report merely said: "Present", without any description of "what type" of Cribriform I had. Immediately below that was "Intraductal Carcinoma" - "Negative." So...

I called my urologist and had a 20 minute discussion expressing my concern over this, AND I asked my urologist to contact the pathologist to have my slides pulled and re-examined so I could have a definitive classification of the "type" of Cribriform tissue that I have, and double check whether Intraductal Carcinoma was not present with my Cribriform tissue. ..I wanted to make sure of that. So..."Buckle-in" for what follows:

I just received a voicemail from my urologist stating the following:
"Upon secondary review of your prostate tissue slides, the pathologist decided to amend his report and will provide an addendum to his report stating that THERE WAS ACTUALLY NO CRIBRIFORM GLAND TISSUE IN YOUR PROSTATE CANCER. His secondary review of the slides made him realize that what he thought was Cribriform tissue, was in fact NOT Cribriform tissue." And..."The Pathologist reaffirmed no Intraductal Carcinoma, and also reaffirmed your original Gleason Score of 3+4=7 with only 6-10% type- "4" cells."
ARE YOU KIDDING ME!!! CAN YOU BELIEVE THAT?

My message to every single one of you gentlemen, is that if you have vague, incomplete understanding of something that you just aren't so sure about in your surgical pathology report, ASK QUESTIONS...GET ANSWERS...HAVE YOUR CASE RE-REVIEWED, OR REVIEWED BY A SECOND PATHOLOGIST. It could change everything about your understanding of what is, and is not, going on with your cancer, and your entire cancer journey.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

handera | @handera | Apr 1 2:33pm

In reply to @heavyphil "@handera Excellent article. The authors do, however, emphasize that this cohort was considered ‘very low risk’..." + (show)

@heavyphil

….well, my diagnosis would have put me into your “already too far gone” group.

Needless to say….after 2.5 years on AS and a GG2 diagnosis….all the original PIRADS lesions (3,4 & 5) are “no longer visible”….two of which were found to supposedly contain low volume 3+3….so go figure….

If I have learned anything, after 2.5 years of studying PCa, it is to maintain a healthy skepticism towards one’s initial diagnosis, especially if it’s GG1 or GG2.

There is no reason to rush any treatment decision, if your initial biopsy diagnosis is GG1 or GG2. Get confirmation before moving forward with treatment.

heavyphil | @heavyphil | Apr 1 3:15pm

In reply to @handera "@heavyphil ….well, my diagnosis would have put me into your “already too far gone” group. Needless..." + (show)

@handera Yes, it would have indeed…but maybe those PIRAD numbers might have been less dire with another pair of eyes? MRI’s can be really unreliable, it seems.
My surgeon told me that there was something ‘suspicious’ on mine, warranting a biopsy…
Jeez Louise, it was a freakin solid block of G4+3 with cores of 70-90%! They never told me (Or I never looked) what my PIRAD score was…but it must have been really up there…
Phil

handera | @handera | Apr 1 6:07pm

In reply to @heavyphil "@handera Yes, it would have indeed…but maybe those PIRAD numbers might have been less dire with..." + (show)

@heavyphil

….your biopsy pathology report sounds like full on GG3…

PIRADS only predicts the likelihood of clinically significant cancer, so it becomes pretty much irrelevant in biopsy confirmed GG3+ cases.

Although a 2nd opinion is always a good idea for any diagnosis (at least to confirm the pathology), I don’t know anyone (worth listening to) who would recommend AS for a confirmed GG3 diagnosis...unless maybe those 80+ who have other major health issues.

GG2 is the “continental divide” of PCa…and one cannot have enough biomarker info for these cases, when deciding between treatment or continuing AS.

The good news for GG2 folks is they have plenty of time (years) to review future generated personal test data…if so inclined.

The bigger question (outside the treatment vs AS one) that every man with PCa faces is just how many (or how few) lifestyle changes they are willing to implement because of their diagnosis.

….and that’s driven by what they learn, believe and decide to do with controllable lifestyle variables in their life.

At the end of the day, after the “immediate treatment vs AS decision”….we all end up in the same boat regarding that bigger question:

“How will we then live?”