Posted 10/20/2018 7:33 AM (GMT -7)
Yes, neuroendocrine cancer is essentially incurable, and it can appear in many different areas of the body... but most often in the digestive tract. These would be called GEP-NET, and it does like to metastasize into either the liver or the lungs. But fortunately it is generally slow growing, compared to other systemic cancers... but this is what eventually took the lives of Steve Jobs and Aretha Franklin.
Just when I thought I was through with prostate cancer, as my last three PSA's came back undetectable (though I am still on residual ADT)... Then out of nowhere this suspected neuroendocrine carcinoid tumor showed up in my small bowel a few weeks ago. Surgical removal is scheduled in nine days. It could be carcinoma or it could be benign. The fact that I had been treated for prostate cancer immediately prior to its appearance likely had nothing to do with it.
I've been told over and over that nothing will be known for sure until they actually get in there. I've had lots of tests (was seen at Dr Strosberg's facility and had the dotatate scan mentioned in the link above). Based on my own experience I suggest to you that it is POSSIBLE that your father's NET may be totally unrelated to his PCa.
Unfortunately I've had to get up to speed on this just since August as I have no idea what I will be told after surgery. In either case for your father, if it is advanced prostate cancer OR neuroendocrine cancer of some form, both likely mean an ongoing drug regimen and frequent monitoring for the remainder of his life.
2014-15: PSA's 9,12,20,25, Neg DRE's, false neg TRUS biopsy
6/16: MRI Fusion biopsy, 6+ Rt Base, 2x40%+2x100% G8(4+4)
8/16: DaVinci RP, 3 foci EPE, PNI, 11 LN-, 53g 25%, BL SVI, pT3b
1/17: 18 months Lupron, PSA's ~.03
5/17: AMS800 implant, revised 6/17
8/17: 39 tx RapidArc IMRT (70 Gy)
4/18 Dx Radiation Colitis
8/18 Dx mesenteric mass assumed carcinoid
1/18, 4/18, 7/18: PSA's 0.0, T=9