Hi! I'm actually a therapy radiographer so I treat patients with radiotherapy. In my personal experience, PSA can vary greatly and it isn't a reliable indicator of prostate cancer stage or aggression. Some patients I've treated have had PSA over 100 but been early stage and treated well. I'm afraid until a biopsy and scans takes place, it isn't possible to get a good idea of what exactly is happening. Many patients find their PSA drops dramatically after starting hormone therapy, but your consultant would be able to discuss this with you in greater detail.

Wishing you all the best! 

Mathew,

Also sorry to hear about your results. You can battle through it with support and take each step at a time, it's a huge shock for you and family but there is support out there. One thing i've found is that i've not tried to hide it from anyone (work colleagues , friends etc) and without exception all have been sympatheyic and supportive - it feels like some of the load is shared.That may not be for everyone but however you handle it i wish you well,

Simon

Thanks Simon, I would have been thrilled to have been diagnosed at an earlier stage like you. Wishing you and your family the speediest of full recoveries from surgery.

Thanks Simon, I would have been thrilled to have been diagnosed at an earlier stage like you. Wishing you and your family the speediest of full recoveries from surgery.

Hello all - I needed 24 hours to get my head and heart in order and support my wife, kids and extended family who are all, like me, shell shocked. Some are angry, some are being brave, others are asking for miracles but all are just sad.

I saw the consultant yesterday evening for the first time (the diagnosis was delivered by a nurse the day before who was very unfamiliar with my file, treatments etc.) so it was good to sit down with him. Alll is confirmed - Stage 4 G9 with three sites in my spine, pubic bone and right hip bone. An average prognosis he said was 5-6 years, could be more or less etc. We all respond to treatment differently of course. That was not a shock and part of me was worried he would say less than that given the spread. I plan to follow your encouraging suggestions here and push hard to extend my life (and quality of life) for longer than the "average"...Just hope I am up to the challenge ahead.

Today I start HT (tablets for 2 weeks), in a fortnight Chemotherapy starts, followed by Radiation Therapy, and probably the same cycle repeats. I will know more when I meet with my new clinical lead, the Oncologist.

The biggest thing for me now is worrying about financial security for my wife and family once I am gone (and during the treatments). This is a major source of pain and anxiety for many of us who are too young to have fully contributed to a pension etc. My wife is and has always been a stay at home mum so I need to get my skates on to get my businesses ready for sale and downsize my home of 18 years. I do have a Serious Illness Cover Policy with Vitality that I believe/hope  (having just started the claim process) will pay out for Stage 4 cancer but I worry, as i have no symptoms as yet, they may resist paying out. 

Has anyone any advice in terms of Serious or Critical Illness insurance claims?

I wanted to thank you, each of you, for taking the time to extend the hand of friendship and care. I would like to do the same going forward. This is a wonderful stage where the very best of human nature is displayed.

And one more thing [@Jellies]‍  Rory, thinking of you buddy...how did the biopsies appointment go, hope you're bearing up mate? 

Matthew

Just a quick note for you,i was given 5 years max over 6 years ago, and im still managing ok my last PSA was 0.16 i have blood test every month, still having my univited guest hanging around but getting usto it, strange what you can get usto.

Think positive helps take care .

Billy

Hi Matthew

Really sorry to hear of your diagnosis.  I had just logged in now and when I read your results I had to take a moment.  I was really hoping that your bone scan was clear.  As you said you had no symptoms and just caught this by random chance.   So you have been incredibly unlucky and have every right to be upset and annoyed with this situation that you and your family simply do not deserve.  

But I'm super impressed by your attitude and determination to work your way through it.  Here's hoping the treatments work well and you can get the cancer under control. 

My biopsy is next Tuesday and I will be relieved to get it out of the way.  Reading your story makes me even more determined to make the most of whatever comes out of it and it is great to have your support.  

Please keep in touch as you move on to your treatment.

Take care,

Rory

Hello everyone,

Thank you all for your timely replies, counsel and encouragement. What amazing wisdom and goodness.

My goodness, this is really hard to take in. As you all know from your own experiences, cancer impacts everyone around you. Our family is struggling to come to terms with our new reality. Our middle daughter is due to marry in the US in July which of course I cannot now experience in person due to the treatment regime. Instead we're holding a hastily arranged Ring Exchange Ceremony locally on 9 April and she can marry her fine American fiancé legally as planned in the summer. Already life has begun to change.

If I'm being brutally honest, I think I am just beginning to process that my life is now going to be a lot shorter than the average man in the UK. Scary to think I am statistically less likely to get into my 60s although I will try my best to buck the trend!

I've started Hormone Therapy x3 tablets per day (Cyproterone 50mg) prior to my fist HT injection on 16 March. I'm told I need to have a full body CT scan as the previous one focused on my pelvis and chest. Thereafter Radiation Therapy and then Chemotherapy although I'm not sure what form that will take yet. I have yet to meet the Oncologist.

Wishing you all well and thanks so much again for your invaluable help.

Matthew

PS: [@Jellies]‍ hope the biopsies tomorrow goes well buddy...will be thinking about you.

PPS: [@Billygoatt]‍ you keep going and show me how it's done!!

i made my darling wife a promise, that I'd look after her when she got old (she's nearly 14 years older than me), i was 21at the time . Before she would marry me im determined to keep that promise as long as i can,i also try to keep busy and occupied as much as possible,in other words other things to think about , I've started jigsaws and quiz books when not cleaning house and washing, garden, some time its hard but being determined helps . The better I feel the better family feel, even though those other thoughts Pop back .

Try to keep determined, and keep occupied . 

Billy

Thanks for the great advice [@Billygoatt]‍   
Your dear wife is a lucky lady indeed. 
 

[@Jellies]‍ hey buddy, how are things following your biopsies on Tuesday 8th?

Hope you're all doing well in the circumstances. We as a family are adjusting to the terrible diagnosis as best we can, early days yet. 
 

Matthew

Hi Matthew [@Matthew2022]‍ 

Good to hear from you and very best wishes to you all. My biopsy was fine.  The procedure itself was absolutely painless - as soon as they gave me the sedative I conked out and woke up outside in the waiting area. Was peeing blood for about a week which has cleared up now.  It was a bit disconcerting but not much sympathy from the wife who has had 3 c-sections :-)

Next step for me is meeting the consultant for the "big reveal" on the 28th after I come back from holidays.  They will have all the results by then.  Not giving it too much thought for now but will definitely be nervous on the day.  Honestly I have no idea which way it will go in terms of cancer diagnosis, severity and treatment options - my scans seemed not too bad but with such a high PSA you always have nagging doubts.  

Also great to hear such a positive approach from @Billygoatt  

Rory

So far so good Rory. Your consistent pragmatism is absolutely the way forward. Hope you have a great holiday and let's expect the best outcome for you and your family when you return home. 
 

Rooting for you. 

Hi Matthew [@Matthew2022]‍ 

How are you getting on?  Hope you are all doing OK.

I had my consultant meeting yesterday.  His update was that my CT scan was clear but the biopsy showed cancer throughout my prostate.  The scores ranged from 1-3 and mainly 3.

As a next step he recommended non nerve sparing traditional surgery.  Non nerve sparing because the cancer is on both sides plus with my high PSA he wants to take out as much as possible inc lymph nodes.  Open surgery I think to have a better "look around".  He can get this done in 2-3 week.  

The MDT also agreed that I should have a PSMA scan but he doesn't think the outcome from this scan will impact the recommendation for surgery.  So, depending on timelines I might get this scan before or after the surgery.

He also said that post surgery it is unlikely that my PSA would go to zero meaning additional treatment likely.  So it does look like a long road ahead with other treatments to follow.  

Still getting my head around it all.  Take care 

Rory

Hey Rory,

I was thinking about you yesterday knowing it was your big day for the results. 

I know it is a lot take in and you have a long road ahead but the way I read things, you are definitely in a CURATIVE pathway. Fantastic. You will cope superbly with whatever life-saving treatments and Surgery you receive. 

We're doing increasingly well given the Gleason 9 and stage 4 diagnosis. Tough times for us. 

My first meeting with the oncologist is tomorrow so will see what treatments I'll be offered. 

Thank you for keeping me in the loop, anxious to share in your journey. 

So far so good!! You'll be fine in the long run.