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Posted 9/12/2024 2:36 PM (GMT -5)
A friend of mine, has been on Active Surveillance for 11 years. I never even knew. He was G6. I just found out that he had a biopsy, I believe it was a routine biopsy, part of the AS protocol, his PSA was up a bit, but it was not crazy, it was 6.something.
He is now a Gleason 8

So he starts 2 years of Lupron on Friday, and will have 8 weeks of External Beam Radiation.
I suggested he ask about ORGOVYX before taking the shot.

Just thought I would mention this, g6 to g8 is quite a change. He did have a PSAM Pet Scan which showed nothing outside the prostate.
Posted 9/12/2024 3:14 PM (GMT -5)
Although I don't see it mentioned often, I would advise any G6 guy seriously considering AS to have a Decipher test. The seminal Decipher distribution study revealed that about 10% of RP-confirmed G6 (3+3) men had high-risk Decipher scores. See Table 2 in:

Decipher correlation patterns post prostatectomy: initial experience from 2 342 prospective patients (2016, Full Text)

And we know that many men who are G6 on biopsy are then upgraded after RP, so the 10% of men at risk is effectively much higher: some men believe they are G6 only because their biopsy unfortunately didn't hit existing higher-grade lesions.

The 10% have only G6 lesions; however, the nature of their disease is such that they have a propensity to form higher-grade lesions, which--unlike G6--can metastasize. We should keep in mind that PCa is a heterogenous disease: it's not at all unusual to have lesions with different Gleason scores. Only the repeat biopsies of an AS program can give you some confidence that you are (at least for now) a "true" G6 (3+3). And some of the true G6 men may encounter disease progression at some point; hence the value of a Decipher test. Personally, even if I were newly diagnosed and otherwise a good G6 candidate for AS, a high-risk Decipher score would be enough to persuade me to seek treatment instead.
Posted 9/13/2024 10:11 AM (GMT -5)
Good advice Djin. Wonder if I should mention that to him now, although at this point it wouldn't affect treatment protocol, he's already on the road.
On the other hand, if his decipher score came back low risk, would it be a reason to talk to the MO about reducing the 2 year duration of ADT?
Posted 9/13/2024 10:39 AM (GMT -5)
Nothing wrong with that IMRT+ADT therapy for your friend.
Based on my own experience and reading, I would have chosen a combination therapy (SBRT + IMRT or brachy + IMRT) + ADT, assuming reasonably convenient access to a high-quality treatment center.

Post Edited (Sr Sailor) : 9/13/2024 11:49:18 AM (GMT-4)

Posted 9/13/2024 11:14 AM (GMT -5)

Pratoman said...
Good advice Djin. Wonder if I should mention that to him now, although at this point it wouldn't affect treatment protocol, he's already on the road.
On the other hand, if his decipher score came back low risk, would it be a reason to talk to the MO about reducing the 2 year duration of ADT?

I was commenting in general. Personally, I think having as much information about one's cancer is good and possibly useful in decision-making. Do you know if your friend was getting regular biopsies? I don't know if or how Decipher risk is affecting ADT duration.

Am I wrong in thinking that the 2-yr ADT for high-risk men has become 1.5 yr?

Djin

Post Edited (DjinTonic) : 9/13/2024 12:18:21 PM (GMT-4)

Posted 9/13/2024 1:14 PM (GMT -5)
I was on AS for four years. Started at GL-6 and finished at GL-8 before treatment. I know the time on ADT has come down over the years. Originally my Uro said 24 months, but the research changed while I was Firmagon for one month. When I started Orgovyx he said that 18 months would be OK. I have no idea if the time has come down to 1.5 years now for high risk.
My best to all
Jack
Posted 9/14/2024 1:05 AM (GMT -5)
They had me on AS for 5 years. Four biopsies (12 sticks). Last one found one 3+4. Two 3+3's. A couple docs told me studies show that AS is safe for some 3+4 patients. I said thanks but no thanks. Cut me. Glad I didn't take his advice. Path report indicated it grew outside the capsule pT3a. Malignancy abutted the margin. Still undetectable. Knock on wood. Of course, hindsight is 20/20 but knowing what I know today I wouldn't have spent 5 years on AS. Back then (2016 op) I wasn't offered an MRI. Doc said there wasn't enough evidence to make it worthwhile. Easy for him to say. I'd like to see some medical papers that follow guys on AS for a significant number of years and how many ended up with Gleasons > than or = to 8. Anecdotally, I've heard or read quite a number of stories that turned out badly. More reliable tests are available today that weren't back then. It must have been like walking through a minefield back in the 20th century.
Posted 9/14/2024 4:58 AM (GMT -5)
I opted by surgery and I had the same upgrade in the path report. Although the biopsy showed only a tiny fraction of G6 in two cores, MRI suggested more significant desease.This was crucial to decide my treatment.
Posted 9/14/2024 7:37 AM (GMT -5)

DjinTonic said...

Pratoman said...
Good advice Djin. Wonder if I should mention that to him now, although at this point it wouldn't affect treatment protocol, he's already on the road.
On the other hand, if his decipher score came back low risk, would it be a reason to talk to the MO about reducing the 2 year duration of ADT?

I was commenting in general. Personally, I think having as much information about one's cancer is good and possibly useful in decision-making. Do you know if your friend was getting regular biopsies? I don't know if or how Decipher risk is affecting ADT duration.

Am I wrong in thinking that the 2-yr ADT for high-risk men has become 1.5 yr?

Djin

I think you are correct, at least from what I have read here about members conversations with their doctors, probably 1.5 years. I should mention that to him thanks.

Regarding the question "am I wrong?" .... Djin, all I can say is, I thought you were wrong once, but I was wrong LOL (can't claim that as wrong, its something my wife says to me (about herself, not me) all the time LOL>
Posted 9/14/2024 7:38 AM (GMT -5)

Sr Sailor said...
Nothing wrong with that IMRT+ADT therapy for your friend.
Based on my own experience and reading, I would have chosen a combination therapy (SBRT + IMRT or brachy + IMRT) + ADT, assuming reasonably convenient access to a high-quality treatment center.

SS, I could be wrong, but my understanding is the don't do SBRT on Gleason 8
Posted 9/14/2024 7:42 AM (GMT -5)

TJ123 said...
They had me on AS for 5 years. Four biopsies (12 sticks). Last one found one 3+4. Two 3+3's. A couple docs told me studies show that AS is safe for some 3+4 patients. I said thanks but no thanks. Cut me. Glad I didn't take his advice. Path report indicated it grew outside the capsule pT3a. Malignancy abutted the margin. Still undetectable. Knock on wood. Of course, hindsight is 20/20 but knowing what I know today I wouldn't have spent 5 years on AS. Back then (2016 op) I wasn't offered an MRI. Doc said there wasn't enough evidence to make it worthwhile. Easy for him to say. I'd like to see some medical papers that follow guys on AS for a significant number of years and how many ended up with Gleasons > than or = to 8. Anecdotally, I've heard or read quite a number of stories that turned out badly. More reliable tests are available today that weren't back then. It must have been like walking through a minefield back in the 20th century.

TJ, my understanding is that AS has been shown and proven safe for G6, and probably G7(3+4). But the studies showing that are based on patients staying on a very strict protocol of periodic biopsies, PSA testing, and now, MRIs. Thats a big if, there are doctors that do more of a "watch and wait" approach and call it AS
Posted 9/14/2024 9:20 AM (GMT -5)
Have to be careful when saying the G6 became G8. That, as far as we know, does not happen. The G6 is still there, but G8 has also developed. Current understanding is that G grade development is not progressive ie, 3 converts to 4 and 4 converts to 5. The current knowledge is that 3 stays an 3 and 4 is born as a 4.

What has most likely happened due to the time frame given is that when he was first diagnosed he had G3 that was detected and he also had G4 that was too small-sparse to be found. With the passage of the 11 years the G4 has grown to the point that it has now been detected. This is not bad. Rather, to me it is good. Because he has been so closely surveilled the G4 (G8 score) has been found much earlier than otherwise would be the case. Hopefully his treatment will effectively arrest the cancer.

What we don’t know from Ken’s info is how much G8 has been found? One, or multiple cores? What percentage of the positive cores found? All this is important. Either way, he is now high risk and systemic treatment is indicated. Also, for treatment, I would have preferred to se combination IMRT and HDR-BT as it has shown superior results with high risk PCa. I would also hope that the IMRT is being extended to include the pelvic lymph nodes. SrSailor, you mention combination of IMRT and SBRT, but I am not aware of that combination being used as both are simply external beam radiotherapy. SBRT is usually limited to intermediate risk and not used in combination with BT.
Posted 9/14/2024 9:56 AM (GMT -5)
All the more this shows how important diligence is with AS. I have a friend who is going on 4 years of AS. His PSA is rising with age, and he's going in for another MRI soon. He's had several biopsies and MRI's so far, and he's got a great attitude: If it changes, he's good because he's had a quality 4 years since diagnosis to this point.

Ken, let's hope your friend does well with his treatment!
Posted 9/14/2024 8:59 PM (GMT -5)
Thanks guys. JNF, while your points are to some extent, semantics (I probably phrased the g6 to g8 comment incorrectly, so my bad), they are points well taken. Thank you. I am not aware of the missing data you mentioned, i.e. # of cores. He is a good friend from my Florida community, but not one of my best friends, so while I gave him some advice (such as asking about Orgyvyx in place of the Lupron, that he is expecting to be given, ), I didn't feel comfortable going to far and overstepping my bounds.

Hal, you are absolutely right, following the protocol is so important. In fact your comments bring to mind another friend of mine, who was diagnosed with G6 about 6-7 years ago, and is still on "AS". I put AS in quotes, because, while he has been checking PSA regularly, and having periodic biopsies (not as often as I think he should, but maybe I am mistaken, every 3 years or so), he has not been having MRIs. the reason being that he has a device implanted in his chest for a heart condition, not a pacemaker, but something similar, that precludes him from getting MRIs. I wonder if there is an alternative that would work. (ct? anything else?)
Posted 9/15/2024 12:18 AM (GMT -5)

Pratoman said...
A friend of mine, has been on Active Surveillance for 11 years. I never even knew. He was G6. I just found out that he had a biopsy, I believe it was a routine biopsy, part of the AS protocol, his PSA was up a bit, but it was not crazy, it was 6.something.
He is now a Gleason 8

So he starts 2 years of Lupron on Friday, and will have 8 weeks of External Beam Radiation.
I suggested he ask about ORGOVYX before taking the shot.

Just thought I would mention this, g6 to g8 is quite a change. He did have a PSAM Pet Scan which showed nothing outside the prostate.

perhaps he was always G8. there's always a risk when you don't treat cancer
Posted 9/16/2024 6:25 AM (GMT -5)
F8, possible, but 11 years with no issues, and a negative PSMA PET scan with a G8? What are the chances. I'm guessing a relatively new growth, that was, unlike the original cancer diagnosed 11 years ago, was G8
Posted 9/16/2024 6:47 AM (GMT -5)
Remember, cancer starts with one cell. It takes millions of divisions and years of growth before the tumor is formed and large enough to be detected. With PCa being multi-focal, many men will have numerous starts to the cancer formation. Tumors can be very different ages. Sometime during his life a G4 started and just recently was it became enough to be detected. When did the first cell develop? No one can know. It could have been twenty years ago or five years ago, or whenever. It was long enough ago to be able to grow to a point of detection.

But none of that matters. He is now known to be G8, high risk, and is treating appropriate to the risk. Look forward, not backward.
Posted 9/19/2024 10:55 AM (GMT -5)
I was on AS for 7 years. In that time I had quarterly PSA draws, 2 biopsies, 6 MRI's and 1 PET MRI PSMA before deciding on intervention. Continual testing is important.
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