Nalakrats

I am concerned for you that you may be presenting Neuroendrocrine Pca Cell Activity. Typically it grows and spreads to both hard and soft tissue without an increase in PSA. Another sign is the pathology being determined to having Ductal. I would expect there was also terminology of undifferentiated, in the pathology report. I would call your Doc. at MD Anderson and ask for a [Chromogranin A]---blood test--or get it from a local GP. This test can determine Neuroendrocrine Pca Cell activity. Then if this is so--treatment plans will probably be altered. I am not a Doctor---but this is what I am sensing.

Nalakrats

Tall_Allen

You are right that ductal is invidious that way. It is one of the low PSA subtypes and hits unusual places first. She is right that lung biopsies can be tricky, but may really be unnecessary since you already know it is ductal, and the lung is one of the places it spreads to. I think it is a good idea to monitor progression with periodic Axumin PET scans, because PSA will not be a good indicator for you.

As to what to do about it... If you can get your insurance to spring for it, you might talk to your oncologist about combining docetaxel and Zytiga along with your Lupron. This is one of the variants that you really have to throw the kitchen sink at.

You mentioned MD Anderson. They are running a "kitchen sink" clinical trial called the DYNAMO trial that would enable you to get experimental medicines. They try different combinations until they find one that works for you. The medicines include apalutamide, Zytiga, ipilimumab, cabazitaxel and carboplatin. Here's some info about it:

clinicaltrials.gov/ct2/show...

DenDoc

My story is somewhat similar. I have had mets on the lining of one lung (pleura) for over 9 years. Lupron kept PSA low and no change in lesions until 10 months ago when lesions grew on PET CT scan. 5 months ago I had a biopsy which showed "Small cell" tumor. I have a malignant pleural effusion requiring an indwelling catheter to drain the fluid. I am on chemo with carboplatin and etoposide now. My remaining prostate cancer is now castrate resistant and my PSA has suddenly started rising. Mine had always been low (<2.0).

We do not have Axumin in our area so I am followed with PET scans which image the lesions quite well. Still no known bone lesions.

gourd_dancer

Quick note. The controversially is that with biopsy, there is a change of inadvertently spreading cancer cells. I brought it up ten years ago or so. My guy said the safest approach is identification through imaging. It is why everyone should have scans upon diagnosis of PCa and then after primary treatment. With 20 scans under my belt, it is how we tracked mets.

Gourd Dancer

pablojaes

Hi Neathuh1. We are on the same boat, except my PC is not Neuroendocrine, that I know off. However I developed lung mets with a PSA of 1.5. That was after a 2 year vacation from Lupron, and just watching the PSA going slowly up. I elected to restart Lupron and follow up images. It's been 15 months since and the last CT almost a year ago showed no mets. One possible good thing is that when PC goes to lungs tends not to go to bones. My oncologist just requests PSAs every 3 months. I am worried that PSA may not be a good marker, but since it remains undetectable we don't do anything else ( no other diagnostic images). I am hopeful to remain like this for a while, but I am pretty sure I will become castrate resistant. Then it will be Lupron ( for life) plus some other ADT. Keep us posted. Salud!

Neathuh1 in reply to pablojaes

Gentlemen, thank you all for taking time to reply. I feel so much more better equipped now for when I discuss options with my doctors. I still am in need of a giant spatula to peel my wife down from the ceiling though. She doesn't take my reports quite as calmly as I.

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