Non PSA secreting prostate cancer....any one with experience of this?

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We had our first meeting with the oncologist this morning.

Has anyone any experience of non PSA secreting form of the disease, please. It appears to be relatively rare, and is given as the explanation of why the PSMA Pet scan did not reveal any spread by 'lighting up'.

Treatable, but no longer curable, and there are still several 'unknowns' that the team are to discuss.i.e. if a suspicious lymph node outside the pelvic area is involved. Different type of Pet scan may be requested. Outcome 'not good' has brought us both down.

Treatment plan is to continue with Prostap by injection, and add on Apalutamide by tablet.....the side effects of this appear extreme.

Feeling rather shocked and disoriented to say the least, as we had mentally prepared for shrinkage by HT, followed by radiotherapy, and hopefully a curable route.

Any advice, your experiences gratefully welcomed. Thanks

Mr U 7 hours ago

I’m a not-curable too and like you I wished similarly for a curable pathway. But that’s not the end of the story. Far from it.

Mentally you will both feel beaten up and hurt that the odds were against you but help is at hand at every twist and turn. This forum is here to help. The experienced fellow and fellowesses are ready to react to your questions and your worries because that’s what we do. The support here is real and anonymous (if needed) so ask away, day or night and someone will help.

This is a couples disease and you will both be affected similarly all the time. Yes, the treatment is for him - but the other-half is pulled through the same hedge backwards. So you will both need support and care.

Everything depends on your positivity as a couple to follow the path laid out in front of you step by step. We walk with you to.

The more you learn the more you worry but the information you seek is not with Dr Google. Stay away from digital doctors if you can - ask clinician's and your cancer team whenever you can, and of course ask here on the forum.

I know due to bitter experience that the answers don’t always come quickly and often are not what you want to hear but little by little you will become an expert on your new body. It has changed but it is still you. It’s not easy to believe you are a cancer patient but we are all there with you struggling with our thoughts and problems as we take it day after day to give it our best shot and to be brave when we can.

I cry a lot and that’s because some days I feel sad, but other days I laugh my head off. The cancer is relentless but so are we - and there's always something to giggle at.

There’s a profile page (press/click top left where the green chair is) which is where you can jot down your treatment and result info and details of comorbidities etc. That’s a useful resource for the more experienced members to review and more accurately evaluate and answer your questions. Just a thought.

But hang in there, everything is crap at the beginning of the pathway when scary is the name of the game.

Don't ever feel alone. We are here to help if we can.

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Non PSA secreting prostate cancer....any one with experience of this?