Hello Cbrccc

I'm sorry to hear about the recent news about your diagnosis. Undoubtedly it will have been not easy to hear this and it's understandable that you have questions and concerns about the next steps. 

It's possible that at the time of your diagnosis, the cancer hadn't metastasised or that it was so very small that it wouldn't have been detected by the scans. But it's impossible for us to say if this was the case or if there was some error in your initial diagnosis. 

I'm going to tag in eddiel to my reply to you here. Eddie has been living with metastatic prostate cancer for a little over two years now. You can read more about his journey by clicking on his profile but I'm sure he will pop along to share his experiences with you. There are a number of other gents posting on the forum who also have a stage 4 diagnosis and hopefully some of them will reply to your post as well but you can also use the forum search function to look for posts where prostate cancer is mentioned. 

If it would help to talk things through with one of our nurses and you're outside the UK then I'd suggest posting in the Ask the Nurses topic area or you can contact them by email using the link at the bottom of this page. I know they will be happy to offer any advice and support they can. 

Whatever decision you make about treatment Cbrccc, I wish you well for the future and hope that you'll be getting in 18 holes on a regular basis for a good while to come yet. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Cbrccc, and welcome to the forum, though sorry you have to be here, I am sorry you too have prostate cancer, As moderator Jenn suggests and I would agree, It's probable you never had any mets, or they were too small for the MRI to see them, and it took a little time and a much more sensitive scanner too pick them up, this would suggest your mets have been detected early, enabling treatment to be much more effective, and if your cancer is oligometastatic "spread to fewer than 5 places", treated for many years, can I ask Is your radiation treatment EBRT or SBRT and have you started  bone strengthening treatment?, I'm on bisophosphonates as RT can weaken bone. I have been on hormone therapy HT 28 months as well as 73gy of radiation during EBRT, Firstly HT does cause side effects, but not everyone gets them, a few guys get off lightly, and most are easily managed, I can understand your fear of being immobile, I am at high risk of MSCC, but you can't, let what if's, rule your life. My side effects were fatigue, hot sweats, emotional changes, man boobs, all bar the moobs are behind me, you being fit and in great shape will be a big help to you, if you were to go on HT, best wishes.

Eddie

Hi Jenn , thank you for your reply  , I recieved a messsage from Eddie and is info explains what could have happened so I am feeling more comfortable with it all 

do I am about to reply to him perhaps u will see what conclusions I have come to 

thank you so much for your support much appreciated .

Hi Eddie, thank you so much for  posting  to me. You have your own issues to deal with which I hope  are improving so  it  is much appreciated 

I am having EBT , total of 25 sessions but I don’t know the strength but I will ask .

i had never heard of oligmastic  before you mentioned it but on checkiing yes that is the case so feelinga little more  optimistic now .

They plan to give me 2 years HT so I will make the best of that to and carry on exercising golfing etc  til I drop .

thats me so yhanx you again and I will update you. In a few days when I have more info .

sorty to hear you have the risk of MSCC and I sincerely hope that never materialises .but you seem like you will deal with whatever comes your way . 

you are a mentally strong guy Eddie I hope I can emulate you and beat this shityy disease . .

Regards 

clive 

Hi Clive, you are welcome, and thank you for your good wishes, good luck with your treatment, you know where I am, If I can help just let me know.

Eddie