Dx 10 years ago, had surgery and radiation therapy. Path report showed Pt3b, SVI, gleason 8 with tertiary 5. Psa recurrence 5.5 years ago, treated with only Casodex since then. PSMA pet scans at time of recurrence and 2 years ago showed no mets. PSA was below 0.3 since recurrence. Recent PSA 0.033 with Casodex 50 mg/day.
I’m so grateful that my disease is controlled by medication with relatively lesser side effects. My question is how am I going to know if cancer progresses before it’s too late. So I want to know if my knowledge is correct or not. Appreciate your comments:
My PSA is under control with hormone therapy (casodex), PSA is low and stable. I guess there are two probabilities:
1) Cancer is still hormone sensitive and under control
2) Cancer has evolved into NEPC or any other tumor that does not produce much PSA. Cancer is progressing but there are no symptoms yet
How do I know that I’m safe and first probability is valid?
What scans and blood tests (other than PSA and testosterone) can I get to rule out the NEPC?
many thanks
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traveller64
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I will also do Chromogranin A , a test for checking Neuro-endocrine change, if any. This blood test is abnormal in about 60% patients. if neuroendocrine type present. If it comes high, we might have to consider other tests.
I will also check LDH which comes high in Neuro-endocrine situation. It gives a clue.
SCANS :a whole body MRI to rule out bone and visceral mets,if any.
Thank you. So MRI would show any kind of tumor, right? I guess it will catch tumors larger than 0.5 cm. Which one is better; whole body MRI or FDG PET/CT?
Scans are about your only defense against NEPCa. I developed it with PSA <0.01, ALP <60, and Chromagranin A at the upper end of the normal range.
That said, don't get paranoid about it. I'll be getting scans every three months or so to check for recurrence, but not sure I'd recommend that for everybody. You've already lived 10 years since your original diagnosis, so that would be 40 CT scans which is a lot of radiation, and certainly a lot of yucky barium drink.
I will be satisfied with MRI only just to screen for visceral/bone mets. Just for peace of mind.
The problem with super sensitive scans such as FDG or Ga68 is that they might show very very small bunch of cancer cells which really are not relevant as you might run the risk of unnecessary,over-treatment. We need to balance risk-benefit of having such scans.
Yes. NEPC is rare, increases in heavily treated men, and there is no reason to even suspect it for you. You are lucky that your cancer responds well to minimal ADT, and you have no apparent occult metastases.
In heavily treated men for many many years, approximately 20% people might get neuro-endocrine differentiation. Even among these men, the degree and extent of NE differentiation varies. Some are mild and some not so mild.
Only 0.8 % of all Adenocarcinomas start with Neuro-Endocrine subtype...This is how rare it is .
To clarify my earlier response, both my oncologist and my urologist believe I've had some NEPCa all along, which happens about 1% of the time, as my original cancer never quite acted like normal prostate cancer.
As far as I know, NEPC is very rare with an undetectable PSA. I mentioned NEPC it to my doctor and he said it would be highly unlikely since my PSA is undetectable too. But I guess is does happen rarely. Did you also have soft tissue mets?
Yes, new mets in my bladder and liver that weren't there at my original diagnosis. Hopefully they'll be gone after chemo. A scan after my second cycle showed significant shrinkage.
My MSK MO echoed the sentiment that NEPca is rare , and he hadn’t ever seen that development, in a patient with an undetectable PSA( which is where I also sit)
Well not a doctor here but my suggestion would be a full blood panel, then a bone scan with contrast. That would be a great start. I lost my father in law to aggressive cancer 6 years after his surgery, doctor didn’t do tests until to late 😢😢
As I read your numbers, you are <0.1; ie, undetectable. Relax and enjoy life and your family. Be watchful and have a PSA and T every 90 days. However, do not fret nor worry. You have embarked on a treatment plan that is working for you. We all have varying scope of disease and works well fir you, doesn’t necessarily work for anyone else; and vice versa.
You might have a discussion with your MO on micro-metastasis.
There are no guaranties. You have had 10 good years. Very lucky. At this time you may be more at risk for a car crash, heart attack or some other way to go. I'm more worried about Covid-19. Relax. L'chaim!
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Do I have neuroendocrine PC?
How high must the PSA levels be before cancer can be seen in a CT scan?
Can prostate cancer metastasis to liver?
PSA Anxiety and Intermittent ADT for Metastatic Prostate Cancer 
Should I have orcyectomy (im sure i spelled that wrong)!
