My PSA was 3.5 at diagnosis (1.5 yrs ago). G9 Mets to bladder and pelvic bone. Lupron and Erleada instantly brought PSA to undetectable and for the past 1.5 yrs. Question: Seems unusual that my PCa was this advanced with a 3.5 PSA? Going forward, I’m also concerned that PSA is a key marker for me. Make any sense? Appreciate any thoughts...love this group!!
Low PSA Expression: My PSA was 3.5 at... - Advanced Prostate...
Low PSA Expression
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Canton44
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Same here. My PSA was 4.2 at diagnosis and has never been higher over the 9 years I’ve been fighting prostate cancer, yet here we both are with metastatic disease.
Earlier detection is needed.
Absolutely, I was always told I was fine (over the years). I should have asked for a scan.
An issue is that, when the PSA is accelerating at, say 2.0 most insurance won’t even pay for the biopsy let alone an expensive scan.
Tallguy...I’m still on LupronXgeva and Erleada. Just finished 37 rad treatments to all cancer sites and 60 seeds into prostrate. RO claims scans show NED!!! Hopeful, but slightly skeptical.
It is hopeful yet inconclusive. Good that you are still hormone sensitive. Need to keep on the Lupron + Erleada for at least 24 months after the radiation to help kill the treated cancer cells. Perhaps after 6 months or one year a PSMA PET scan might show if there is anything new. Though the RT treated sites can still light up even if they have been successfully treated. They can be very slow to die. Happy for you being NED on scans for now brother. 👍👍
🤞🙏
I have been on Lupron &Erleada for 2 yrs. Then radiation in Jan 2021. Should I still wait 2 more years?
in reply to Canton44
Ned great! Now keep going !
Wow. All about the bottom line - profits
Insurance customers don't want to pay more for coverage, and yes private insurers do want , and need, to earn a profit. Raise rates to rpovide fuller coverage, and they lose customers....Econ 101. On the other hand , because I won an appeal, there is always that route, and I learned that in many or most state, an individual who loses an appeal at the company level has the right to appeal to a state insurance board. Interestingly, when in Medicare system, does an individual have the right to appeal to an independent board? The same dynamics apply..the taxpayer insurance consumers don't want to pay more taxes for more benefits for someone else. SeeBritain's and Canada's problems with taxpayer underfunding.
What was hystoligy?... ine was ductal....g9 mets psa 6.5 .. .termed veryaggressive rare cribiform
mine was
My PSA was 12. Had my prostate removed. Radiation. Then I still continued to have persistent PSA. Very low below 1. I am metastasized to my lungs. Found at a trial scan for PSMA at UCSF. . PSA then 1.9. My Oncologists don't look at my PSA as my "indicator" or driver. I always get ultra PSA tests because my numbers are not big. If they move then they do chest scans.. I'm scanned multiple times a year because of this. PSA movement or not. The beast travels in many different and funny ways!
How are they treating your lung mets?
You are right to question whether PSA is a very valuable biomarker for you. You have to use more frequent imaging.
PSA expression is often reduced with GS9/10.
Valuable advice, thanks TA
TA, my disease is vey similar to Canton44. Currently undetectable PSA, metastatic and GS9 at diagnosis in March 2020. When you say more frequent scanning, how often do you recommend?
Before and after each therapy - CT scans every 3 months
TA, does a non-PSMA CT show anything that a PSMA PET/CT does not show?
The "CT" in PET/CT is a CT. They simultaneously do a PET image and a CT image.
Thanks TA. Will raise with my MO.
My PSA has never been above 1.4, and in May was under .20 , but yet my cancer just grew in the last 30 days and spread into a muscle.
The low (<2.5) PSA reporting cancers are the most aggressive with GS9 or GS10,
Thanks, my NED after 1.5 yrs of ADT, Radiation and Brachytherapy sounds great, but I’m pushing for frequent scans for confirmation vs relying on the PSA results. Docs want to take me off Lupron, ERLEADA and Xgeva at end of this year. Thoughts?
To me that makes sense. The you could see whether or not you remain BNED with clear repeat scans (including PSMA scan) and undetectable PSA. Then can go after remaining cancer, including micro metastasis with docetaxel chemo with or before resuming ADT. Also Lu177-PSMA treatment may be available. Though insurance unlikely to pay before castrate resistant. So there is that stupid problem again. Good luck. Live well.
Thanks so much, Mateo!!
Nalakrats. Yes, both
Same here. 4.5 at diagnosis. Rapid drop to undetectable on Lupron. Never should have taken the opportunity for Lupron holidays. Both resulted in rapidly expanding bone mets. Even now, at the point of castrate resistance (0.3), I have progression in my spine and femur.
Thanks Tony. I will have a difficult decision to make about going off Lupron and Erleada.
After my second holiday, I went on Lupron and Erleada. It worked well for me for 19 months before I had progression and a PSA increase to 0.2.
Think hard about accepting any Lupron vacations. MOs think they're doing you a big favor. But really, it's just a diagnostic tool to see how aggressive your PC is with potentially disastrous consequences.
Good luck.
ride the pony till it quits jmho
My PSA was 2.7 at diagnosis which was end of October 2017. My old-fashioned GP did a digital rectal exam and felt a nodule. He suggested, it was probably nothing, but I should see a urologist to get an expert opinion. My Dad died from prostate cancer in 1984 at the age of 60. I was 63 and felt invincible. I can’t tell you why I listened and went to the urologist. Within seconds of beginning the physical exam I heard concern and learned that his experience indicated by feel that there was trouble. He said 65% I had cancer present. Then he probed with ultrasound and raised the odds to 75%. I was shocked! Biopsy confirmed his gut feeling along with the bad news of G9 aggressive mutation.
I raced get that Cancer out of my body and had a prostatectomy in December 2017.
Many Doctors do not do digital exams as part of annual physical. It has also become more difficult to get a PSA exam. I have been told that the math doesn’t justify the expense and it causes unnecessary anxiety in patients.
I find that incomprehensible. I also see big improvements in diagnostics. In the meantime, it is ridiculous to hold back on any test possible. The anxiety of the disease is much worse than a couple of days to check out false positives. False negatives are a thing and people should be aware of low PSA disease. I was not and most of the people I speak to are not aware. I always make it part of my story when people ask questions about my situation. I have convinced many to insist on more thorough Prostate analytics and to leave Doctors who don’t believe in digital rectal exams. I have one friend who was “lucky” enough to get a cancer diagnosis much earlier than he would have as a result of my preaching.
Thanks for bringing up the low PSA subject. IMHO it is important. My son is 31 and I hope he remembers these things as time goes on.
Philly
Totally agree! I preach it also. I tell everyone to get an CT/MRI regardless of how low their PSA is.
My GP did not do a DRE when my PSA went from 2.5 to 5.4 then to 7.4, he only did it when I had urinary symptoms and felt a lump, PSA was 118.6 then 156.5 when I saw the oncologist 2 months later, I immediately started treatments. If he had insisted and done a DRE and felt some suspicious lumps I would have been in a different place now, the oncologist thought I refused treatment but just shook his head when he found out that a DRE was never done when the PSA started to rise. Now on arbitrone with prednisone, still on Lupton and xgeva for bone strength with so many hormone treatments to help prevent fractures.
Your story makes my blood boil. It is hard to know why a GP would be so irresponsible. I suppose that it is probably a financial decision driven by the insurance system, but I don't know. Another takeaway for me is, when in doubt, always go to a specialist/expert on the subject matter.
The other problem is insurance might not have paid for it until it goes over 4 and it took only a couple of years or so to hit the 7.4. some have a PSA below 4 then find out they have it, the doctor's figure if it is 4 or under with no symptoms then you are safe, and no history of cancer in my family tree. Now my brother had a tumor in the tube from his kidney resulting in loseing it and had cancer in the bladder years ago. He supposedly had colon cancer a year ago but without treatments at a different hospital after a CT scan he does not have cancer. My boss had had breast cancer three times and there is a video of a guy who had his prostate removed, 3 years later it came back so they did radiation then 3 years later it showed up in the glands which they removed. Each time they said he was cancer free but it showed up again 4 years later and us being treated again. My sister was healthy, excercised and ate healthy never smoked, lived in the country yet she died of lung cancer in 2019. So even if I had the prostate removed it still could have come back down the road, considering I am 70, lead a healthy lifestyle, never smoked, watch my diet, had only 4 Mets to begin with that had healed with no bone pain I am doing good . The last scan showed no progression in the CT and bone scan and the meds are keeping the PSA down I feel lucky after reading what others are going thru with this disease my neighbor if 54 had ALS and is terminal, such a nice person and family to go through that disease which leads to death after 3 to 5 years if lucky with a deteration of the body .
My dad is in the same boat - low expression PSA when diagnosed. Even now, when he undergoes treatment, his PSA remains below <1 but we take any small uptick as a significant change. A change of 0.2 to 0.3 is big for us.
One thing the oncologist said recently is that his cancer doesn't seem to testosterone driven because of the low PSA. I am not sure if this is true.
Thanks. That is the million $ question I am pursuing with docs.
The old PSA cutoff for biopsy was set at 4.0 because that gave a detection rate of 20%. However, while fewer cancers would be detected at lower PSAs, they are not lesser cancers, but you can't biopsy everyone.
When a nodule was detected by DRE, my PSA was only 0.8. When my 3-monthly PSA jumped from 1.7 to 3.0, a second biopsy found Gleason 4+3. Turned out to be too late for successful surgery. I should have had it removed when 1.7 - or even at 0.8 (LOL), has that ever been done? C'est la vie - I'm still kicking.
Nonetheless, PSA continues to be a useful test for me.
-Patrick
Similar here. GS9 with PSA at 1.7 at dx went up to 2.9 started ADT, went fast to undetectable for eight months since then. My low PSA does not lead to any changed treatment however more tests.
Ive also been on erleada/lupron pretty much since dx....se suck...brain fog muscle loss joint pain...
Hey Canton! I was g8,and have been undetectable over six years . My Psa high was 20 . Low compared to most.. take care .
I had a PSA of 4.1, then six months later 5.2, leading to a biopsy. Even then, the biopsy was done with a "well, unlikely to be a problem, but let's check" viewpoint. It found 6 of 12 cores positive, a couple 100% involved, a couple more at 70-80%. And... G9 5+4. So despite a marginal PSA my case was pretty well off to the races by then.
The PSA may not be a good metric for those of us with high Gleason scores. So how do we identify possible recurrence, given this issue? Repeated imaging? My onco was adamant we weren't doing *anything* until the PSA exceeded 2.0 again. Imaging would have been an out-of-pocket expense if I insisted on it.
Based on my research, with my PSA drifting up to 1.0 a couple years after ending ADT, I decided to restart permanent ADT. I don't trust the PSA to be a reasonable metric, and at a PSA of 1.0 no one was interested in doing any imaging. So far, my PSA has remained undetectable for about 2 years, so I'm optimistic. No holidays, not with a G9. Not worth it.
It seems the G9/10 cases are not well understood, and a bit orphaned in their treatment plans.
I was 39 with a 1.5 PSA and occasional blood in the urine. Local urologist didn't think it was high so we just kind of sat on it for six months. Went back, still 1.5, had MRI, turns out it was Gleason 9 (4+5). Clean bone scan, thank goodness. Had RP a month ago and Firmagon a week ago. RT this fall. Off we go....
in reply to 39cancer
Are you saying that you were 39 years old? If so? I’ve got mucho respect for the younger a man gets hit by pc . Wtf?😳
39cancer in reply to
39 when diagnosed, 40 now.
in reply to 39cancer
1.5 ? Wow that just might be the lowest I’ve seen . Dam ? The youngest and the lowest PSA . maybe you will just maybe you’ll be the first to outlive it or witness a find of a cure . 🤞✌️
Indeed, PSA may not be a good marker for us with low PSA and high Gleason (plus intradutal and BRCA2 mutation in my case).So for monitoring I added a CTC Circulating Tumor Cell count of my blood with the Cell Search system. But there are false positives and false negatives with it. The ISET CTC count appears to be superior: frontiersin.org/articles/10...
I am searching for a lab to have this test. Does anyone have any experience with it?
Thx Purple
Hi Purple-Bike,Good your MO is recommending CTC testing. Cell Search is FDA approved and can identify Cytokeratin Positive (CK+) CTCs. Another available test is from Biocept. It can find CK+ and CK- CTCs. Best wishes for finding Zero CTCs. If anyone on this forum wants more info on the Biocept test please feel free to message me as I have had over half a dozen of this wet biopsy test since May 2019.
Hi Fanger 1,
Finally I get around to answering you – below is our previous communication.
Indeed, Biocept seems better than Cell Search, given that it also identifies Cytokeratin Negative CTCs. It also identifies mesenchymal markers, which I have already forgotten what it is but was impressed when I researched it.
But is it better than the ISET CTC test? My guess is that ISET is even better but this is complicated stuff I am not sure, if you can form an opinion I am eager to hear! ISET, based on biological properties of CTCs, is claimed to be better than the marker-based techniques which Cell Search and Biocept use. But a head-to-head comparison is only attempted for ISET vs Cellsearch.
See an article on ISET frontiersin.org/articles/10...
and a study comparing available CTC detection methodologies ncbi.nlm.nih.gov/pmc/articl...
The latter was heavy reading for me and I have color-marked passages for easier reading in a version stored in my computer, as well as for the less hard-to-understand ISET article, let me know if you would like to have these e-mailed to you.
Hi Purple-Bike,
Thank you for the information on ISET CTCs. The company has a nice website and I like the technology. I submitted my inquiry and wouldn't mind having this test run myself. I look forward to asking their scientists about CTCs in general. From what I read, it looks like they are detecting PSMA on their CTCs by ICC which if true is very impressive. There is another prominent researchers, Misha Beltran, that uses another platform for CTC evaluation using EPIC platform. That company has an FDA approved test for the splice gene varient, AR-V7.
I have a naturopathic oncologist in Arizona that I teleconsult with that's on Biocept advisory board and my local MO orders this test for me every 4-6 month. My CK+ CTCs have been negative for quite some time. I do still test positive for a small amount of CK- CTC. I'm happy to communicate with you via private message to share my test results with you. It can't hurt for you to get the Biocept and ISET test run. The literature concludes having >5 CTCs per 7.5 mL is worse for disease progression. The newer ICC and FISH staining techniques for both of these test methods can give additional information beyond just enumeration. Biocept tests for the following on the surface of the CTCs:
c-MET Gene Amplification by FISH
AR Analysis by ICC
EGFR Gene Amplification by FISH
AR-V7 Analysis by ICC
C-Myc Gene Amplification by FISH
PTEN Gene Deletion by FISH
pan-TRK Analysis by ICC
NTRK1 Gene Rearrangement by FISH
That's alot of Fish
Best of luck with your case🖖
Thank you, Fanger1.
ISET:s superiority to marker-based CTC count methods is in principle because "The cytology-based ISET®-CTC-test is independent of the presence of any tumor-surface-markers on cancer cells, such as the Epithelial-Cell-Adhesion-Molecule (EpCAM) markers (and Cytokeratin, my note), used by most other CTC technologies (20, 21). In fact, the ISET®-CTC-test can detect CTC of all cancer types, including epithelial and non-epithelial tumors (22), can distinguish between single-CTC and CTC-clusters (23, 24), with CTC-clusters having greater metastasing potential associated with shorter overall survival (25).
Marker-based CTC-tests have an implicit high risk of false negative results, as cancer cells undergo frequent changes in protein expression and have the potential to lose surface markers (such as EpCAM and Cytokeratin, my note), often in later stages of cancer (16). Marker-based CTC-tests can also lead to false-positive-results, as many tumor-markers can be expressed on non-pathological cells, including EPCAM and other markers (26–29).
While it had been recognized that CTC were better prognostic biomarkers than the PSA blood levels for prostate cancer, the CTC detection rate of 57–62% using the marker-based CTC test CellSearch® was considered non-optimal (30, 31). In contrast, the cytology-based ISET®-CTC-test has proven to be of high sensitivity (17) and high specificity (10, 23, 32, 33), and is therefore superior to marker-based CTC-tests in detecting true CTC (16). The ISET®-CTC-test can find one CTC/10 ml of blood, corresponding to 500 CTC/5L of blood in an adult, which is extremely sensitive (17".
However, an article from 2017 indicates shortcomings of ISET, with missing of 20-50 % of CTCs which is not mentioned in the article above or in any of the other (few) articles I read on ISET:
From rarecells.com/wp-content/up...
"CTCs, like the ISET system, rely on the general assumption that
circulating tumor cells are larger than the other components found in
the blood of a patient. However, this type of enrichment has some
important limitations, as this assumption is not based on the size of
actual CTCs in humans, but largely on measurements of cells from cell
lines in culture. A significant portion of CTCs in samples from patients
have the same size or are sometimes even smaller than the white blood
cells in a blood sample (Figure 2). Furthermore, it has been reported
that these very small CTCs are associated with worse disease
outcome,29 emphasizing the importance of including these cell in
CTC analysis. Also, it has been reported that CTC detection methods
based on cell size may miss between 20% and 50% of CTCs"30
This was not good to find! Is the supposed superiority of ISET a false lead?
The article goes on to state: "An important strength of the ISET system, however, is that it allows for different IF stains to be used on the isolated CTCs. In this manner, different phenotypic subpopulations, such as epithelial and mesenchymal-like CTCs, can be identified, characterized, and enumerated
(Figure 3)."
It is not easy arriving at the most relevant CTC test to monitor PCa!
I don't understand your response. My comments were around G9 AND low PSA, as they seem to be related. Whatever.
in reply to VHRguy
No offense intended . I just agreed that is was a very low PSA.
VHRguy in reply to
Oh, ok! Thanks for clarifying. Sigh... yeah, these low PSA cases are hard to handle. The high Gleason / low PSA combo is a little scary, and for better or worse they're so unusual that there just aren't many studies to guide treatment planning.
Agree, my MO says PSA is king now. I have a call with him set up to discuss regular scans even though PSA is undetectable. Ductal Adenocarcinoma. He doesn’t seem to agree. 🤓
My medical oncologist wouldn't agree to do anything about possible recurrence until the PSA got over 2.0. When my ADT released, and T was recovering well, a few short months later my PSA also began rising. While it was still less than 0.5 mg/dL, my med onc at the time wanted me to go get a scan to look for the source. I wasn't worried, because I'd had radiation and ADT as primary therapy, so I still had a prostate. That tissue could still make some level of PSA, I figured. But I did check about scans.
Well, even the offices doing the scans didn't want to talk to me! They said they'd be pointless unless the PSA was at least 2.0, and probably higher for a good scan. It also was going to be completely out of pocket because the insurance company stood solidly on that number.
So to this day I haven't had any further scans.
in reply to VHRguy
I was gleason 4+4= 8 t-4 but my highest PSA was 20 . Low compared to many. We must admit that no one has really figured out APC yet. Good luck to you .
Yeah it's the shits, but I don't let it bother me too much. Doc seems confident I'll survive. 😂
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