CGA alone cannot determine neuroendocrine cancer. At least you should check NSE as well. If both are too high, you will need a biopsy to confirm neuroendocrine cancer.
1) I know that there are alarmists on this site who learned about rare neuroendocrine PC and warn everybody about it. There are worse things. One deals with it if one has to. Anxiety about rare possibilities doesn't do anyone any favors.
2) What is the trial? Just ADT - how is that a trial? That is SOC.
Thanks, TA. There is a randomized trial going on at MSK that has 3 arms( one arm is only ADT) , the other two arms are ADT+ other ADT2 drugs. I was randomized to ONLY ADT. My only concern is that I don’t want to make the wrong decision like I did for the last two years trying to find the cancer and delay the start of ADT. if there is no actionable treatments about neuroendocrine PC for me at this time, then I am good with it. I waited 2 years looking for oligometastatic disease and I found the Mets, what did I do with the results, NOTHING. it was just a total waste and had to start ADT anyways. I don’t want to spend another 2 years looking for something else which will not serve me any better, that is really my only concern. Thanks again.
Gotcha. We don't have a lot of data on recurrent mHSPC (it's almost all on newly-diagnosed mHSPC). There was a trial of short-term Zytiga in recurrent men who were not yet detectably metastatic (on a bone scan/CT) that showed a benefit, so I would guess there would be a benefit for you as well:
So, just to understand, this neuroendocrine PC does not have its own treatments except may be a more potent ADT drugs? When I was randomized to ONLY ADT, my MO says we can always use the other drugs in the course of my journey and these drugs have side effects. I guess may be I should not worry about it and let things take it’s course?
I don't see why you'd be worried about neuroendocrine PC- why not other anaplastic subtypes? Why not sarcomas? Why not signet ring cell? Why not squamous? Or half a dozen other rare subtypes? There are different kinds of treatments, like carboplatin or etoposide for neuroendocrine, but they are very toxic - I'm not understanding why you are worried about it, and what you think you would do now.
I never heard of these types and know nothing about it. All these worries just started when I got my chromogranin A test( which I never heard about it either before) and started reading about it on the site and got nervous. I am going to forget it about it unless my MO suggests otherwise. You told me I am in good hands with my MO. Thanks again, TA.
1) Your numbers are not indicative of NEPCa. They're small variations within the normal range. I have NEPCa and can safely say if you have it, you'll know something is wrong sooner or later. It is rare and hard to detect with blood tests. My advice is to enjoy life and maybe get an occasional CT scan, you'll make yourself miserable if you try to protect yourself against NEPCa.
2) NEPCa requires an entirely different treatment approach, and is more similar to small cell lung cancer than prostate cancer. I'm currently on Folfiri chemotherapy, which is normally used for colon cancer.
Thanks, Tom. When I got the first readings of my CEA and Chromogranin A, my MO told me to get my colonoscopy earlier than planned. Thank God, it was OK.The question is, will my MO know if I have it or going to have it without me trying to ask him to look for it? He is one of the top MO in the country.
Unfortunately NEPCa is one of those cancers that's difficult to detect early IMHO. My first sign was painful urination for a few months before a CT scan showed what was probably a golf ball sized tumor in my bladder. My blood test were all normal except maybe a slight elevation in LDH at the time of diagnosis. More annoying, a cystoscopy didn't see that large tumor in my bladder.
It is a rare cancer, so try not to worry too much about something that's unlikely and you have little control over.
Strange to be in an unblinded trial in the ADT arm when they are trying to prove that adding the other drugs improves PFS or OS. That looks like you are the sacrificial lamb for the treatments to be compared to. Not a comfortable position is it?I would explore if there is any evidence at all that a more aggressive treatment regimen such as adding an advanced AR drug would be beneficial. If it appears likely then I personally would consider dropping out of that trial and request that treatment. It’s a tough decision. Only if they are going to do early data analysis and cross your arm over into a more active treatment at the first indication, would it be reasonable and ethical. Cannot wait for half your arm cohort to die etc. just to demonstrate the difference. Very personal decision because controlled clinical trials are also of paramount importance. But so is your life.
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Wait and see where the horse is headed
Improved chances of success with ADT?
Does testosterone fluctuate after ADT ends?
Thinking of taking an ADT vacation 
