No PSA but have cancer

[lewicki]

What is called when the cancer mutates and does not show a PSA ?

[Psiaki]

There is more than one variety of prostate cancer.

Is yours adenocarcinoma?

Very aggressive adenocarcinoma do not make a lot of PSA.

[lewicki in reply to Psiaki]

Not sure of the type of cancer. Must not be aggressive since I have been fighting it for 24 years. Having some pain in the middle spine and PSA is 0.04. I am going to ask for a Ct scan not a PSMA.

[Blue6199 in reply to lewicki]

You are fortunate. In mot cases, this is considered to be a very aggressive and difficult to treat.

[Hidden]

If the cancer cells do not produce PSA, often neither PSMA or AR, referred to as neuroendocrine.

[Psiaki]

PSA 0.04 - undetectable, you must had treatment for prostate cancer.

Back pain is not related to prostate cancer.

[lewicki in reply to Psiaki]

Four trips to University of Heidelberg. LU-177 plus AC-225

[Hidden in reply to lewicki]

Maybe the researchers in UoH are developping a lutetium variant attatching DLL-3 transmembrane, could you ask them - I guess you have connections?

[lewicki in reply to Hidden]

I am in the process of writing the doctors at U of H Takes awhile for their answer. i will keep a file on this and respond to you when i hear from them.

[Don_1213 in reply to Psiaki]

"Back pain is not related to prostate cancer." Huh? What about when the cancer metastasizes to the spine and starts pinching the spinal cord? I think you might want to rethink that statement just a bit. Back pain is one of the few possible indicators for PCa.

[fmenninger in reply to Don_1213]

Absolutely. having back pain from the spine could be a symptom of pca disease. Needs to be checked to rule it out especially if you are a long time pca warrior.

[Psiaki in reply to fmenninger]

with PSA <0.04. Impossible, there are zillion causes of back pain.

[fmenninger in reply to Psiaki]

not impossible as it’s possible the cancer is not psa avid.

[Psiaki in reply to fmenninger]

agree never say never in medicine, stand corrected

[Gl448 in reply to Psiaki]

I had considerable hip pain from my metastatic PCa. If the mets in my spine and sacrum were larger I imagine they would be very painful. Bone pain is definitely a potential symptom of metastatic PCa.

My PSA never went over 1.1 despite that bone pain.

[timotur]

Several names for it… small-cell, de-novo neuroendocrine, and treatment-emergent neuroendocrine.

[KocoPr]

if it’s neuroendocrine I believe it is treated same as Small Cell Lung Cancer. I remember reading recently that there are new emerging treatments for it.

[lewicki in reply to KocoPr]

Thats interesting. Than if treated differently than is there a cure?

[Hidden in reply to lewicki]

Neuroendocrine cells NEPC and T-NEPC express DLL-3 (Notch ligand), no PSMA.

The researchers are trying to connect lu177 to the monoclonal antibody SC16 via DPTA as a chelator. If they succeed and I d’ont see any reason for not doing so, PC patients have a new weapon. No other cells in the body express DLL-3, the side effects should not be too bad.

The preclinical results are extremely good, all mice with the intermediate dose had complete response - I have never seen anything like this regardless of therapy.

20 to 25% of PC patients will evt. have T-NEPC.

pubmed.ncbi.nlm.nih.gov/357...

Complete response

[TeleGuy in reply to lewicki]

There are also bi-specific antibody (BiTE) treatments that are in trials, including AMG-757 and Harpoon HPN-328. Instead of taking radiation to the cells the antibodies attract T-cells to eat the cells.

[tango65]

There is not a cure for metastatic PC. You should request a MRI of the spine to rule out degenerative processes which are one of the most frequent causes of back pain. It could also identify mets in the spine if there were any.

[Blue6199]

When it starts out (before mutations) as no PSA cancer, it can be called intraductal.

[SimplyT]

I developed a bladder tumor or one existed while on Lupron and Zytiga with a PSA of .01. The tumor was removed via scope . My tissue sample was sent for testing and was described as Aggressive Variant Prostate with NEPC characteristics due to PTEN loss, RB1 and TP 53. This is not what you want to see on a report, but my cancer is still considered high grade Adenocarcinoma per biopsy and IHC. I’m told I have a mixed bag of goodies. I became resistant to Zytiga after 13 months.

Currently in the Duke CHAMP trial designed for these type of cancers. Treatment consists of 2 chemos , Jetvana and Carboplatin, given with 2 immunos, Nivi and Ipi via IV simultaneously every 3 weeks with Ipi being given every other treatment . I just took my 3rd infusion yesterday and am tolerating and responding well to the treatments judging by my PSA. However, the past has told me that PSA is not the only criteria to consider with my situation, so I am cautiously optimistic. This disease is so different with every patient. I was diagnosed at 52 and currently 56 and feel like I’ve been thru the bag of tricks already. I’m hopeful for the future and hope LU 177 treatments evolve as described above to address these aggressive types of prostate cancers. My thoughts and prayers go out to you and all of us and our families and friends that have to deal with this unfortunate disease.

God bless,

T

[lewicki in reply to SimplyT]

Thanks men. I am to get a PSMA pet scan. Does it work on cancer that is not PSA avid?

[Chris52981]

right does all prostate cancer express PSMA?

What is the point of PSMA scan exactly- if it doesn't express PSMA does it mean you have prostate cancer still?

[lewicki in reply to Chris52981]

My same thoughts. Asked urologist and he said no. Need new urologist?