I’ve been in my journey since 6/17 and all was seemingly well until problems passing urine developed in Feb 19.
I had MRI that showed significant increase in prostate size but PSA and mets in bones remained stable. Additional biopsy done and neuendrocrine diagnosed in the prostate.
Has anyone out there been in this situation where the “normal” disease is stable but the mutation is active in the prostate (no evidence anywhere else). If so, what treatment path are you following, looking for anyone’s stories of how they dealt with the curve ball.
Regards
Slate52
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Slate52
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In the UK you might possibly find some advice or leads about possible Trials/Treatments information from the Researchers/Locations listed at these UK Clinical Trials related to prostate cancers with genetic mutations.
You are right that it is very unusual to find NE disease in the prostate but not in metastases. It is always the other way around. Are you sure it wasn't PNI? It's unusual enough that I think you should get a second opinion. If confirmed, consider a prostatectomy.
Asked the questions and it’s definitely NE, removal of prostate is an option however stated I may lose my bladder and rectum in the process due to tumour size
Hi slate52 my husband was diagnosed with stage 4 with Mets and neuroendocrine differentiations. Prior to this he did have trouble passing urine due to he had a mass near his bladder to prostate. His urologist removed it and he was able to urinate with no issues. His PSA is good however since he has the neuroendocrine differentiations is the type of cancer according to his oncologist both here in San Antonio and MD Anderson. They are treating this a lot like small cell lung cancer. He’s about to finish his chemo and next step is radiation on the prostate as well as immunotherapy. He’s also on casodex daily and Trelstar hormone injections every six months
I am UK based and my father is being treated at the marsden. He was diagnosed in September 2014 with Gleason 9 (5+4).
Late last year he started having difficulty passing urine so he had a TURBT. They examined the tissue and said that he is now showing neuroendocrine differentiation.
They are still treating it as an adenocarcinoma. He was offered another course of docetaxel until they discovered he was still suffering from neuropathy so they changed the drug to cabazitaxel.
He has also had a blood test for small cell.
His cancer hasn’t progressed that much in the last 4 years but I too don’t know how this changes things.
Thanks for your reply, had a look at your profile and have the same thoughts, hope it’s not small cell. Sounds like (we) are lucky in that they have found it and it’s not just growing uncontrollably
I would like to second tango: "It could be also treated with Lu 177-DOTATATE if the cancer express somatostatin receptors." As far as I know this is more effective than a chemo and will cause fewer side effects.
Hello, my name is Chuck and I was treated for prostate cancer, Gleason 9 adenocarcinoma with neuroendocrine differentiation in 9/2013. My PSA was 3.2 but my doctor felt a lump on my prostate as a result of a DRI. I was immediately treated with chemo (Taxotere and Carboplatin) and then 45 days of radiation. That prompt treatment by my oncologists is why I believe I am still alive today and doing well.
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Strange case of my Dad's PCa
neuroendocrine tumors
Neuroendocrine 
Neuroendocrine Prostate cancer (NEPC) questions. 
