neuroendocrine tumors: I never had this... - Advanced Prostate...

Advanced Prostate Cancer

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neuroendocrine tumors

StayingOptimistic profile image

I never had this test done before “ Chromogranin A, Serum“. It is 108 and it should be less than 93. I am reading online and it says it’s related to “neuroendocrine tumors”. Is this an indication that I might have neuroendocrine prostate cancer?

Thanks for any insights on this.

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StayingOptimistic profile image
StayingOptimistic
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19 Replies
LearnAll profile image
LearnAll

One reading or 2 readings are not enough to make a trend. You need to keep testing Chromogranin A every 3 months to see if the readings are steadily going up. Also check LDH every 3 months to see if it is going up steadily. Another blood test, serun Neuron specific Enolase (NSE) if high , it indicates likelyhood of Neuro Endocrine trans differentiation.

I know it is hassle to do these tests but thats how you can catch if your cancer is changing into "treatment emergent Neuro-Endocrine type or not.

One other thing...check if your X Rays of bones are showing any LYTIC lesions ?

StayingOptimistic profile image
StayingOptimistic in reply toLearnAll

Thanks, LearnAll for your reply.

I just did an 18 F psma scan and found 6 LN Mets on pelvis & Abdomen. No bone Mets on bone scan or ct scans.

My MO will do a biopsy on the LN. Will the biopsy show of it is neuroendocrine tumors? Or should I keep doing these tests?. I also did this test for the first time (Carcinoembryonic Antigen (CEA)) and it was almost 9 ( range from 0-5).

LearnAll profile image
LearnAll in reply toStayingOptimistic

Biopsy will really help to know more about possible treatment emergent neuro endocrine differentiation. good luck.

SPEEDYX profile image
SPEEDYX

Are you taking any proton pump inhibitors?

StayingOptimistic profile image
StayingOptimistic in reply toSPEEDYX

Not on any medication. The ONLY treatments I had was RP & SRT. never been in anything else since DX 10/2012. never on ADT as of now.

SPEEDYX profile image
SPEEDYX in reply toStayingOptimistic

Reason why I ask is that taking any acid reducing pill such as nexium would have an effect on results.

StayingOptimistic profile image
StayingOptimistic in reply toSPEEDYX

Thank you. I am not taking anything really except IP6 supplement, magnesium and D3

Manilo profile image
Manilo in reply toStayingOptimistic

I believe NEPC comes way after (and not always) beeing on ADT

The Chromogranin A blood level is not specific enough alone to diagnose NEPC.

I would be looking at imaging to see if there are visceral/organ mets, bulky tumors, and lytic bone mets. PSA levels are usually lower in relationship to tumor burden with NEPC. The only sure way to know is with a biopsy.

Tall_Allen profile image
Tall_Allen

No, it isn't. Chromogranin A is just one of several biomarkers. Others include synaptophysin and neuronal-specific enolase. Blood tests are only suggestive. If you want to be sure, you need a biopsy with a histological and IHC analysis.

podsart profile image
podsart in reply toTall_Allen

Sent you a DM

Tall_Allen profile image
Tall_Allen in reply topodsart

I didn't get it- please re-send.

podsart profile image
podsart in reply toTall_Allen

Just resent -- thanks

andrew61 profile image
andrew61 in reply toTall_Allen

Hi Tall-AllenYour blog on neuroendocrine / small cell trials is 4 years old.

Are there any important updates that you can share?

Thanks Andrew

Tall_Allen profile image
Tall_Allen in reply toandrew61

It's current. I update it as more clinical trials open up.

tom67inMA profile image
tom67inMA

In addition to the other comments, note that you can (and I did) have neuroendocrine cancer with chromogranin-a in the normal range and an undetectable PSA. In my experience, a biopsy will confirm neuroendocrine or not, but can't always identify the source of the cancer.

Lagovista2018 profile image
Lagovista2018

Hello, my husband who is 47 was diagnosed in November of 2018 with neuroendocrine prostate cancer. He went through 6 rounds of chemo (carboplatin and etoposide) and 10 rounds of radiation. Today he is doing great he’s on zitiga, he sees his oncologist once a month and is on Xgeva shots every 3 months and his urologist gives him Trelstar every 6 months. He also has to have scans done every 3 months (CT scans of chest, pelvis and abdomen and mri of his brain) we have been so lucky and blessed that no tumors has shown on scans. His oncologist is very impressed with his treatment and blood work. My husband is still active just this past weekend he went campingn on the beach with our youngest son

dasyluo profile image
dasyluo

Great news, give me hope as I have same NEPC diagnosed this April

immunity1 profile image
immunity1

Thats not screamingly high result for CHR A and could be due to your prostate adenocarcinoma. Other comments are relevant.

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