Neuroendocrine Prostate Cancer

Please help. My father just finished 6 rounds of chemo his scans were great throughout as well as his psa which began to drop. However 2 weeks after he finished chemo he took a ct of his chest (the prior one was only 2 months earlier) and it shows now spots and involvement in the lungs which he didn’t have before. Notning is confirmed yet but since it appeared out of nowhere, so fast and with his relatively low PSA (20) doctor believes it’s a neuroendocrine mutation of PC especially since the fact that he has been on ADT for a very long time. I am so so scared especially since I keep reading it’s very hard to treat and very aggressive... please help any feedback would be really appreciated

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.

Thanks for the bump Logos. Looks like I managed to kill yet another excellent thread. Unfortunately the only way to learn about obscure cancers is if you or someone close is affected by it. What was the name of that other website, you know where our cancer guru went after he left HW? He even knew about lutetium Lu-177 dotatate even before I took the crash course on NET's. Perhaps LuvMyDAD may get more info on that "advanced" prostate cancer message board than from this one.

BTW Saturday November 10th will be The 8th Annual NET Cancer Awareness Day. I would post a link but they may also be trying to raise money as well as awareness, so look it up yourself. It's easy to find... that is, if you've ever even heard of it.