TAKE CHARGE of your prostate cancer and future - ASK QUESTIONS

Intraductal Carcinoma not mentioned in my pathology report, was 15 samples taken and 2 had what they said large Cribriform Glands. Five were 4+3 and 8 were 3+4, 3 were benign. PSMA Pet said all was confined to prostate.
MRI did say Prostatic capsule: Intact, Neurovascular bundles: Not involved, Seminal vesicles: Not involved, Lymph nodes: No lymphadenopathy, Bones: No acute osseous abnormality. The prostate gland measures 5.7 x 5.0 x 4.9 cm with volume of 68.75 cc. PSA density is 0.06 NG/mL/CC. 2. Lesion # 1: PI-, . No pelvic lymphadenopathy and what caused them to take biopsy-and RADS 5 lesion in the left posterior peripheral zone extending from the base to the apex measures 5.83 cc. No frank extracapsular
But nowhere mention Intraductal?? I guess that is good?
I may ask them to take a second look, but they seem to be getting tired of my questions. Then they sent them off for a decipher test (which came back .85), maybe they don't have them anymore?

How timely that you bring this up! My wife had her hip replaced about five months ago. They have just started to biopsy the head of the femur after it is removed, since technically it is a diseased body part.
So the pathologist at HSS determined that there was amyloid present in her specimen; they stain the slide, and if it shows up red, then amyloid is suspected.
So, amyloidosis is a pretty serious disease and it needs to be pursued. So we went to this big fancy hematologist and he took all kinds of blood and sent her slides to the Mayo Clinic for re-examination by their pathologist.
As it turns out, his reading of the slides suggests no amyloidosis whatsoever! And here we were terrified that she had an auto immune disease with serious consequences to follow….Go figure…
Phil

You are (unfortunately) correct, your comment also goes for mpMRI interpretations.

My prebiopsy mpMRI indicated three PIRADS lesions (3, 4 & 5) were found, which led to a targeted biopsy indicating 7/15 positive cores and low volume 3+4 in two cores.

Two and half years later, after a third follow-up mpMRI, all three original PIRADS lesions were "no longer visible".

As much as I would like to believe that my implementation of the ERASE randomized clinic trial was the reason for this finding, my urologist's reaction was "MRI's are notoriously inaccurate".

It turns out that studies indicate that radiologist's interpretation of the SAME mpMRI can vary from 35% to 67%.

Bottom Line: Don't just assume your initial diagnosis is correct!

When I transferred my care to an NCI designated cancer center in Seattle, the first thing they ordered was a review of the biopsy pathology.

All the staging tests and procedures are subject to interpretation, and all the recommendations for treatment are based on statistical analysis run on old data. This makes all the recommendations for treatment more or less educated guesses. And, to top things off, all the treatments can be toxic.

Nevertheless, I am grateful that so many brilliant people have put in so many years trying to improve the situation. Compared to even just a few years ago, things are improved.

I appreciate the health care workers I've met so far. All of them that I have experience with have been doing the best they can. I say this even about the two that I really don't want to see again.

To reinforce your statements about getting results reviewed.

When I had my PSMA PET scan The radiologist put a comment in about positive area near the prostate after it had been removed. My oncologist, and I both thought that that meant that there was a metastasis problem in that area.

I spoke to a urologist whose husband was a radiologist and she was real familiar with looking at PET scans. I was seeing her for another reason. She pulled up my scan and said she didn’t think that the information from the radiologist was correct.

That got back to my oncologist, who got back to the radiologist. His comment was, “I was using voice recognition to make that finding and it incorrectly wrote what I actually meant”. There is no problem in that area.

I had been really worried about that, and it was nothing. Another second opinion squashing The incorrect information.

@diverjer
That actually is really good. There is no known treatment to handle both intraductal and cribriform At the same time. I was really frustrated trying to find some documentation discussing treating both and there was nothing. Apparently, they have not found a successful treatment when both problems are found at the same time.

@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.

@jeffmarc Hey Jeff..."WOW"...Your quote of the radiologist saying: "“I was using voice recognition to make that finding and it incorrectly wrote what I actually meant. There is no problem in that area." That is so scary. That tells you...all of us...that physicians using this voice recognition dictation technology, are not even "reviewing" the printed document for accuracy of what they said. They presume the technology is advanced enough to accurately place into printed form, that which they speak. With all due respect to physicians who speak English as their second language and often with a moderate to heavy accent, I don't even know how automated voice recognition works. Perhaps when they first start using it, there is a start up protocol where they must speak a prepared document into the system, so that the system can account for - recognize - any subtle to profound differences in the pronunciation of the English language by the user. That then forms the baseline for how the software will interpret everything they speak in the future...maybe??? I don't know...I have never used it.
These physicians must not be on Instagram and other social media sites that use voice recognition, because we have all seen written text scrolling at the bottom of an Instagram post where we "hear" what is being said (and in perfect English), but the printed words that are scrolling are completely wrong. Utterly scary. These physicians need to slow down and review/edit what they dictated. That is simple "quality control." As a former Director of Clinical and Anatomic Laboratory, it would be like testing patient blood samples without calibrating the instruments and running high, normal, and low quality control material to verify the accuracy of testing, and then just reporting to the doctor whatever the instrument measured. It could all be wrong! In the good old days, their medical transcriber who actually typed from their audio tape, would have enough knowledge to question what was spoken..."ask the physician for whom they were transcribing"...what they actually meant to say. This auto-dictation and artificial intelligence using voice recognition is clearly not developed well enough to be used in such critical applications, such as dictating critical pathology of cancer patients' biopsies and post-surgical tissue/slide examinations. SO, SO SCARY.

@rlpostrp
I use voice recognition for everything I type in this forum. I have nerve damage to my right hand and cannot touch type with it, My left hand works fine, however you need both hands to really type properly.

I have to fix errors on almost every other line due to voice recognition issues. You find grammatical errors, words spelled wrong (I constantly have to correct Gleason spelled Gleeson) and the wrong word used when I don’t read over exactly what I wrote. You see capitals in the middle of sentences I write because if I pause for a moment, it starts off with a capital. It also throws in commas when they are totally unnecessary. You will notice sometimes when I write a very short message it will have errors because I didn’t review it.

It makes it easier for me to respond to messages, but is a real pain to have to constantly correct it. I have no accent since I grew up in California and have a California accent.

I can just imagine how much correction doctors have to do.

@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.