Neuroendocrine PCA mutation

[Slate52]

Hi, I’m UK based.

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

[ctarleton]

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.

cancerresearchuk.org/about-...

cancerresearchuk.org/about-...

See also:

icr.ac.uk/our-research/rese...

Good Luck!

Charles

[tango65]

Neuroendocrine prostate cancer could be treated with platinum chemotherapy alone or associated with taxanes or etoposide or gemcitabine.

onclive.com/publications/ur...

It could be also treated with Lu 177-DOTATATE if the cancer express somatostatin receptors.

[Tall_Allen]

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.

[Slate52 in reply to Tall_Allen]

Thanks TA, I will ask the question about PNI, it’s not been mentioned previously

[Tall_Allen in reply to Slate52]

It's always a good idea to ask for a copy of the pathologist's report too - sometimes things get lost in translation.

[Slate52 in reply to Tall_Allen]

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

[Tall_Allen in reply to Slate52]

Here's some options/clinical trials for NEPC:

pcnrv.blogspot.com/2016/12/...

[Lagovista2018]

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

[j-o-h-n in reply to Lagovista2018]

Immunotherapy. Treated with Keytruda?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/06/2019 10:02 PM DST

[Slate52 in reply to j-o-h-n]

Keytruda might be a struggle in the UK I think

[j-o-h-n in reply to Slate52]

My bad, I thought UK stood for UnKnown....

(pssst.... I actually missed the "Hi, I’m UK based." introduction).

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/072019 12:11 PM DST

[Ssiddy]

Hi

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.

[Slate52 in reply to Ssiddy]

Hi,

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

[GP24]

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.

[Prellch]

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.