There is one thing confusing me and my father:
He has a Gleason 9 that does not show that much on PSA (he has always had a low PSA, even with mets).
The doctor said that it is no point in checking the cancer with PSMA if the tests dont show high enough PSA. But this confused both of us.
If neither images nor PSA-test are valuable, how will we be able to check on the cancer?
Your doctor is absolutely correct. PSMA scans DoNot show anything meaningful if some one's PSA is 0.2 or less.
Ah, thank you!
Second part of your question is "how we check on the cancer?"
You check on cancer by closely monitoring biomarkers..such as PSA, ALP (both total and bone specific) Testosterone (both total and free) ,Albumin, Hb, Lymphocytes etc.
If you worry about Neuroendocrine change in his cancer then, do check Chromogranin A level and Serum Prolactin level.
S.Chromogranin A comes normal or low,..chances of neuroendocrine type goes very low.
Biomarkers are very valuable and they give you glimpse of what really cancer is doing inside the body.
Thank you!! I will write this down.
How often should one do blood tests? Different doctors tell us different things. I want to be on top of this.
Its up to you..to decide...I like all biomarkers tested every 30 days and plot graphs to closely monitor behavior of PCa and how it is evolving, if at all. ....mainly for my own peace of mind....and that I am able to afford it. Blood counts, Metabolic panel ,NL ratio, PL ratio, CRP ,LDH ,prolactin all are monitored by me each month. (ChromograninA every 6 months.)
There is no definite rule..you can do it every 2 months or every 3 months.
I’m really interested in getting my own PSA midway between my 3 months labs that my MO orders. Yes I’ll have to pay for the PSA thru Request A Test labs then do the blood draw thru Lab Corp. what do you think ? PSA in between 90 day labs?
I think everyone should track their biomarkers (PSA, T, ALP, Hb, Albumin etc) every 4 to 6 weeks and plot a graph to keep close watch on the behavior of prostate cancer.
That's just my personal view..people might have different opinion.
Agree. Urologist or MO’s don’t really want to order PSA and T - levels and ALP and Lymphocytes every 4-6 weeks. Wonder why?
I’ve got most of my Lab reports from the last 8 yrs of PCa time to print them and graph these type of results. Good bad and ugly. Is that easy?
I’d have to order my Labs from Request a Test online. That’s easy.
What do you think?
We can eat at McDonalds OR we can dine at a fine dining place...I like fine dining when it comes to biomarkers...only downside is expense and time.
I shall undertake the 4-6 week PSA and T-level labs pathway. Like you said 'biomarkers' are important to us complicated, complex medically men. I do not care about cost of Labs and the LabCorp lab where I have gone before is only 3 min drive. No time lost. Could walk it from our home easily.
Looks like I order up some PSA and T-Level Labs online tonight from Request-A Test.
Thanks,
Doug
Hi
You can do blod test 1 time every month in : svenskprovtagning in sweden.
You do not need a doctor referral just pay and book an appointment where you live or closer.
G
Follow-up question: in Sweden the standard procedure with recurrent PC is to give the patient bicalutamide and a few weeks later do a PSMA. How is this possible if the bicalutamide makes the PSA drop?
LearnAll: Can you please clarify for me what "ALP" and "Hb" are? Also, in case my M.O. is skeptical about including prolactin in my lab requisitions, what's the best one-liner to convince her to include it (and maybe a link to a strong article that makes this case)?
Hb is Hemoglobin and ALP is alkaline phosphatase. (a bone turnover marker)
The new information is emerging that there are two components in each prostate tumor...one is androgen dependent (fueled by testosterone) and other component is androgen independent (fueled by prolactin)
Each tumor has a mix of these two in varying degrees. Because most MOs are not in touch with newer findings, they keep doing what they have been doing for decades.
I check my prolactin every 3 months only to see if my Pca is becoming Androgen independent or not. So far, my PCa is fully androgen dependent as my prolactin level is very low.
I have never heard about prolactin as a significant marker. I get labs done every 30 days. I will add this today.
Thank you,
Philly
Prolactin is not a biomarker for androgen dependent PCa. There is a new opinion by some researchers that some people have prolactin fueled cancer cells (which are androgen independent.) mixed with androgen dependent cells.
That's why I got serum prolactin level checked. It came low normal and that gives peace of mind. If some one has high levels of serum prolactin, lowering it by VITEX FRUIT or Cabergolin can slow progression if PCa has prolactin fueled cancer cells.
Just my opinion..do your own research..its a new concept..not yet widespread.
LearnAll: I see on Good Rx that the generic variety of Cabergoline comes in 0.5mg tablets. Is there a recommended daily dosage for Cabergoline when it comes to PCa?
0.5 mg a day is considered standard dose. Have you already checked your prolactin level? Is it high ? If in low normal range..you do not need cabergolin.
Diagnosed in 2012 and had prolactin checked 3x from Mar 2013 to Sep 2014: 7.5, 7.7, and 4.6. Started taking cabergoline (can't remember dosage) in Fall 2014. Two tests done in late 2014 and early 2015 showed <1 each time. Stopped taking cabergoline in 2015 under new M.O. and no testing since then. Will ask current M.O. to include prolactin testing going forward. Found this case report which used "0.5mg twice a week" (ncbi.nlm.nih.gov/pmc/articl.... What's your opinion about daily vs. twice weekly?
Yes I read this amazing case report. I think its seems a good idea to keep prolactin level low . Whats the harm ? It might keep that androgen independent cell population in check. I am doing OK with Vitx fruit anfd Ionic Zinc with quercetin from onion juice, red apple skin etc. Prolactin sis 4.8.
Interesting!!! Bedtime reading nr 2.
PSA and ALP are not necessarily markers for some men who had high Gleason low PSA to begin with. These exceptions should have more frequent CT bone scans, i.e. twice a year IMO. My husband was on Zytiga, which everyone, including our onc, thought was working--numbers were great. When my husband got a bone scan a year after the previous one, many new mets lit up despite PSA of .64 and ALP of 62. We were all shocked at that appointment; my husband started chemo shortly thereafter.
Souse21..thanks for pointing out the small possibility of progression in a minority of unusual type of PCa where regular markers do not tell the accurate story.
92% Pca are plain acinar Adennocarcinomas and biomarks giv.e great information in these.
Biomarkers are not very useful in small cell, neuroendocrine, ductal and such unusual variants.
PCa is so darn variable. Despite two genetic tests, my husband has never been diagnosed with small cell, neuroendocrine, or ductal. The only definitive test would be a tissue biopsy, which is hard to obtain and his oncologist hasn't approved getting one. He has responded well in the past to Lupron, radiation, and more recently to chemo, i.e. he's stable until proven otherwise. It's too soon to do any scanning. It's unfortunate he didn't get much, if anything, out of Zytiga. What's weird is that from the get-go all his blood numbers look like those of a totally healthy man. Not!
There is no other scan that is gives more information with his cancer? The low PSA-type?
NO. Not with PSA of less than 0.2
No. No other scan. Not at that PSA.
I was diagnosed with Gleason in November 2017. My PSA was 2.5. I had RP on December 19. By March/April it was clear that my PSA had gone down to .58 but was doubling in less than 30 days. The plan was to radiate my prostate bed, because nothin showed on the scans they did. I requested the Fluciclovine (Auximen) scan, which identified 3 malignant lesions. Insurance covered it, because my Doctor fought for it. My PSA was well below the threshold of 2 at the time.
I developed multiple lesions by April 2019. My PET scan in March of 2020 showed larger lesions, but no metastatic activity.
I am not sure what the rules are in your country. I admire your curiosity and determination and encourage you to keep respectfully challenging the things your Doc says with what you read about. My anecdotal observation is that every cancer has unique aspects and we Pca warriors are decidedly in a trial and error hellscape.
Good Luck
Philly
Thank you, same to you!!
My comment left out the Gleason score. It was 9 with a low PSA. 2.5.
Depends which PSMA one is requesting. I am told that the PSMA Ga68 is more accurate and sensitive than the PSMA F18. It's a big debate at the moment. You may want to check this out with your doctors.
Thank you, I will look this up! Didn’t know there was two different kinds of PSMA.
Sometimes cancer does not express much PSA. Regular scans will be more valuable
to check on progress as well as bloodwork since he has metastises. Prostate cancer is not predictable for sure.
Thank you very much!! Regular scans - you mean CT or MRI? Also: what blood works?
(Got a reply regarding blood works above)
Yes. When I have appointments I always get blood drawn. They check on many things that are indicative of how your cancer is affecting you or being more aggressive. Are you at a research hospital or just local Onc? If a local one, you may consider getting a second opinion and possibly changing to a research hospital like MD Anderson as an example. There are many fine ones around the country (and world) that have clinical trials and experts.
Generally CT and bone scan. Perhaps they use MRI in your country. Scans show progression, if any, where your cancer has metastisized. PSA is not as useful once that happens. My PSA is 145. But my lymph nodes and bones show same size or declining so that is better to know.
Thank you!!
Are MRI better for mets in soft organs?
Follow-up question: in Sweden the standard procedure with recurrent PC is to give the patient bicalutamide and a few weeks later do a PSMA. How is this possible if the bicalutamide makes the PSA drop?
It is well established that at first, one or two months from start, bicalutamide makes the tumors express more PSMA.
Ahaa!! I had no idea. Then I wonder why the other doctor did not want any bicalutamide at all to not disturb the PSMA. Is it the same with Firmagon? My father has had one shot.
My father said that they only give bicalutamide instantly to Gleason 9 or 10 recurrent. Why not everyone then before PSMA? I’m so confused..Thank you for taking the time!
"It is well established...." I think it is very likely that Bicalutamide does increase the PSMA expression. But do you have any study or article reporting this? I found no clinical trial with patients that shows this.
Question then: should not my father be on bicalutamide now?? I have to ask doctors this, so confused.
No, I think not. You will have to compare the original scan which was with no bicalutamide. If he takes it now the comparession will be biased towards the second and will not depict the results of the irradiation.
”No, I think not. You will have to compare the original scan which was with no bicalutamide. If he takes it now the comparession will be biased towards the second and will not depict the results of the irradiation.”
Because the PSMA expression will be too high and not to be trusted after ADT...?
Yes, it will not be comparable to the initial one so you will not know how the RT went. Since he has got the Firmagon you should wait until his testosterone returns to its original value, or at least more than 300, before repeating the PSMA PET CT.
Thank you!! We use a different measurement for T here, 300 what?
Yes, I know ...
He had 25 nmol/l or 720 ng/dl at the original pet scan.
Should wait to reach the normal range's min of 300 ng/dl or 10,4 nmol/l, which is less than half of what he had but sufficient to feed any remaining cancerous cells.
Thank you!! Highly appreciated!
Yes, I will try to find the source of this information and post the link.
"However, detection efficacy was higher in patients who had received ADT (91.7% vs. 78.0%) within 6 mo before imaging (P = 0.0179).
Conclusion: 18F-PSMA-1007 PET/CT offers high detection rates for BCR after radical prostatectomy that are comparable to or better than those published for
68Ga-labeled PSMA ligands."
Excerpt from the following Heidelberg paper published during March 2019:
ncbi.nlm.nih.gov/pmc/articl...
"Detection Efficacy of 18F-PSMA-1007 PET/CT in 251 Patients with Biochemical Recurrence of Prostate Cancer After Radical Prostatectomy"
And I have run accross a number of other references that shorten the pre-scan ADT period to 2 or even 1 month before imaging.
Thank you! I did not understand that you meant ADT in general and not Bicalutamide only. Here is a study that reports an initial increase in PSMA expression:
ncbi.nlm.nih.gov/pmc/articl...
This one is new and reports an increase using Xtandi:
eurekalert.org/pub_releases...
I think one can assume that Bicalutamide has a similar effect on the PSMA expression like Xtandi/Enzalutamide does.
And a review of many relative papers, if you haven't noticed it:
"Use of gallium-68 prostate-specific membrane antigen positron-emission tomography for detecting lymph node metastases in primary and recurrent prostate cancer and location of recurrence after radical prostatectomy: an overview of the current literature".
Hi TopBanana!
While PSMA "flair" is documented with 2nd line hormone therapy in castrate-resistant men, men who are hormone-sensitive may not demonstrate PSMA increase after ADT initiation. This may be why your doc wanted to hold off on the bicalutamide until after the scan. Below are links to studies demonstrating this. The first study, in particular, compares the immediate effect of ADT+Bicalutamide on PSMA expression in hormone-sensitive verses castrate-resistant men, demonstrating that 62% of the hormone-sensitive men had a decrease in PSMA expression at day 9.
ncbi.nlm.nih.gov/pubmed/305...
ncbi.nlm.nih.gov/pmc/articl...
Ahaa, thank you so much! I’m learning a lot!
Check the second PET scan that they do in Australia before the Lutetium treatment for pondering the existence of bone mets not expressing PSMA.
Second pet scan they do in Australia? Is Lutetium treatment the same as PSMA?
Testosterone feeds the cancer. Not expressing PSA doesn’t mean the cancer is not growing.
Thank you. I understand that part, that PSA is not the whole picture. I guess that is why I’m confused regarding how we will have a overview about my father’s cancer. But blood works makes sense! I guess the doctor is thinking that too just didn’t tell us. But I’m confused regarding the ADT before PSMA. If Bicaluamide makes the PSMA expression bigger then why didn’t the doctor tell us that was one of the reasons, and why did the other doctor say to not do ADT to keep the PSA ”clear”.
I can’t say. I would directly ask them why and see what they say. Let them explain their reasons.
Lutetium as an isotope decays by emitting radioactivity to its immideate surrounding. They use a mediator that transports the isotope to PSMA avid places, malignant or not. They have noticed that in some patients this mechanism brings very good results and to some others just fails. So they hypothesised that cancer tumors are of two broad categories. Those that express PSMA and those that do not and escape from the isotope bonding. Consequently, and in order to up the succes rate, in Australia, they do a second PET scan to check for the existence of the latter.
Ahh thank you! My father got a NaF-PET, perhaps that was the same..
Hystoligy of cancer?....ductal as is mine and a few others her does not express a high psa....mine 12 at dx and g9 w/ mets...
I’m confused! Should my father get a Hystoligy-test..?
Ahh now I understand. g9!
When men have low PSA sub-types, a PSMA scan may still show cancer.
Thank you very much, do you have any article I could show my father’s doctor? Or if you know a name, I can google. This really disturbs me that my father’s doctor does not seem to think we need PSMA if the PSA if low, if it is very different for my father’s low PSA showing-cancer.
(Also: How often should we check PSMA approximately?)
80% of GS9 patients had a positive PET (Figure 2). Other risk factors were PSADT≤10 months, T3N0, and ongoing ADT (ADT temporarily increases PSMA detection rates)
Also worth noting that a third of those with PSA< 0.2 had positive PSMA scans.
ro-journal.biomedcentral.co...
He is right that detection increases with PSA, but that is not the only variable.
Thank you! Bedtime reading.
Re Firmagon, I found this paper comprising a very small number of cases and a low dose. I think your father has taken a much higher dose. No?
scielo.br/scielo.php?script...
Also, tests on mice with enzalutamide and bicalutamide.
escholarship.org/content/qt...
Thank you!! Bedtime reading nr 3.
I am receiving treatment by a team, multidisciplinary, at a research medical center, U of KY Markey Cancer Center. I am reading and trying, humbly, to learn. Thank you, everyone. For giant helpful information. I had brachytherapy in October 2019, and so-far, few side effects, Due to my neurological disorders (Myasthenia gravis, Multiple Sclerosis) they assessed brachytherapy was the most amenable option for quality of issues. I hope they were right. I will ask these questions, also. They seem to be very open to any enthusiasm for my care, including self care. I went in with a Gleeson 9, ( I am 60 years old since July 5 2020.) Now, 10-months later, I should maybe request these status tests and labs> Thanks...r-
I was also a gleason 9 yet my PSA when diagnosed with 13.5
I was told this is common with those of us that have a more aggressive cancer
A biopsy would indicate this
My PSA gradually came down not by leaps and bounds
1st infusion Docatexal my PSA CAME DOWN TO 8.88
2ND 5 .57
3RD 3.56
4TH 2.56
5TH 2.32
6TH AND FINAL INFUSION 1.54That was 1 month ago
Starting targeted radio therapy to the prostrate in 1 week
5days a week Monday to friday for 1 month
I am also on a hormone suppressant called Decapeptyl intramuscular injection every 3 month
My doctor never seemed very concerned with my PSA
Thank you very much for sharing. Do you know that your doctor focused on instead of PSA?
He spent alot of time focusing on my blood samples and what they said despite PSA dropping
Our monthly consultations where mostly to ask me what I was experiencing and encouraging me to stay focused that evidence points to a good response
He was correct
Hi,
The PSMA scan attaches the radioactive isotope Ga68 to the Prostate Specific Membrane Antigen, hence the abbreviation PSMA. If there's little or no PSA detected then probably there are no active prostate cells, cancer or otherwise. I too am confused that your Dad has been diagnosed with Gleeson 9 stage prostate cancer but he has no PSA, so I wondered if he is taking a medication that is suppressing the production of PSA such as an anti-androgen like Bicalutamide. I have prostate cancer which reached Gleeson 9 and I had it removed along with 21 lymph nodes, but still have prostate cancer that has been trapped in 2 other lymph nodes, so I am taking Bicalutamide that has stabilised my PSA at 0.3 ng/ml.
Her father had RP too, a couple of years ago.
Yes he had RP in 2017, so no prostate left!
The hystology is defined in the pathology report from the biopsy....it is the pattern of the cancer asit appears under magnification...gl>8 have a denser/tighter appearence
Without any scan and without a high enough Psa, we must assume docs found Gleason 9 from biopsy results. That's what happened to me in 2009, and when docs opened me in 2010 to remove PG they could not continue because of too much Pca adhering to outside of PG. I had a real bad case of Pca, but they had no idea what mets I had until 2016, when I got my first PsMa scan with Psa at 6, and they only found 2 small 2mm dia mets in lymph nodes in upper thorax. But I bet there may have been hundreds more more mets which were too small for any scans to to see.
But I was told PsMa scan shows PG and met status about 2 years before any CT scan.
My CT scans I had before 2016 showed no spread.
Since 2016, I have had 7 PsMa scans to show what is possible treatment and with a Psa well above 0.2, but below 50, and the scans showed progression of mets in lymph nodes and bones, even though I was on ADT and on Cosadex and Zytiga and chemo. All those things simply kicked the can further down the road, which got messier as we went along.
Only Lu177 was able to kill many Pca cells.
Now it is unknown how well Lu177 can attack very small mets wherever they are, and its obvious to me now after having 4 shots of Lu177 that Lu177 may have little effect on microscopic mets which cannot be seen in any scans. These tiny mets have grown larger, pushing up my Psa to 20, and now are visible in PsMa scans, so I am having more Lu177 which is expected to kill many of the Pca mets now seen, but probably not all of them, so in 18 months I may need another lot of Lu177.
Now there is a limit to how much Lu177 I can have because it has an accumulated effect on bone marrow and other places and side effects begin to be so bad that Lu177 can't be given. So what do I get after Lu177 cannot keep Pca down? Do I head for my workshop and make a coffin for myself? What will available treatment be in 2 year's time?
The chief doc at Theranostics Australia said that in Germany, one man had 10 shots of Lu177, the highest number known. The size of the dose given may also affect how many shots are given; my feeling is that many small doses are better than a few big ones. In beam radiation, they gave me 35 shots of EBRT for a total of 70 Grey to PG, so 2 Grey per day.
The only reason to give bigger doses per day is to allow ppl to spend less time getting treated, and get more patients done for the same cost with same total amount of Grey, and make more profits. Side effects could be more severe.
Docs have said I may need to have some Ac225 with Lu177 to more effectively zap small Pca mets. But Ac225 causes worse side effects of dry mouth and dry eyes.
I seem to have recovered well from slight dry mouth after 4 shots of Lu177.
But having more Lu177, or with added Ac225 will make side effects worse, and I may be left with dry mouth and eyes for rest of life and dependent on eye lubricants and false saliva.
So slowly but surely, the drugs to fix us chisel away at out QOL.
There may be some new therapies which become available for me in the next 2 years but I don't have much hope about that; all the possible experimental therapies we hear about often take 5 years+ before becoming available because trials have shown they work OK enough.
There are no known cures for Pca, and for me its been a chronic condition needing one treatment after the other to lengthen my life, and I am happy such treatments exist. The alternative to treatments was to die back in 2012.
Patrick Turner.
Thank you very much for sharing!! And I wish you the best of results with potentially additional Lu177 (or Lu177+Ac255) Have you been getting treatment in Germany?
If you want to share, do you know that treatments are on their way in 2 years?
Best, Hanna
He was treated in Australia where he lives.
I live in Canberra, Australia, and got Lu177 in Sydney, 300km away.
I don't know what effective treatments will become available in next 2 years.
There are trials here going on all the time, some with Lu177 plus other chemicals or with immune Ketruda treatment. The researchers try may things, but often find they don't work at all, or not well enough for a large enough % of trial patients and if they cannot find out why, then that possible therapy is not pursued.
Patrick Turner.
As per TA above. My recurrent positive PET PSMA in 2017 occurred with a PSA of 0,3 ng/ml; GL 9, pT3bN0M0. Use of F18 or Ga68 labelled PSMA both valid; devotees for either. With his history of low PSA levels (like me) I would explore with PET scan earlier (NOW) rather than later as it gives more options for treatment (lutetium etc). .
PSMA and PSA are not the same. My husband has very low, almost undetectable psa, but his prostate cancer is highly psma avid. We have doctors at Cleveland Clinic, Mayo Clinic, and MD Anderson who all agree that the aggressive, low psa cancers are often highly psma avid. My husband was a gleason 9 with a 1.25 psa at diagnosis. Biopsy showed NOT neuroendocrine. Bone mets also not neuroendocrine.
Because the low psa producing cancers are often poorly differentiated, they tend to be more aggressive. On the positive side, these often produce high levels of psma....we actually went back and re-tested the tumor for psma expression. Thus, we have been getting the psma scans and have been able to find the limited bone metastasis which were not able to be found on the CTs or bone scans.
The doctors we see, as well as two in Germany, are very encouraged by the psma targeted therapies for these types of cancers. Here in the States, there are some trials for castrate resistant men for LU-177 and other psma targeted therapies, but in Europe and Australia, they are doing earlier intervention in hormone sensitive guys with psma avid, low psa disease.
Because of my husband's young age, non symptomatic aggressive disease, we were fortunate enough to get in with some of the top doctors in the States. He is a good test subject since he has no other medical issues! Anyways, we talk ALOT about psa and psma, and they all seem frustrated about the confusion (even among other medical professionals) on this topic. While these message boards are SO incredibly helpful, I have found that it is good to do my own research rather than just follow the crowd.
Here is a link from the NIH that talks a bit about the difference between psa and psma:
pubmed.ncbi.nlm.nih.gov/754....
Side note: Husband diagnosed January 2018, gleason 9, psa 1.25. Surgery, 6 month hormone deprivation + radiation. Oligometastatic cyber knife and cryo therapy.
Currently on no medication or treatment. Has felt great throughout and missed little work (10 days post op in 2018, and then a few days here and there when we travel).
Best of luck!
PSMA and PSA differences. There is a good summary chart on page 3 of this article. Men with low psa values also have high psma levels, which is challenging but can also open some treatment options that target psma.
PSMA PET Showing No PSMA Avid Metastases Again 
Persistent psa
PSMA scan results 
Delayed Lu psma treatment and rising psa
clear PSMA scan but PSA still rising 
