Neuroendocrine cancer % in APC patients is not rare, it’s becoming common.

[GeorgeGlass]

How do we help men, on this site, to reduce their chances of getting NEPC? I did a PSMA PET scan today. My blood tests looked pretty normal with psa at .5 and other tested looking like they usually do, except for blood glucose, which is normally in the 93-99 range for the past five years, but was 76 in this week’s test. This is concerning because fluctuating blood glucose is something that is sometimes seen in men with NEPC.

My spine has been very sensitive , as if the nervous system is very active, which is often how NEPC moves throughout your body.

We’ll see what the scans show. I’ll ask the doctor which other tests he thinks were should conduct.

From Healthline article:

healthline.com/health/prost...

“Cancers that continue to grow even when androgen levels are reduced are called castrate-resistant prostate cancers. As many as 17–40% of people with castrate-resistant prostate cancer develop neuroendocrine tumors.

NEPC rates may be increasing due to the widespread use of a class of hormone therapy medications called androgen receptor pathway inhibitors. These medications keep androgens from binding to androgen receptors on prostate cancer cells.

They include:

abiraterone (Zytiga)

enzalutamide (Xtandi)

apalutamide (Erleada)

25% of advanced prostate cancer deaths are due to NEPC.

According to Neuroendocrine Cancer UK, symptoms of NEPC can include:

frequent urination

weak urine flow

frequent urination at night

new erectile dysfunction

blood in urine

pain when sitting

blood in semen

pain during urination

Later signs and symptoms may include:

fatigue

changes in bowel habits

unexplained weight loss

swelling or fluid in your legs

pain in your back, hip, or thigh”

[GP24]

I think your doctor will order a blood test for CGA and NSE. However, these are insufficient to determine neuroendocrine PCa, you need a biopsy for that.

The symptoms in the list are unspecific and I would not use these to determine neuroendocrine PCa. They can have lots of different causes.

[KocoPr in reply to GP24]

What is CGA and NSE?

[GP24 in reply to KocoPr]

They are biomarkers determined with a blood test.

[KocoPr in reply to GP24]

I guess i was asking for the name of them so i can search for more info. I am not familiar with the acronyms

[GP24 in reply to KocoPr]

Chromogranin A (CgA)

Neuron Specific Enolase (NSE)

[GeorgeGlass in reply to GP24]

I just read the results from the scan. It’s not nepc. Its a spread of the cancer to other areas in the perineum, iliac, and tube connecting the kidney to the bladder. Small spots but bigger than two years ago, and slightly more widespread.

[cesanon]

Exactly how frequent is it. It would make sense that as we get good at killing other types of prostate cancer, that is should generate adaptations like this

[GP24 in reply to cesanon]

GeorgGlass wrote: "As many as 17–40% of people with castrate-resistant prostate cancer develop neuroendocrine tumors." There is no good therapy against neuroendocrine tumors. Typically a chemo with carboplatin is used. Or Everolimus which has bad side effects. Other therapies are in research, a few in trials.

[6357axbz]

Thanks George

[Derf4223]

Maybe a serial liquid biopsy? That is said to catch circulating PCa genetically.

[GeorgeGlass in reply to Derf4223]

They found cancer yesterday. Now it’sa matter of deciding what treatment to use against it.

[Cyclingrealtor in reply to Derf4223]

I have a research doc at UC Davis who has shared that advancing/ mutated disease at low psa levels are an issue. He said that many times they will see circulating tumor DNA mutations on a blood biopsy before any psa rise up to several months before a change in PSA.

[jersy]

aren't those the same symptoms as 'regular' prostate cancer?

[GeorgeGlass in reply to jersy]

I don’t know for sure. I don’t think glucose changes of 25% are standard for apc. I have no idea why it dropped so much. I still believe it’s due to the cancer but I can’t prove it. The doctor said he didn’t know. I’ve done at least 15-20 blood glucose tests that last 5-6 years and i don’t think any of them were below 92.