My Gleason 3 + 3 Prostate Cancer Is Now Metastatic

Fresh said...
This is a sad tale but does not surprise me at all. Research conducted looking at over 100 genetic markers accross the Gleason 3 and 4 patterns concluded that PCa risk cannot be stratified by Gleason. Gleason is nothing more than an approximation (architectural) interpretation of PCa cell structures. The study identified 5 marker clusters based on dna copy rate/replication failures as a more precise means of determining aggression and progression. You will even find members clinging onto % of G3 and G4 and G5 differentiation in biopsies and pathology reports trying to stratify risk. We are I am afraid in the dark. Those that have long survival or often do well post post RALP are nothing more than the beneficiaries of less aggressive disease. G3 can be as lethal as G5 and we have many cases of G5 living for 15+ years . Bottom line. It’s a crap shoot. Sorry for the reality check.
Fresh

I agree with your comments above, ddyss. The Fresh comments above—while having a thin thread of reality embedded deeply—are largely false and worse, misleading, as conveyed.

As an illustrative example: "...PCa risk cannot be stratified by Gleason." Well, nobody uses Gleason alone. Rather, Gleason grading, PSA and clinical staging ARE used pretreatment to stratify men into risk categories. And already today in some cases, additional information, including MP-MRI findings and genomic profiling scores are resulting in more accurate risk stratification, leading to improved decision making at the pretreatment stage

Another: "Gleason is nothing more than an approximation (architectural) interpretation of PCa cell structures." Well, medical doctors who have specialized in pathology do indeed "read" the biopsy samples and match pattern architectures to give final Gleason grading, and there are indeed varying skills of pathologists (highlighting the importance of a pathology 2nd expert opinion), but in the end the readings themselves are "mostly" correct...so while it is not perfect, to say it is "merely an approximation" defies an understanding of the process.

Then, without stating this clearly, Fresh seems to have stumbled upon the bigger issue which is that clinical biopsies are merely samples of a very small percentage of the prostate, and that while there are steps (for example, MRI assisted biopsy) that can be taken to improve the odds for finding "good" samples, there is an element of statistical sampling involved.

Lastly, this is completely incorrect: "G3 can be as lethal as G5." I don't think this misstatement needs further embellishment beyond what I've already said in this post.

There was a bit of final redemption in this statement: "...we have many cases of G5 living for 15+ years." I would have said "some" instead of "many," but there are indeed cases of distinctly different virility strains in the instances of high-grade PC. But then again, nobody looks at Gleason grade only.

The post copied above is largely misleading info, and seems to be an instance of someone with a little bit of knowledge being potentially "dangerous" spreading misinformation.

Post Edited (Blackjack) : 10/28/2018 5:13:02 PM (GMT-6)

Thanks for so many helpful replies. I have not given much thought on treatment options. I have an appointment with a MO at Penn Medicine in 12 days time. At least 10 lymph nodes are involved. No uptake in the prostate and seminal vesicles. Removing lymph nodes or radiation are the options I would look into. But they may not be feasible in my case. There could be microscopic metastasis in bones.

We in every respect...have a direct line...unique to ourself...to the source of our self...this is exhibited...in all ways...always...there is darkness...which gets its power from light...not the opposite...the spoken of source (within ourself)creates...geometrically...all at once...we parse...hone...divide so as to understand that which has already happened...gibberish...myth...truth...pick your poison...then...live..." to be or not to be " is the question and the answer...spinning will only make you dizzy...

Fauntleroy said...
Sorry to hear that, something I think about every time my PSA is checked.
As for the gleason 3, that was only assumed from a biopsy result. May have always been higher and not contained. No rules with this disease

Yes, sorry you have had this outcome! I agree that a more aggressive PC may have simply been missed on biopsy.
I guess the surgery does have at least some advantages, and one of the main ones is: the surgical pathology report. But even that may not be a guarantee.

My Urologist told me of of a G6 patient he had done surgery on, who remained undetectable for several years. ( if memory serves, surgical pathology confirmed G6 ) Then he lost track of him for 5 years or so, until he showed back up with some symptoms. And wide spread mets. I guess none of us have any guarantees as far as this disease, or our lives in general. Obviously we don't.

Yes ddyss - I read that paper a while back. You are clearly a highly enlightened member of this site. I find it completely unacceptable that these studies have not yielded better tests already. Breast cancer for example stratify risk much better. It’s not just about biased funding for research. Billions of dollars are in play for research every year. Cancer research UK for example decided to spend milions building a vanity research centre in some of the most expensive parts of London called, The Francis Crick institute. Because as we all know - there is a direct correlation between cancer research effectiveness and high cost real estate. Their web site states that a risk factor for prostate cancer is height. Yes, taller men are more at risk than shorter ones, because they have more cells in their bodies than shorter men. It’s madness.

The only safe approach to dealing with PCa is to assume the worst and deal with it as aggressively as you can in the full knowledge that you are trading/exchanging bodily functions and risks for longevity. When I advise friends to go for maximum oncological control I really mean that.
Fresh

F8, Fresh,

So much depends on the clinical staging regarding (a) how much time is available and (b) how aggressively one needs to go after it. I don't think anyone these days would recommend a minimal G6 (one small core of 12, for example) to go for a maximum 'triple play' treatment.

And I'm one who got the post surgery upgrade, from 3 G6 cores all on one side to G7 in all 4 quadrants. The last two comments would seem to argue against AS in all cases, is that what your mean?

There is, I think a balance point to find, between the bad old days of "your PSA is elevated, therefore you have PC, and we need to treat aggressively tomorrow" and "PC is no biggie, it rarely needs to be treated at all". PC has both blessings and curses built in: It is rare, thankfully, for PC to be the immediate death sentence that pancreatic cancer is, or the immediate surgical treatment that is colon cancer. On the other hand it IS important to find it as early as possible (and PSA testing is the beginning point, NOT the diagnostic point)--I don't really buy the slippery slope argument: I don't know of any cancers that are diagnosed without some kind of biopsy procedure.

For the record, my diagnosing urologist--who found nothing on the DRE, and had 3 G6 cores--said I had "a few months" to make a decision--and that he would have supported AS. (I believe that a follow up MRI guided biopsy would have found my G7, so my AS journey would likely have been short-lived)

I was mostly challenging THIS statement by Fresh: "The only safe approach to dealing with PCa is to assume the worst and deal with it as aggressively as you can in the full knowledge that you are trading/exchanging bodily functions and risks for longevity. When I advise friends to go for maximum oncological control I really mean that."

Which WOULD suggest that every diagnosis, regardless of clinical staging, requires the most aggressive treatment available. This is dangerous talk, especially in this forum, which has argued forever in favor of (a) awareness, (b) that treatment match the diagnosis, and (c) that in low risk cases, AS should be automatically on the table until proven otherwise.

(Which is far beyond the OP point of this thread: we have someone who began with a low risk diagnosis, treated well within the standard of care for his diagnosis, and wound up with a recurrence after several years of good results)

If TA was still around, I'm sure he would post links to the research studies that show that in the vast majority of cases, G6 and G3+4 can take some months to decide on their treatment path with NO change in the ultimate outcome after treatment.

I'm with halbert - we need to really consider the messages we, as a group, want to put forth. To advise every patient to "hit it with the kitchen sink" would lead to vast over-treatment. If you take that thinking to its limit, a single G6 core would receive RP, then RT, then ADT. Wow!

Hi
Sorry to hear about youre situation.

I am interested cause you orignally were diagnosed with G6 and eventually had Mets. I have been diagnosed with G6 with AS recommendation. The big concern is whether you get METS with G6 which seems to be a hotly debated issue. Did have MRI done which did not identify anything but BPH. So looks like I have only G6(no 100% guarantee of course). So sticking with AS but the METS issue is on my mind.

Also you mentioned you are going to Penn. Did not like my original Uro at all. and switched to Penn. Figure a large cancer center is best. First Uro did not want to do MRI which to me was unacceptable(there were other problems). At Penn got MRI and they wanted to do bunch of other scans as well which seemed over kill. But have a comfortable feeling but jury is still out. At penn saw 2 Uro one said surgery(older) and the other(younger) said AS and was reluctant to even talk about surgery. I was referred to the second by the first and the first guy clearly admitted his bias(he is a surgeon although he does not do surgery anymore) .
So I need to reconcile and will do so at my follow up in Dec. So interested in youre experience at penn. Cause I need to figure out if I am comfortable with them. The experience with the first was disconcerting but did open my eyes to being my own advocate. Just go to figure it all out.

anyway best of luck with youre situation and would luv to hear about youre opinions and experience at Penn

halbert said...
I think the overall lesson with this OP, is twofold.

Threefold. It is particularly important to have biopsy slides sent to a PC pathology expert for reading...and there are several vectors with this, but let me illustrate one which we have seen reported here at HW/PC: Halbert, you talked about the surgical pathology "upgrades," which for low-risk guys are generally no big deal...especially when you realize that you could have still been on AS with a low-volume 3+4 case. But you didn't mention the "downgrades." What about those guys (and yes, I realize that this is not the OP's situation, but this is added for completeness) who's surgical pathology found NO cancer...not even 3+3. It happens; it's been reported here. I've forgotten the percentage off the top of my head—it's not as high as the "upgrades"—but would you "hate to be that guy?" So, while I agree with your first two "lessons" from this case, for similar cases to the OP (but different than what I described here) it is imperative to have a 2nd expert opinion on biopsy slides.

Of course, the big picture statistic to keep in mind is that about 2% of all initially diagnosed low-risk PC cases end up as an eventual "failure." And it doesn't matter whether the patient initially went onto AS or sought immediate aggressive treatment...it's still 2% either way. Let that sink in.

ddyss said...

Fresh said...
I know it’s a side issue for this thread but check this out https://www.ebiomedicine.com/article/S2352-3964(15)30071-2/fulltext
Fresh

You have a point - look at this study
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4695400/

Quoting from this study :

Prostate cancers also have varying degrees of DNA copy-number alteration; indolent and low-Gleason tumors have few alterations, whereas more aggressive primary and metastatic tumors have extensive burdens of copy-number alteration genome-wide.

We all can benefit from better testing but not sure much higher cost of such testing is justified at this time.

That's interesting, and very detailed. I've long considered that the medical community is throwing away valuable information with all of us confirmed cases. Perhaps they could do the same DNA mapping as that study for a large number of cases, maybe even make it a standard procedure for a while. Then, track those cases through treatment and follow up, to map the same kind of DNA changes vs. long term outcomes. After that, we may be able to identify certain genetics that track closely with treatment types and outcomes! There may be 15 or 20 types, or more, of classifications that could clearly identify those who can do AS, or need aggressive treatment. And even develop accurate projections of treatment effectiveness.

We have seen people here diagnosed metastatic, with wildly diverging outcomes. I know of at least two who unfortunately succumbed within 2 years or so after diagnosis. At the same time there are at least two others who are doing very well nearly a decade later with almost the same apparent starting point. Obviously, those cancers had some very different characteristics, but our present knowledge can't tell which is which. Surely the DNA of the initial tumors could have provided some information, but of course no one tried to map the DNA from those biopsies.

That might be a good place for a considerable amount of cancer research funding!

First of all I would like to say I can't believe some of the unsupported statements made in this thread. There is NO evidence that Gleason score is not a valid gauge of agressivness of PCA. You can claim what you want about all these "new" tests that see all these supposed genetic defects, but none of them have a 30+ year history of clinical data to back up the claims that any of these mutations correspond to prostate cancer mortality. Only the Gleason system/Grade Group system has decades of clinical stats. based on this scoring system. It is the most tried diagnostic system in existence today for PCA. None of these other tests have a history long enough to claim any signifigant clinical findings.

I don't care what they claim they see in DNA...show me the survival rates of people classed with any of these new tests for an extended amount of time. There are none. Only the Gleason system has a history to back up the predictions of survival based on the grade.

The statements "FRESH" made (phrase removed by moderator for Rule #3 violation) I have been reading about PCA for over 10 years since I was diagnosed and there are hundreds of studies to back up the Gleason system based on survival.

Organ confined Gleason 6 post RPP is never metastatic and is 99.9% of the time cured using today's revised Gleason system as a measure.

"Brachy" you did not have RPP....you had seeds.....they only way to know what PCA you actually had to have RP. Biopsies are upgraded about 30% of the time.

I am amazed at the baseless statements made in this thread.

Chris, sorry...I had to do some minor edits. You were a little too strong in your criticism of another member... Jim

Post Edited By Moderator (Tudpock18) : 12/13/2018 5:01:20 AM (GMT-7)

ChrisR said...
... you did not have RPP....you had seeds.....they only way to know what PCA you actually had to have RP.

I am going to risk jumping in here and agree with Chris on this point, for the benefit of any new members.

The FIRST thing that anyone who joins this forum and mentions surgery hears from the majority of respondents is something like "you should not have surgery, you should have xxx radiation", generally followed by a list of all the potential side effects of surgery. And the "backup plan" is always refuted by someone who has never needed a backup plan, or who had yet another form of radiation as salvage and still ended up with retractile PCa years later.

I will reassert Chris's statement that the ONLY way to know exactly the extent of PCa you have is for your prostate to be dissected in a pathology lab. Scans can only go so far. They can detect some tumors and totally miss others. Granted, a surgeon can overlook another tumor located outside the prostate. But I think a lot of people are just afraid of surgery itself.

For the benefit of those who have chosen surgery over radiation, it has its advantages. You have considered your options, and those options are YOURS and yours alone. Those who try to talk a member out of surgery are doing a tremendous disservice to someone who is already in a stressful situation.

Everyone you meet is fighting a battle you cannot see... be gentle, be kind"