Can some PC’s stop producing PSA?

[User2008]

I just read that PC can stop producing PSA. If this is true, how can we depend on PSA tests regarding the progression or remission of the disease? Do we have to wait until pain alerts us that something more is wrong?

[Tall_Allen]

Yes, several types of PC produce little or no PSA. Fortunately, they are rare - most produce at least some PSA. There are other biomarkers, like bone ALP. But some produce no biomarkers. In that case, only scans can show progression.

Why do you ask? Do you have no PSA with metastatic PC and without ADT?

[User2008 in reply to Tall_Allen]

My husband had a RP in 2011 and his PSA began to rise 4 1/2 years later. He then had External Beam Radiation in late 2015. His PSA became undetectable and has remained so until today. He’s been complaining of intermittent lower back and leg pain for the last 6 months but no PSA increase in the latest test. (30 days ago). I’m worried about the pain he’s experiencing. No ADT yet...

[Tall_Allen in reply to User2008]

It's very common to interpret every back pain as attributable to the cancer - sometimes they are, but usually they aren't. It would be almost unheard of for someone who had a PSA-evident kind of cancer to convert to a non-PSA type after just RP+SRT. Sometimes non-PSA subtypes are detected in men who have been heavily treated with many medicines for years, but not in cases like your husband's.

The first step should be to see an orthopedist who will probably want to see an X-ray. Back pain that radiates down to the leg is usually due to sciatica,

[User2008 in reply to Tall_Allen]

Thank you for your quick reply Tall_Allen. We'll get with an orthopedist. You'll never know how invaluable your advice is to those of us who are trying to help our loved ones on their PC journey. I so appreciate you and all of the posters here who teach us everyday.

[LearnAll]

Yes....With heavy and continuous use of Androgen Deprivation Therapy (Lupron,Eligard, Firmagon, Zytiga , Extandi etc).....Almost 30% regular Adenocarcinomas change into Neuro Endocrine variant which is aggressive and hardly produce any PSA.If you are concerned of this happening, you have 4 blood tests which can clarify if you have neuro endocrine type...These tests are (1) Chromogranin A, (2) Lactate Dehydrogenase (LDH) ,Neuron Specific Enolase ( NSE) and (4) Synaptophysin.

If 2 or more of these tests are abnormal, your chance of having Neuro Endocrine type goes upward of 95%

The biopsy of prostate tissue can confirm fully if NE Cells are seen in large numbers.

The chances of change to NE variant are reduced by doing Intermittent ADT ..but not every man is a suitable candidate for Intermittent ADT.

ncbi.nlm.nih.gov/pmc/articl...

[maley2711 in reply to LearnAll]

so, sometimes, in fact quite often, ADT creates a worse monster than what the ADT is slowing??

[V10fanatic in reply to maley2711]

Ironic, isn't it. "That which doesn't kill me" does not apply to us.

[elvismlv123 in reply to V10fanatic]

he wasnt talking about pca when he said that....however vaccines can against a killer organism like covid 19.

[elvismlv123 in reply to maley2711]

not true....you really need to know that many men are alive today because they were on some form of ADT. Every action has a equal and opposite reaction. There is no magic cure but letting the enemy win without a fight is dereliction of duty.Its not the ADT that kills us its the cancer.MO and RO and RT are far worse.

[maley2711 in reply to elvismlv123]

I did not say what you claim I said...read more carefully?

Also, " MO and RO and RT are far worse. " What do you mean?

[elvismlv123 in reply to maley2711]

can you tell me what you said again so I might understand your reply maybe use different words thank you i might have misspoke

[elvismlv123 in reply to maley2711]

so, sometimes, in fact quite often, ADT creates a worse monster than what the ADT is slowing??

is this it?

[maley2711 in reply to elvismlv123]

yes...bingo. But we apparently have no way of knowing which men this will affect that way.

[elvismlv123 in reply to maley2711]

Are we comparing apples to apples? Understand ADt was for early stage men not ADvanced stage men. Weve known that for a very long time. That is one of the reasons UROs thought it was a waste of time. Dr Huggins failed not knowing that.ADT wasnt there to create a situation worse than the actual disease. Other treatments can and do.Its that ADT isnt a cure but compared to other cancers it might as well be.

[maley2711 in reply to elvismlv123]

Hmmmm...per my understanding ADT is used to knock back T-dependent metastases.....until PCa adapts and ADT no longer effective. Matter of terminology I think....to me any metastases is advanced stage......whether current treatment is ADT or other types of drugs. Not sure when they decide ADT has become totally ineffective and drop it from the patient's regimen? Others here have the answer for that.

[Hidden in reply to LearnAll]

So ....for that subset of people...don’t start? Or is there no way to know which set you are in beforehand?

[LearnAll in reply to Hidden]

I have not come across a research showing a surefire way as to which men will be in 30% who develop treatment emergent Neuroendocrine variant. However, there are clues.If someone's initial prostate biopsy showed more than average NE cells ,,then that man is in higher risk category.

If LDH is tested every 2 or 3 months ..and it showed a consistent rise over period...means high risk.

One other clue is how low the Nadir PSA goes after 9 months of ADT. If Nadir PSA reaches 0.5 or less, then less risk of NE variant.

Behavior of the PCa in first year is very informative. If it behaves well,, ,Good sign. If it behaves in a erratic, pattern and off and on shows "weird" symptoms and activity.. higher risk of NE variant. There is no one thing which can tell with certainty who will be in that 30% bad category.

[Turt713171 in reply to LearnAll]

Your answers are always to the point. Retired educator?

[Turt713171 in reply to LearnAll]

Do you believe androgen suppression and or blocking drugs cause the n e pca?

[LearnAll in reply to Turt713171]

Its not about what my belief is. There are dozens of research papers esp in last 10-12 years which are mentioning the risk of treatment emergent NE variant. A few years ago, when a few studies raised this issue of treatment emergent NE change, there was an uproar in Onco-Industrial Complex and they attacked researchers by saying that ADT does not cause it..it is because men are living longer and therefore this change happens. Then, a few years ago, more research showed that about 10 to 15% have treatment emergent NE variant due to heavy and continuous ADT. Finally, in last 5 years, researchers are saying that the rate of treatment emergent aggressive variants are going up as the SOC is now promoting maximum combined ADT and doling out the hope of a few more months of survival to people.The research paper I have provided above is from MD Anderson Cancer Institutes ,top researchers including well known Oncologist Dr Eleni E. This study says about 20% but another study estimates 30% and rising in heavily treated with continuous ADT.

Note: Some people need continuous strong ADT because they have severe disease.

[Turt713171 in reply to LearnAll]

Dr e went back to Greece Wonder why

[LearnAll in reply to Turt713171]

I was also thinking why she had to go back to Greece. May be powers in MD Anderson wanted her to not spill the beans and tell the World about Neuro-Endocrine conversion due to heavy and prolonged ADT.Academic Centers can be brutal if you do not toe the line. I will stop at that.

[Hidden in reply to LearnAll]

I heard she cried over spilled milk. That's why she left for Greece. A lot of babies from that country.

[elvismlv123 in reply to LearnAll]

is that you patrick?

[elvismlv123 in reply to LearnAll]

no one talks about ploidy analysis at dx.

[Dmwalker]

I had increasing pain and other cancer symptoms with no increase in PSA. Two M O's that I talked to believed that the cause was something else since PSA was low. When I was finally able to get scans we saw that my cancer had metastasized to the bones, the liver, the lungs and other organs. More than a week later I am still waiting on a biopsy to determine which chemo I should begin. In the meantime, I am taking oxycodone for pain. Don't let them tell you PSA is the be-all of diagnosis.

[User2008 in reply to Dmwalker]

Thank you for your helpful response. What scans did you get and which medical professionals should we contact to get the scans ordered? Hubs has a urologist and a radiation oncologist. Shall we also seek out a medical oncologist?

[Dmwalker in reply to User2008]

The scans were standard. A full body bone scan and a CT. Mine were ordered by my MO. I'm not qualified to advise you on what medical personnel you should consult. I have a bit more in my post titled: PSA A cautionary tale.

[kenner in reply to Dmwalker]

Dear Friend,

[kenner in reply to Dmwalker]

Dear friend not one individual is the same. If I had relied on a Prostate Digital exam I would have been dead a long time ago. Normal Digital Exam and a PSA of 39.5, so we never can throw all our eggs in one basket. I sure wish you well.👍

[tom67inMA]

Yes, very true. The best defense would be regular CT scans in my amateur opinion. I didn't get a CT scan for over a year because my PSA was <0.01. I suddenly developed severe abdominal pain, thought I had apendicitis, but a CT scan in the ER showed a large growth in my bladder that was blocking urine flow from a kidney causing kidney stone levels of pain. It had also spread to my liver which was biopsied and confirmed as neuroendocrine likely originating from the prostate. PSA was still <0.01 at the time.

Three different oncologists have told my three different origin stories. 1) It had been the since the beginning, but not enough to be detected by biopsy, 2) it's neuroendocrine cancer of the bladder, based on a history of non-invasive bladder cancer, and 3) it's treatment emergent neuroendocrine prostate cancer.

My original biposy showed the rare intraductal carcinoma which I understand is more likely to switch to neuroendocrine than more common prostate cancers, so once again I'm an oddball in some way.

Even after all that, I'm very glad I didn't worry too much about my cancer progressing in 2019. The latter half was an extremely good time in my life, and based on what we knew at the time the was no good reason to go looking for trouble. Not sure I'd give those good times up for an earlier diagnosis that may or may not have made a significant difference in overall outcome. I'm still here a year after the neuroendocrine diagnosis, and not planning on departing this planet anytime soon.

[LearnAll in reply to tom67inMA]

Tom...Nice to know you are doing fine. Getting CT scan every few months is not easy fpr most men. I suggest an alternative of using serial testing of Lactate Dehydrogenase (LDH) which can give clue if NE variant is happening. Also, Simple X Ray of bones..if shows LYTIC type lesion can make it more likely that NE variant is there.A urine test called, Urinary Collagen telopeptide NTX can also tell us if excessive bone resorption (corrosion) due to lytic lesion is happening.. Of course advanced scan can confirm findings and biopsy can give final answer.

[Jumpingbellybeans in reply to tom67inMA]

Hi Tom, I read you comment and it sounds similar to my symptoms. I am 44 and was diagnosed with advanced PCAR 100%, IDH2 R172, PTEN, MSS, TMB-low, LOH-low. Anedocarcenoma. At the time of diagnosis my PSA was 0.54. I had a mastitis in one spot on my bone and seminal duct.

[maley2711]

Nice that guys here are helping...but none of you Docs is aware of any of what has been mentioned here? specially your MO???

[dhccpa in reply to maley2711]

Funny you should ask...

[MateoBeach]

Agree orthopedic evaluation with standard X-ray is the starting point. As a PC patient cannot make any assumptions about back pain etc until mets are definitely ruled out. I would request an MRI of the back region. The blood tests suggested may be advisable too. If your MO is unfamiliar he/she will need to educate themselves. The article linked by LearnAll above can be printed out, reviewed and given to them.

That said, here’s hoping it is something easily fixable and not cancer related. Knowing that will set you at ease and we will all celebrate your success!

[User2008 in reply to MateoBeach]

Thank you so much, MateoBeach!

[j-o-h-n]

Every tick and tock your sweet husband feels, he will think it's the big C. So do most of us...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/03/2021 5:56 PM EST

[User2008 in reply to j-o-h-n]

So, you understand then... Scary times indeed.

[j-o-h-n]

Yes I most certainly do......ask my wife...........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/03/2021 7:11 PM EST

[elvismlv123]

there are scans and other markers that might alert.i know there is a pap test.its old and not 100% reliable. Check hormones.I am guessing that calcium may rise in the blood for bone lesions..its a guess because it happens in breast cancer.These diseases always leave a trail somewhere before symptoms show up. People forget that PSA is used to determine if a biopsy is warranted.Its 80% effective so it may still be a guess. Then its argue if a treatment changes the overall outcome...It may not.We use it to monitor PCa progression but art some point it may not be directly proportional to the progression of the actual cancer.Some have said PSA cause PCa and others say PSA is meaningless. You could call it a rubber ruler for measuring PCa.My cancer is directly tied to PSA at this point 17 years later as my hormone levels are.My hormones go own an my PSA goes down. low hormones have vastly shrunk my prostate and destroyed my sex function. These drugs work great to interfere with the reproduction system and squirrel the cancer. They get right in there and blaze away at cancer cells. But natural things do as well.There is no difference. Things can stop working but there a vast variety of chemicals out there and only one cancer.Yes they mutate but so do we. Theres more of us than them so who do you think is going to win?We are not without hope.