At the time of his diagnosis there were some neuroendocrine markers present (chromogranin and synaptophysin) but very few in comparison to the prostate cancer cells. He felt a lymph node on the side of his neck swell a little when we went for his check-up in February but the CNP was not concerned and his numbers were stable. Now the lymph node on the side of his neck is very swollen (visibly the size of a golf ball) his PSA doubled since last appointment and his Alk Phos went from normal 87 to 135H.
Nikki - a couple things jumped out at me so I'm just going to throw them out here without composition or reinforcement. I know very little about
NET PCa, but I did have a crash course in neuroendocrine cancer this past fall when a mass very suspicious of GEP-NET was found on a CT. Be aware that it is possible to have two cancers. You and your husband have been preoccupied with the PCa, and as serious as that is, I'm wondering if his care team has considered the possibility of something other
than metastases from his PCa.
CgA can appear elevated from other causes (mine was 506, normal is around 30) and both NHL or lymphoma as well as neuroendocrine cancer cannot be ruled out without a primary tissue sample. We live Tampa and both my wife and I simultaneously went thru "oncology wars" wherein certain specialists did not want other specialists (endocrinologists and hematologists) trespassing on their territory, treating their patient. For us it was neurologists and gastroenterologists who wanted to call the shots.
Just wondering how "diverse" your treatment team is? If it were something out of their realm, would they know how to look for it?
2014-15: PSA's 9, 12, 20, 25, Neg DRE's, false neg TRUS biopsy
6/16: New Uro, MRI Fusion biopsy, 6+Gr4 Rt Base (2x40%+2x100) G8(4+4)
8/16: DaVinci RP, 3 foci EPE, PNI, 11 LN-, 53g, 25%, BL SVI, pT3b
1/17: Started Lupron ADT, PSA's ~.03
5/17: AMS800 implant, revised 6/17
8/17: 39 tx RapidArc IMRT (70 Gy)
1/18, 4/18, 7/18, 1/19: PSA's <0.008, T=9
2018: Dx Radiation Colitis & other weird stuff