I have a question about active surveillance opinion

[Azbound]

I kind of asked this question before but yesterday I went for a PET scan nothing found I've had an MRI pirad 2 negative bone scan negative CAT scan negative. But I was told I have three plus four Gleason equals seven. PSA fell from 7.3 to 4.5. active surveillance? I'm sure they want me to do surgery or radiation. Talking to someone about CyberKnife right after Christmas but wondering why I can't go in after surveillance if they can't find anything on all these scans?

[Justfor_]

PIRADS 2, PSA almost halving without treatment and Gleason Score 3+4 don't match together. Get a more consistent picture of your case before deciding on treatment plans.

[Azbound in reply to Justfor_]

MRI was pirad 2 in fact two of them over to past 18 months both pirad 2 and nothing found on bone scan. Cat scan. And PET scan. But biopsy showed 3 + 4 Gleason.

[Justfor_ in reply to Azbound]

Did you have freePSA tests along with totalPSA ones. Imaging isn't very reliable in early stages. PSA trajectory is more conclusive and less invasive. Cancerous PSA isn't erratic. Benign PSA from say prostatitis is.

[Azbound in reply to Justfor_]

This is directly from the urologist. The only finding that is of concern is the number of biopsies positive isolated to 1 side of your prostate.

Again, CT scans, and MRI negative.

This is very perplexing as we would assume that both a PSMA PET and MRI should shows some clinically significant disease and in England there was a study demonstrating avoidance of biopsy in PSMA PET and MRI negative and they are even proceeding with radical prostatectomy without biopsy in patients with positive MRI and PSMA.

I actually think it may make more sense to repeat a standard transrectal ultrasound prostate needle biopsy and send pathology off for 2nd opinion to confirm that the actual tissue that was reviewed by other pathologist is actually correct before definitive therapy.

[Tall_Allen]

It depends on the volume of pattern 4. You have to look at the percent cancer in those cores and the percent pattern 4 in those cores. I suggest you get a second opinion on your biopsy slides from Johns Hopkins.

pathology.jhu.edu/patient-c...

Your PSA and PIRADS scores are only suggestive, not dispositive.

[allie2020]

Out of a 12 core biopsy so half six are positive with the percentages stated above being 4. So six of the cores out of 12 two of them have 30% for two of them have 5%, one has 20% and one has 10%.

I copied the above information from your previous post. I hope TA will weigh in when he sees your %'s of G4. I'm no expert but I had smaller amounts of G4 than you, but a fair amount of cancer over-all. I chose surgery well over six years ago and am very happy with my decision.

[Azbound]

MRI was pirad 2 CAT scan nothing .bone scan nothing. I know psma pet scat nothing found I'm not sure I understand how none of these tests can not see any kind of tumor unless it was very small but six of my 12 cores are anywhere from 5% to 30 percent four.

[maley2711 in reply to Azbound]

None of those scans is anywhere close to 100% sensitive for detecting metastasis, which is the reason to have those scans. Acting AFTER those scans detect metastases is too late!!!!!!!!

VERY low probability of any durable cure once metastasis has been detected...you wiill endure unending treatments for the rest of your life!!!!! If you look at MSK prostate cancer nomograms(google) , you can look at mortality risk for a man who has surgery/removal and who has your diagnostic data.......versus a man who does not have initial curative treatment BEFORE metastasis is detected. At the bottom of the nomogram page, click on the life expectancy option for alook at the probabilities if you decline pre-metastasis treatment.

Also Google surgery and radiation side effects for radiation and surgery.

After you have further educated yourself, then you can value the benefits of curative treatments vs the risk of the associated side effects!!! A very personal decision indeed,,,,,each of us my look at the risk and reward thru a different lens!!

[Azbound in reply to maley2711]

Not to be rude but I have educated myself much more than you about a 3 + 4 Gleason . In England with an MRI and a psma pet scan when it picks up prostate cancer which by the way that's what a psma pet scan does. they don't even bother with a biopsy they automatically do surgery or radiation. MRI and psma pet scan are very accurate at detecting prostate cancer. Also an oncologist that I went to with my decipher score of 0.41 told me that it is a 3.8% risk of prostate cancer mortality with standard therapy. For 15 years. And he said you add approximately 2% on that with no treatment at all. Not sure where you're getting your statistics from. And if nothing shows up on an MRI CAT scan and a bone scan and a psma CAT scan. Maybe you can explain to me how they're going to know if you have radiation where the radiate at if you use sbrt. The biopsy showed on one side all the scans showed no prostate cancer found or no lesion found. so where are you going to radiate? just wipe out the whole side? Or just get it surgically ripped out?! Is that the answer. Talk about overtreatment for a grade two stage 1 prostate cancer? That's why they have CyberKnife proton Beam and focal therapies. Now if maybe you're talking about a 8 nine or a 10 I'd understand. who said anything about doing nothing? Active surveillance is a treatment. And to say a psma pet scan is not accurate is totally inaccurate.PSMA PET scan is considered highly accurate at detecting prostate cancer, particularly when it has spread to other parts of the body, with studies showing an accuracy rate of around 90%, meaning it can correctly identify prostate cancer in most cases; however, it's not perfect, as a small percentage of prostate cancers may not express the PSMA protein needed for d

High sensitivity:

Compared to traditional imaging methods, PSMA PET scans have significantly higher sensitivity for detecting prostate cancer, so no it's not 100%, but two mri's pet scan bone scan and cat Scan how many times could they all miss a tumor? Unless it's very small.

[addicted2cycling in reply to Azbound]

just remember - High PSA does not always mean PCa IS present

just remember - Low PSA does not always mean PCa IS NOT present

just remember - SCANS are not 100% accurate in detecting mets.

Due diligence + more Due diligence before treatment decision IMO is wise

[Xavier10 in reply to Azbound]

Pet Scan is for spread. Not for cancer within the prostate. So, you have cancer in your prostate for sure. It's just a matter whether you want to do anything about it.

[Azbound in reply to Xavier10]

That's not true that's what a psma pet scan is for. The CAT scan and bone scan is for methatizing the psma PET scan would detect prostate cancer. Also a MRI which I had two of in the past 18 months will also is about 90% accurate detecting prostate cancer. Even my urologist is not sure why nothing is showing up on the scans. I've had a psma PET scan a CAT scan a MRI and a bone scan. All are negative. He suggested a repeat biopsy but I just had it done two months ago.

[maley2711 in reply to Azbound]

why are you asking for opinions, when you are so confident in your own knowledge?

I'be surprised that your PSMA scan picked up nothing in your prostate....but relying on PSMA results for the prostate is not SOC at this time in the USA......USA and NIH not always in agreement. For PIRADS 1-2, probabillity of significant cancer is VERY low.......but NOT zero...and witha PIRADS 4-5, very HIGH , but not 95-100% !!!

Since you didn't bother, here is the MSK nomogram for pre-RP expected results for men who then have RP.This is based on their own database of the last 10,000 men to have RP at their famous high volume institute. You can enter your own numbers, and also play with it to see probabilities using different biopsy results, etc.

mskcc.org/nomograms/prostat...

Then here is the nomogram for men who declined treatment/RP but were, to the limitations of scanning at that time, non-metastatic. Nomograms for metastatic men generally indicate a 3-5 yr life expectany...ie half are dead in 3-5 years....some in 1 yr, and the lucky few might make another 10-15 years 🙂🙂🙂🙂🙂🙂.

webcore.mskcc.org/survey/su...

Here are all the nomograms........

mskcc.org/nomograms/prostate

Of course, many other institutions haave developed nomograms, and none are predictive, just suggestive. MANY MANY metastases are missed by all types of scans, for various reeasons...one prominent reason is size of metastasis, and another is that the specific mutation is not PSMA -specific.

SSince you are Mr. Know it all, and have "corrected" a number of men here, not just yours truly, why are you posting here?

[Azbound in reply to maley2711]

Well first of all I guess you would be surprised then.. because the pet Scan picked up nothing....I didn't realize correcting the misstatement made me Mr know it All. Was it the statement I made ..active surveillance is a treatment.? Or I was told the psma pet Scan does not pick up cancer in the prostate "so you have cancer for sure." that isn't correct is it? .I guess I thought of it as being informed.. call me Bullwinkle then. Thanks for your input.

[maley2711 in reply to Azbound]

check out the nomograms!

I am not the only you deemed incorrect, and I DO NOT agree with your corrections!!! But, who cares? You came here for opinons, but you mostly blew off those opinions as disagreeing with what you believe to be the facts.

I suggest you try Google and pubmed and look for sensitivity and specificity of your favored scans for PC detection. Also, you can access the NCCN physician access page and create an account and take a look at US guidelines re your post.

I finally had treatment for 4+5 after 4+ years......the biopsy was standard 12 core biopsy, plus 6 from the PIRADS 5 area. One core < 10% 3+3 was found, and another < 5-10% 4+5 was found.....all 6 PIRADS 5 cores were BENIGN!! I had radiation, with an extra blast to the PIRADS 5 area, plus I'm trying to make the 18-24 months of ADT/Lupron.....dealing with SEs!! Right now, concerned about the edema in my left ankle/foot?

I think I may have erred in mentioning the NIH....I meant the NHS!!

Good luck with your decisions!!!

[Azbound in reply to maley2711]

Good luck. Hope it works out for you.

[maley2711 in reply to Azbound]

" PSMA PET also is being explored as a tool for primary PCa staging, particularly in patients with high-risk disease features. PSMA PET in this setting is much more specific and also more sensitive than conventional imaging, but it remains unclear whether using PSMA PET for primary staging affects patient outcomes. Based on what we know now, PSMA PET should be considered for evaluating newly diagnosed intermediate or higher-risk PCa, and its performance suggests that prior conventional imaging need not be a prerequisite for its use. PSMA PET has been found to be more sensitive for nodal staging than MRI, abdominal contrast-enhanced CT, or choline PET/CT, but it can miss small lymph node metastases.16,17 This is a great reminder that PSMA PET does not replace the microscope and should not be regarded as a substitute for pelvic node dissection—indeed, its sensitivity for detecting nodal metastases was only 40% in two recent studies where histopathology was the reference standard.18,19 ? "

[Azbound in reply to maley2711]

This is a message directly from the urologist as he States he's perplexed and I would think he would know about and have more knowledge about scans and the accuracy thereof then anyone ....,.. The only finding that is of concern is the number of biopsies positive isolated to 1 side of your prostate.

Again, CT scans, and MRI negative.

This is very perplexing as we would assume that both a PSMA PET and MRI should shows some clinically significant disease and in England there was a study demonstrating avoidance of biopsy in PSMA PET and MRI negative and they are even proceeding with radical prostatectomy without biopsy in patients with positive MRI and PSMA.

I actually think it may make more sense to repeat a standard transrectal ultrasound prostate needle biopsy and send pathology off for 2nd opinion to confirm that the actual tissue that was reviewed by other pathologist is actually correct before definitive therapy.

[Xavier10 in reply to Azbound]

PSMA can miss low level cancer in the prostate. apparently an MRI can also if your biopsy is correct. so it seems to me you should follow your doctor's advice and redo the biopsy or perhaps have it looked at by Johns Hopkins. Maybe it's just Gleason 6. I think that's probably good news. There are some rare cancers called neuroendocrine (God forbid) that don't express psma and have low psas but seems like the biopsy would have noted that. seems like. There is a different kind of PET scan for that. DOTATE or something. Seems like decipher would completely highlight that though in the Genomic grid. But....Decipher just takes one slice. Might not be the right slice. They use the one with the highest level of Grade 4. Lots of maybes and what ifs here. Will drive you crazy. You are figuring out like the rest of us amateurs that there are no definites in prostate cancer, just lots of probablies and maybes. Until it gets bad of course. I still stand by my original statement that psma is for diagnoses of whether it is metastatic and oligometastatic. and even then not for sure. this issue was discussed at length a week or two ago. you can revisit that question. pretty interesting. I think it is also hard to separate out uptake from the prostate sometimes given the location to the bladder, since the body gets rid of the isotope and collects there. maybe. healthunlocked.com/prostate...

[Azbound in reply to Xavier10]

I just find it hard to believe myself but what do I know that two MRIs in an 18-month period would show pirad 2. Along with every other scan that they did. All of them would have to miss the cancer. I felt at one point they were going to give me cancer from all the radioactive tracers they or trying to give me cancer trying to find cancer by Just wondering what the chances of that are? Decipher score is 0.41 which is on the low end I believe. and my PSA went from 7.3 to not sure why but I know that it can be erratic I have an appointment on 26th with the CyberKnife oncologist I'll see what he says he's been doing it 30 years it'll be my first visit. I just don't want to treat something and get the side effects is my concern if they can't even see it. I can only think it must be very small but again what do I know I'll ask him on the 26th. My urologist was perplexed but of course they're always going to want to do treatment..

[Androgel123]

OMG, active surveillance for what? Man live your life and be happy!