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

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.

Thank you so much, Mr U. It's a new day, albeit rather wet here, and although both tearful and disappointed, we are holding on to hope. Simple things planned like a wet dog walk - we have to go on. X

Fresh air and green trees give me a boost, enabling more sensible thoughts.

Enjoy your walk.

Keep asking questions to ease your worries. We are always here when you need a hand.

Keeping on keeping on is sometimes the only thing possible.

After my diagnosis, I was in a strange place mentally. Despite the fact that I was told I was to be on a curative pathway, my thoughts were all about death. The only thing that I could do was put one foot in front of the other and keep going.

Once the treatment had started in full, and I began to realise that I wasn't going to suffer ALL the side effects in the first couple of weeks, I began to surface from this funk.

It seems to me that this is something we all go through.

There are treatments for all stages now, and may be more in the near future.

I am sure that, in the coming years, more and more people will be able to talk about cures.

It seems to me that this is going to be after prostate cancer becomes more like a chronic illness.

I wish you very well.

Thank you so much. Your bio follows our story in many ways, and you have made me/us feel much more positive x

Prostate Cancer UK have sent me some really useful info regarding Non-secreting PSA.

"Non-secreting prostate cancer has historically referred to men who don't produce any, or very little, PSA over normal levels. PSA is a protein that's excreted from cells and can be detected in a blood test. As your husband's PSA level was raised, it might be worth clarifying if his team consider him to have non-secreting prostate cancer, or PSMA expression negative prostate cancer (i.e not having PSMA receptors in the cancer cells)." And a very helpful, easy to understand explanation of how the PSMA Pet scan works.

And we now have  FDG Pet arranged for this Friday, which should confirm any spread using a different tracer. 

So it goes on...questions, answers and worries, but will get there in the end. Thank you for all your support.

Hi Wayfarer, I've a very low secreting PCa, intraductal with large cribriform pattern variant. At present no neuroendocrine markers, on diagnosis 40 months ago, my only symptoms were a couple of visits to the bathroom at night, and a decrease in semen, after having all the usual tests, plus a TURP, I was diagnosed Gleason 10, T4 N2 M1a, mets to 5 organs and 8 lymph nodes with a PSA of just 8.2. Treatable, not curable, treatment Prostap3 & 20 RT fractions- aggressive to the whole lower pelvic area, results NED except for 1 node, side effects a little tough but very rarely impact my life, though they are worsening, we are still enjoying life, obviously not like BCa, the downturn in side effects is likely due to starting Xtandi alongside Prostap3, we're off on our 7th holiday of the year tomorrow, with 4 more to follow, there are down days my friend, but life does go on.

Eddie