Where am I now?

Hi David

this is all a bit new to me, mu husband who is 58 has just 5 weeks ago been diagnosed with aggressive metastatic prostrate cancer, PSA 116, Gleeson 9, spread to Lymph nodes, hip and pelvis, he is on the injections every 3 months (he has had one so far) he has been asked if he wants to join the Stampede trial and we think he will be offered two more pills to go along with his injections, he hasn't had another PSA test yet and we don't really know what to expect - will or should it drop by lots or is it gradual, he is quite well in him self and still working (we have a mortgage to pay), work he says makes him feel 'normal' difficult to come to terms with all this and not sure what to expect.

It sounds like you are going through a tough time at the moment, I do hope you have good results and feel better soon, my husband is tired all the time and I know that is an awful feeling. x

Hi adnileb, thank you for your reply.

First of all please remember that each one of us with this disease is on a different journey and our waypoints will be quite different.  I'll try to explain.  Your husband is 58 at diagnosis, I was 80 and I'm still here.  We both have aggressive prostate cancer with high Gleason scores but his PSA is 116 whereas mine was never higher than 16 before treatment started a year ago.  So we cannot be compared exactly.  I hope I can help with a little information but you will get lots of support from others on this website, (I call it the Macsite and it has helped me so much).

Gleason is an accurate measure of the prostate cancer and how quickly it can spread.  PSA is an indicator that something is going wrong with the prostate and is only of value when it drops, (good), or rises (bad), on treatment.  It is not a diagnostic test for prostate cancer on its own.  You husband's doctors should explain to him, and to you if you go along too, exactly what the Stampede Trial is and what it sets out to do.  I understand it to be testing new drugs to see if they work better than the standard treatment but it's not as simple as that.

I've had standard treatment so far, I believe.  I was pressed to go on the Stampede Trial a year ago but my urologist either didn't explain how it worked to me or I couldn't understand as I was frightened.  So I said no!  Others have said yes as they want to benefit others who follow with this disease so I'm not very proud that I chickened out of something I didn't understand then.  As I'm much older, at 82 next month, I'm told my cancer is more resistant to treatment and doesn't produce high PSAs.  As it happens my tablets and injections, (bicalutamide and Zoladex), worked at first but failed after 6 months and I was lucky to be put on abiraterone tablets by my oncologist in January this year.  The rest is in my rather sad little blog above to which you have so kindly replied.

Your husband has a much better chance of doing really well and for much longer.  Tiredness is part of the effect of treatment and just has to be beaten somehow.  I wish both of you well and I intend to be around the Macsite for a good while yet.  Cheers to you both,