Confused about what I should do next.

Hello mrfixit89cf49 

Welcome to our exclusive club, although I am so sorry to find you here. I am guessing this issue is keeping you from sleeping as if you are UK based your post was at 2.34 am this morning!

As your specialist wants to start you on Apalutamide I can't go against this as I would be going against professional medical advice. The Firmagon has obviously done it's job as you say by reducing your PSA from 420 to 50 but that in itself is still high - but it's on it's way down!

Like you I have been on HT for 3 years - yes that reduced my PSA from 182 to under 1 - during those 3 years I battled with every side effect going (I am 70 in October) but I managed a great Quality of life - I increased my holidays, leisure time and family time and in my own mind my quality of life was great. If you read my journey (click on my name or avatar) you will see I have a rising PSA and will be back on Hormone Therapy soon.

For me it's been a question - can I cope with further treatment and still have the same quality of life? The answer is yes,(as I have been there before) I will accept the treatment and any side effects as I have a positive attitude and know that the treatment will extend my life expectancy and enable me to spend quality time with my wife, children and grandchildren and have even more holidays. .

Treatment or Quality of life - it's a very personal choice - my 4 grandchildren made it very clear to me what I should be doing, I want to stay around for them. (I have just had 3 weeks holiday with a 4 and it was amazing).

I hope my ramblings help - I am sure others will be along later.

Best wishes - Brian

I had enzalutamide and, when that resulted in a trip to A&E, nausea and brain fog was switched to apalutamide which caused a seizure meaning I can no longer drive.

Very difficult to give advice but I share your view that quality of life is really important and apalutamide has taken much of mine away.  I know that it is only a 1 in 100 chance of a seizure but if I had realised that was the odds and the devastating nature of the consequences would I have gone ahead?  I honestly don't know.

I am now on just Relugolix with a PSA of 0.07 but I know it won't last and that drugs like Apalutamide would have helped to  keep the inevitable at bay for longer but the consequence for me were pretty awful.

Hello MrFixit

your dilemma is, perhaps, just as difficult as it is for those people who have to chose between surgery v RT! It is, essentially also a repeat of the decision you made 11 years ago of to treat v not to treat. I am wondering what persuaded you then not to treat and if those factors have changed now?

My husband is on a curative pathway but , of course, there are no guarantees and there are side effects. Before progressing to treatment, his PSA was monitored for several years as it gradually crept upwards. He declined the old fashioned TRUSS biopsy which had to be performed then before MRI ( NICE guidelines then) and which could only reach a small part of the prostate, carried the risk of sepsis and was very unreliable. Once the diagnostic pathway was changed, he went ahead and was diagnosed as Gleason 4+3 T3a N0M0. Would earlier treatment have held more chances of success , been less invasive, have less side effects? We do not know. None of us can turn the clock back.

He was initially told he would need hormone therapy for 3 years, then 6 months, then 2 years. During that time I watched him age 10 years! After 18 months, and with other health problems, he reached rock bottom. I listened to him as he told the oncologist he could not take any more of the life he was living. This was 18 months into HT and after 20 factions of RT. The oncologist stopped the HT there and then! My husband has now received a diagnosis of osteoporosis - another side effect of the treatment? 

But, since stopping the HT his PSA has remained below 1.0 - so far ( touch wood!). Most importantly, he is feeling so much better! 

what I think I’m trying to say is that the decisions we make are very personal and influenced by so many factors external to the disease itself. There is no right or wrong because everybody’s cancer and everybody’s response to treatment and everybody’s personal circumstances combine to make us all unique. 

The debate between quality v quantity of life is also difficult. My husband is having a better quality of life but I want him to be with me for ever! We get greedy for life itself but what price do we need to pay for that?

so, as I see it, there are risks whichever way we jump in these dilemmas. 

what I have experienced in this forum , though, is that people will share their own experiences and thoughts with you but will never voice a judgement about the decision you ultimately make. So, please take on board the useful stories you will hear but always recognise that the decision is ultimately yours and you will get support here whichever you choose.

i do wish you all the very best and really hope that you can arrive at the decision that has the best out come for yourself,

Hello Everyone,

I would like to thank all who replied with their experiences it has helped.  And yes, it's a decision that I have to make based on my own circumstances and requirements.

Thank you all again.

Greg