Metastasis with undetectable PSA

[Jmr11820]

Is it possible to have metastatic PC with an undetectable PSA? I’ve had persistent lower hip/back pain for a month or so, especially when I do something like a sit up. Thankfully my last PSA In late November was a perfect 0.00, but my high risk DECIPHER spooks me when it comes to metastasis. So, thought I’d ask this group even though I think it’s unlikely that my PC is the culprit. Thanks in advance.

[LearnAll]

Any type of PCa symptoms are almost impossible with PSA of Zero...According to famous Oncologist Dr Mark Sholtz.There are all kinds of aches and pains men have and may think these are related to prostate Cancer. But, 99.9 % chance is these are not due to PCa.

If you really want to be sure...I will ask you to get two tests done:

(1) Bone Specific Alkaline Phosphatse...A test which tells us how much bone repair is going on in your body. Indirectly, it means how much bone damage is there. (No damage..no need for repair.

(2) Urinary Collagen Telopeptide NTX test: This test tells about how much bone erosion/resorption is happening in your body.

If both of these blood and urine tests are in normal range and you have zero PSA,,,YOU DO NOT HAVE ACTIVE BONE METS. I just did these two tests myself before MRI . Both were in normal range and then, MRI came clear.

[Jmr11820 in reply to LearnAll]

Appreciate the response. What prompted you to get the tests if I may ask?

[LearnAll in reply to Jmr11820]

I was going to get PSMA Pet CT but could not travel due to Covid19 situation. Next best thing to make sure that there are no active mets, I went thru these one blood and other Urine test. These two tests are great and the values increase above normal range if you are having active bone mets. If in normal range ..so much peace of mind. I just did these tests to get that peace of mind.

[Jmr11820 in reply to LearnAll]

Thanks

[dhccpa in reply to LearnAll]

You pay for them? Or your doc orders the tests?

[LearnAll in reply to dhccpa]

Insurance does not like doctors ordering some sophisticated biomarker tests and therefore, doctors generally avoid ordering them.My Primary doctor did order for me and it went thru. Insurance wants T99 Bone Scan if PSA is rising.

These bone formation and bone resorption bio markers are not easily allowed due to cost factor. They call these tests "speciality Lab tests".

At least, Bone ALP can be done in private labs easily. It cost about 60 to 70 dollars.

[dhccpa in reply to LearnAll]

Thanks

[LearnAll in reply to dhccpa]

If you really want to go in details of thses Bone Turnover Markers to monitor bone mets..Here is a good article:

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

[tango65]

You could consult with orthopedics and see what they think. They may order a MRI of the lumbar spine to see if there are degenerative changes which could explain the pain. You should stop doing sit ups and try to do some exercises for lower back pain.

onhealth.com/content/1/exer...

[Jmr11820 in reply to tango65]

My hunch is arthritis. Thanks for the attachment.

[Tall_Allen]

Yes. There are several types of prostate cancer that do not express PSA. Not a bad idea to have an FDG PET scan which can detect those types.

[Jmr11820 in reply to Tall_Allen]

Do you know what types of prostate cancer those are? Would that particular type of PC be noted in my biopsy or decipher genomic test?

[Hotrod65 in reply to Jmr11820]

Neuroendocrine differentiation is one of them which I have.. considered the most lethal form of this disease..going on 7 yrs since diagnosis.

[Jmr11820 in reply to Tall_Allen]

My Cancer does express PSA. It was 6.59 when diagnosed, so based on that wouldn’t I be able to rule out it being a tumor that does not express PSA as you suggest? What do you think.

[Tall_Allen in reply to Jmr11820]

The type of prostate cancer in your prostate may bear little genomic relation to prostate cancer in any metastases you may or may not have (other than point of origin). Your high Decipher score of prostate tumors shows a high propensity towards genomic breakdown. As a group, the "anaplastic" prostate cancers express little or no PSA. Neuroendocrine, for example, does not express PSA, but nor does the type called "double negative" (no AR and not neuroendocrine). There are other rare phenotypes that express zero or little PSA, like PC sarcomas, PEC-ome, and some squamous cell PC. All of these are extremely rare,

[Jmr11820 in reply to Tall_Allen]

I appreciate your response. I guess what I’m struggling with understanding in terms of having metastases that would cause bone pain is my PSA was 0.00 on 11/23, and this back pain issue started late December, just a few weeks later. You’re saying that it’s possible that a PSA of 0.00 might be irrelevant and to have metastatic bone pain a month later after that undetectable PSAwould be possible? That correct?

[Tall_Allen in reply to Jmr11820]

I'm saying it's not likely, but it is possible.

[Jmr11820 in reply to Tall_Allen]

Thanks again.

[LearnAll in reply to Jmr11820]

See and note .. the key word here is "Extremely Rare."

[Jmr11820 in reply to LearnAll]

I just sent a post to Anomolous below with a summary history. All these posts make sense. I guess my question is not only, given my timeline and history, could the disease have become metastatic not only to the point where a scan or blood test could confirm it, but to the point where I’d have pain symptoms.

[Jmr11820 in reply to LearnAll]

Thank you. Seem the answer is it’s possible but unlikely. It concerns me, but if my disease has metastasized, I can’t imagine it would be symptomatic at this point with my history and timeline I laid out in another post. Really appreciate all the different posts and input here.

[LearnAll]

92% of prostate cancers produce good amount of PSA. Remaining 8% also produce PSA but in smaller quantity. These low PSA producing PCa's are small cell ductal, Neuro Endocrine variants which by nature are aggressive.THERE IS NO ALIVE PROSTATE CANCER CELL WHICH SECRETES ZERO PSA.

[Jmr11820 in reply to LearnAll]

Mine is a luminal adenocarcinoma, so none of those thankfully. Thanks again for your response. Good luck to you.

[Rwrpc in reply to LearnAll]

I’m 5 weeks post RRP and had blood work done today. Hope for nonexistent PSA levels but with all I’ve read anything can happen with PC.

[nobaday]

I have bone Mets at C3 and mid back T9 to T12 that appear to be active. Lit up on PSMA PET and CT / MRI . Latest PSA 0.02.

PSA at duagnosis Nov 2017 72. NegTive for neoendochrine as per chtomGranin A.

[Hidden in reply to nobaday]

Did you have alkaline phosphate lab work done? If so what did it read?

[Jmr11820 in reply to Hidden]

No. Diagnosed in August 2019, 6.59. psa. Had prostatectomy in October, Psa was .01 after surgery then .03 six months after surgery. Had RT at that point because of high risk DECIPHER. PSA dropped back to .01 three months after RT and then dropped again to.00 at six months after RT. Giving you a history and timeline because I don’t think my urologist ever though it was necessary nor did I. After surgery was 4+3 tertiary 5, positive margin, EPE.

[Hidden in reply to Jmr11820]

Right. I meant to be asking nobaday that question, sorry

[nobaday in reply to Hidden]

Hi Anomolous

At diagnosis Nov 2017 iAlkaline Phosphotase was 75, June 3019 went over spec at 153, now Jan 2020 it is 220. I read into this as being consistent with increased bone Mets growth. My oncologist did not seem concerned that it’s just over spec now. My scans show increase in net growth but just at same spots identified at diagnosis. As I said I have basically zero pain by taking Indomethicin, a non steroidal anti inflammatory 50mg 2xdaily. I would jump on Lu 177/ Ac225 if available in North America.

[Hidden in reply to nobaday]

Hopefully it will be soon.

[pbaldwin]

Yes it could be like me...just arthritis. I use a heating pad and the aches is not so much.

[Jmr11820 in reply to pbaldwin]

Thank you.

[Hidden]

Yes it is possible. Please read Tall_Allen's responses, they are factual.

[Jmr11820 in reply to Hidden]

Thank you.

[Fanger1]

I've had undetectable PSA with ongoing low back pain since RP for two years. After multiple imaging studies including MRIs, Bone Scans, CTs, Ga-PSMA Pet/CT the radiologist discovered an Annular Tear of my L5-S1 disk. This was most evident on the T2 weighted MRI. Another imaging study called a Provocative Discogram showed both L5-S1 and L4-L5 have Toxic Annular tears. Insidentally, a Dexa Bone scan reveled I also have Osteoporosis. Due to high bone turnover my CDX (C-telepeptide) was elevated as well. I started on Prolia and after a few months the CDX has come down to normal levels. My pain is from Degenerative Disk Disease.

[Jmr11820 in reply to Fanger1]

Thanks

[Fanger1 in reply to Jmr11820]

You might ask your MO to order a lumbar MRI, Dexa Scan in addition to the Bone Alk Phos and CDX. Best of luck with your case🖖

[j-o-h-n]

BTW How old are you?

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/17/2021 2:18 PM EST

[billfenley2]

Jmr, without, I hope, sounding flippant, I'd like, in a word, to recommend: stretching.

[MateoBeach]

Suggest you go straight to an LS MRI and actually see what is going on. And will exclude metastasis as a cause if that is so.

[Papillon2]

👍