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.

Profile picture for diverjer @diverjer

@jeffmarc

Well more stupid questions, I really don't know what intraductal is? I am assuming it's all the duct work that go from testicle around bladder as well as seminal vesicles that eventually connect to prostate?
Not sure how to ask for review of biopsy as KUMC pretty much just don't respond to my questions anymore. I just hope they did good the first time. It seems the MRI, biopsy and PSMA all point to the same thing.
Edited= I have asked if there is a way to get second opinion on biopsy. The guy I sent request to does sometimes answer, he is a PA-C. He actually did the biopsy. I doubt it makes any difference as I said MRI, PSMA and decipher all say about same.

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@diverjer

No question is ever stupid IMHO. Only stupid people think that they know everything and do not ask questions ; ).

Prostate gland has myriad tiny ducts inside the gland that collect excretions before it is moved out of the gland and into much bigger ducts. When cancer cells invade those tiny ducts it is called IDC.

And one more thing - cribriform and IDC are completely different things and they do not always come together , actually have nothing to do with each other.

Regarding cribriform - those are also formations, they are not cells per se. Cancerous cells change the morphology and look part "empty" and make small circles that are "sieve like" - those are so called "cribrifom glands" or "sieve like glands" . Those circles can be measured under the microscope and the bigger the "circle" the worse it is since more mutations happen which in return cause that unusually big formation.

So - bottom line, one can have small cribriform, (not a big deal), big cribriform (big deal) and IDC alone or in combo with cribriform (big deal).

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Profile picture for rlpostrp @rlpostrp

@diverjer Well...rather than write yet another thesis, and to get a short, specific answer, I "asked Siri", who said succinctly:
"Intraductal carcinoma (IDC) of the prostate is a type of prostate cancer where the cancer cells grow within the ducts or "acini" of the prostate gland. This type of cancer is usually associated with a high-grade Gleason Score, large tumor volume, and advanced stage." The ducts themselves are responsible for transporting/moving prostatic secretions to the urethra. The ducts connect the glandular acini to the urethra allowing for the release of seminal fluid during ejaculation. The acini themselves produce the prostatic fluid which is the liquid component of semen. The fluid contains enzymes and citric acid. The acini themselves are lined with epithelial cells that secret the fluid into the ducts. IDC happens because of genetic mutations to the key regulatory genes that control that epithelial cell growth. Of note: A person can be initially diagnosed as low as a Gleason 3+3=6 on biopsy, but upon surgical dissection and microscopic examination of the entire tumorous areas of the prostate, will be reclassified to a Gleason 8 or 9 if IDC is detected. Yet another example of how, as I have coined:" The Gleason Score is just the tip of a large and looming iceberg, most of which is not seen or known until it is all examined on post-RP examination of the entire prostate.
Makes me wonder how many men with a Gleason 3+3=6 or 3+4=7 are, with misguided, overly-confident assumption, put on Active Surveillance, only to discover further down that two-year journey, that they have suddenly doubled, tripled, or quadrupled their PSA and have become a Gleason 8 or 9 after a second biopsy, and now have fewer viable options for successful treatment and longevity.

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@rlpostrp
The statistics seem to show that 50% of the people that are on active surveillance will need treatment within 10 years.. My brother got six years out of it. Nice to be able to go a period of time without having treatment.

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Profile picture for surftohealth88 @surftohealth88

@diverjer

No question is ever stupid IMHO. Only stupid people think that they know everything and do not ask questions ; ).

Prostate gland has myriad tiny ducts inside the gland that collect excretions before it is moved out of the gland and into much bigger ducts. When cancer cells invade those tiny ducts it is called IDC.

And one more thing - cribriform and IDC are completely different things and they do not always come together , actually have nothing to do with each other.

Regarding cribriform - those are also formations, they are not cells per se. Cancerous cells change the morphology and look part "empty" and make small circles that are "sieve like" - those are so called "cribrifom glands" or "sieve like glands" . Those circles can be measured under the microscope and the bigger the "circle" the worse it is since more mutations happen which in return cause that unusually big formation.

So - bottom line, one can have small cribriform, (not a big deal), big cribriform (big deal) and IDC alone or in combo with cribriform (big deal).

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@surftohealth88 "Yep"...exactly. I read the same. Cribriform and IDC are two different things, and can occur singularly/separately, but they do often present together per the literature, which is very ominous for the diagnosis. Thanks for the reply.

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Profile picture for Jeff Marchi @jeffmarc

@rlpostrp
The statistics seem to show that 50% of the people that are on active surveillance will need treatment within 10 years.. My brother got six years out of it. Nice to be able to go a period of time without having treatment.

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@jeffmarc Did your source say what happens to the other 50% in that ten years? Did "none" of them need any treatment, and they died of other things during that ten years? I am sure that wrapped up in that 50% is a certain percentage of men who succumbed to prostate cancer vs those who got lucky and needed nothing before they died of something else. Man...that is a big "roll of the dice". Like you said about your brother, he got 6 years out of AS. I am sure that others get only 2-3 years, while others get 12-15 years. Such a strange disease.

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Profile picture for Jeff Marchi @jeffmarc

@rlpostrp
The statistics seem to show that 50% of the people that are on active surveillance will need treatment within 10 years.. My brother got six years out of it. Nice to be able to go a period of time without having treatment.

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@jeffmarc

A study at Memorial Sloan Kettering Cancer Center, of 2664 men who were diagnosed with GG1, indicated that 76% were still on AS after 5 years, 64% after 10 years and 58% after 15 years.

The amazing thing is that only two men were deemed to have a disease that could have been cured on immediate treatment. The risk of distant metastasis was 0.6% at 10 years.

Some GG1 men will think they want treatment because they’re concerned with the possibility of being one of the 2 out of 2664 who developed metastasis after 10 years.

I wonder if this study had been properly explained to those diagnosed with GG1, who chose immediate treatment, ended up putting themselves at unnecessary risk for negative treatment side effects by submitting to immediate treatment.

This is the contention of Dr. Matt Cooperberg of UCSF.

The other interesting thing is that 25% of those that go off AS have no “trigger” reason….probably just anxiety…
https://pmc.ncbi.nlm.nih.gov/articles/PMC7480884/

REPLY
Profile picture for rlpostrp @rlpostrp

@diverjer Well...rather than write yet another thesis, and to get a short, specific answer, I "asked Siri", who said succinctly:
"Intraductal carcinoma (IDC) of the prostate is a type of prostate cancer where the cancer cells grow within the ducts or "acini" of the prostate gland. This type of cancer is usually associated with a high-grade Gleason Score, large tumor volume, and advanced stage." The ducts themselves are responsible for transporting/moving prostatic secretions to the urethra. The ducts connect the glandular acini to the urethra allowing for the release of seminal fluid during ejaculation. The acini themselves produce the prostatic fluid which is the liquid component of semen. The fluid contains enzymes and citric acid. The acini themselves are lined with epithelial cells that secret the fluid into the ducts. IDC happens because of genetic mutations to the key regulatory genes that control that epithelial cell growth. Of note: A person can be initially diagnosed as low as a Gleason 3+3=6 on biopsy, but upon surgical dissection and microscopic examination of the entire tumorous areas of the prostate, will be reclassified to a Gleason 8 or 9 if IDC is detected. Yet another example of how, as I have coined:" The Gleason Score is just the tip of a large and looming iceberg, most of which is not seen or known until it is all examined on post-RP examination of the entire prostate.
Makes me wonder how many men with a Gleason 3+3=6 or 3+4=7 are, with misguided, overly-confident assumption, put on Active Surveillance, only to discover further down that two-year journey, that they have suddenly doubled, tripled, or quadrupled their PSA and have become a Gleason 8 or 9 after a second biopsy, and now have fewer viable options for successful treatment and longevity.

Jump to this post

@rlpostrp
Thanks, so it's not duct work that go from testicle around bladder as well as seminal vesicles that eventually connect to prostate. But some ducts that are actually in the prostate. So when the PR is done the intraductal are removed.
I will have to ask what is done with all the ducts from testicle around bladder as well as seminal vesicles that eventually connect to prostate and ejaculatory ducts that enter the prostate. Maybe they just leave them and the sperm just gets absorbed by body?

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Profile picture for diverjer @diverjer

@rlpostrp
Thanks, so it's not duct work that go from testicle around bladder as well as seminal vesicles that eventually connect to prostate. But some ducts that are actually in the prostate. So when the PR is done the intraductal are removed.
I will have to ask what is done with all the ducts from testicle around bladder as well as seminal vesicles that eventually connect to prostate and ejaculatory ducts that enter the prostate. Maybe they just leave them and the sperm just gets absorbed by body?

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@diverjer If you have a radical prostatectomy, not only is the prostate removed, but both seminal vesicles and both vas deferens are removed. It is all gone. Your testicles still produce sperms, but...without seminal vesicles there is no fluid with which to ejaculate, so your body just reabsorbs the sperm.

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Profile picture for handera @handera

@jeffmarc

A study at Memorial Sloan Kettering Cancer Center, of 2664 men who were diagnosed with GG1, indicated that 76% were still on AS after 5 years, 64% after 10 years and 58% after 15 years.

The amazing thing is that only two men were deemed to have a disease that could have been cured on immediate treatment. The risk of distant metastasis was 0.6% at 10 years.

Some GG1 men will think they want treatment because they’re concerned with the possibility of being one of the 2 out of 2664 who developed metastasis after 10 years.

I wonder if this study had been properly explained to those diagnosed with GG1, who chose immediate treatment, ended up putting themselves at unnecessary risk for negative treatment side effects by submitting to immediate treatment.

This is the contention of Dr. Matt Cooperberg of UCSF.

The other interesting thing is that 25% of those that go off AS have no “trigger” reason….probably just anxiety…
https://pmc.ncbi.nlm.nih.gov/articles/PMC7480884/

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@handera
The 50% figure that I mentioned came from talks or videos I’ve seen, that covered active surveillance.

It might be in that Dr. Klotz or Epstein videos as well. I would not doubt the MSK numbers, but it may not be what’s been found everywhere.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance.


Here is a video by Dr. Epstein discussing active surveillance and more

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Profile picture for rlpostrp @rlpostrp

@jeffmarc Did your source say what happens to the other 50% in that ten years? Did "none" of them need any treatment, and they died of other things during that ten years? I am sure that wrapped up in that 50% is a certain percentage of men who succumbed to prostate cancer vs those who got lucky and needed nothing before they died of something else. Man...that is a big "roll of the dice". Like you said about your brother, he got 6 years out of AS. I am sure that others get only 2-3 years, while others get 12-15 years. Such a strange disease.

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@rlpostrp
It was just a discussion on active surveillance and long-term results. They didn’t dwell on what happened to the 50% of people after. Many people get PC in their 70’s and go on active surveillance, other things happen in life.

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Profile picture for handera @handera

@jeffmarc

A study at Memorial Sloan Kettering Cancer Center, of 2664 men who were diagnosed with GG1, indicated that 76% were still on AS after 5 years, 64% after 10 years and 58% after 15 years.

The amazing thing is that only two men were deemed to have a disease that could have been cured on immediate treatment. The risk of distant metastasis was 0.6% at 10 years.

Some GG1 men will think they want treatment because they’re concerned with the possibility of being one of the 2 out of 2664 who developed metastasis after 10 years.

I wonder if this study had been properly explained to those diagnosed with GG1, who chose immediate treatment, ended up putting themselves at unnecessary risk for negative treatment side effects by submitting to immediate treatment.

This is the contention of Dr. Matt Cooperberg of UCSF.

The other interesting thing is that 25% of those that go off AS have no “trigger” reason….probably just anxiety…
https://pmc.ncbi.nlm.nih.gov/articles/PMC7480884/

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@handera Excellent article. The authors do, however, emphasize that this cohort was considered ‘very low risk’ to begin with.
Originally they started with over 2900 men and so approximately 300 were already too far gone to be included in the study.
I think earlier, more aggressive screening is the key to all this and that has to start with education from a young age.
Women are encouraged to seek breast exams and have mammographies done at a younger age if there is a family history; men need to get that same advice - and LISTEN TO IT!
Phil

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