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Zero symptoms, PSA 61 & Worrying DRE, Aged 52.

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User

Posted 01 Mar 2022 at 20:42

Hopefully good news tomorrow keep in touch loads of clever and helpful people on here 👍

User

Posted 01 Mar 2022 at 20:58

All the very best for tomorrow. The agony of waiting is part of a deeper challenge we all face, which is feeling a loss of control. Once you have some information to go on, and a plan you can get your mind round, you can begin to put your own stamp on this.

Best of luck

User

Posted 01 Mar 2022 at 21:01

Matthew, take a pencil and paper to jot things down.

Thanks Chris

User

Posted 01 Mar 2022 at 21:49

All the best for tomorrow and hope you will have a clear plan to get your head round.little steps x

User

Posted 01 Mar 2022 at 23:06

Good luck.

Dave

User

Posted 02 Mar 2022 at 13:53

Hi everyone,

Well, our worst fears have just been realised in the last few hours.

I am officially Stage 4 Gleason 9 with spread to the pelvis, pubic bone and spine T5 vertebra (at least). I will need a further full CT scan to make sure they've identified everything. The appointment was itself worryingly mishandled too, which wasn't helpful. Anyway, that doesn’t change my new reality.

It's seems surreal that in the space of 3 weeks or so, with still no symptoms aged just 52, from a random PSA test for prudence sake we now find ourselves in a life-limiting situation. Life isn't fair I know, and I shouldn’t complain too bitterly as there are so many less fortunate that me, but today of all days I think I'll give myself a little room for a grumble!

Any advice for this next phase always welcome.

All my best to you all,

Matthew

User

Posted 02 Mar 2022 at 14:52

Matthew that's not what you wanted to hear but there are plenty of examples on here of guys with a similar diagnosis who are still kicking hell out of life many years after their initial diagnosis.

The fact you are symptom free is good, it means you are starting from a strong base.

The difficult bit now will be deciding your treatment path. It helps if you have confidence in your oncologist. If you don't it's always worth a second opinion.

Suspect, it will be Hormones immediately, maybe chemo and or RT too, maybe upfront Enzo or Apalutimide, your Onco should be on top of the latest best practice, make sure you ask about all of the above and understand the Oncos logic for whatever he recommends.

OR you can chose to do nothing (as you are symptom free) like Chris has for many years..

Edited by member 02 Mar 2022 at 14:54 | Reason: Not specified

User

Posted 02 Mar 2022 at 15:23

So sorry to read your diagnosis Matthew. There are some wonderfully kind people on this forum with great advice. Hope you find the online community helpful.

User

Posted 02 Mar 2022 at 15:26

Not the news you wanted Matthew but you now know where you stand and can start taking treatment options.

If you want a chat pm me.

John

User

Posted 02 Mar 2022 at 23:16

Well Matthew, that is not very good. Sorry this has happened at quite a young age. (I was also 53 and G9, but fortunately only T3). To offer as words of comfort "oh well, you'll almost certainly live at least five years" is hardly reassuring. I could also point out that one of our members has been running ultra marathons for several years after a T4 diagnosis, and another is 15 years post diagnosis. So certainly a life changing diagnosis, but tomorrow you've got to get up put one foot in front of the other and get on with your life. Treatments are getting better, things may not be as bad as they must look now.

Dave

User

Posted 03 Mar 2022 at 07:36

Well said Dave keep moving forward Mathew treatment getting better all the time none off us suffering from this terrible desease know really how things will unfold we just hope for the best hopefully your treatment will start ASAP 👍

User

Posted 03 Mar 2022 at 12:30

Definitely not what you wanted to hear Matthew, but as others have said, this forum is a great source of help and support. You have every right to grumble, don’t be too hard on yourself. It’s difficult to digest. I hope when you have a full set of results your medical team will spring into action with a treatment plan. As franci1 has said you are symptom free so that’s a good base Take each day at a time. X

User

Posted 04 Mar 2022 at 00:13

So sorry to read this Matthew. It’s not the news that you wanted but definitely so much that can be done. It is obviously a really difficult time for you and your family, hopefully when you have all the final details and a plan things will seem more positive for you. It is a really good thing that you have no symptoms. I always remember initially saying to Rob (who had no symptoms either) that our main aim going forward was just to keep him feeling fit and well and that’s all that matters, so I focused on diet, fitness and mental health and so far he has never felt unwell at any point. Take care Elaine

User

Posted 04 Mar 2022 at 12:42

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. 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 am lead to believe (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.

Matthew

User

Posted 05 Mar 2022 at 09:00

It's the diagnosis that counts for serious illness cover not the symptoms..

Is the Radiotherapy to the prostate and the limited number of metastasis?

User

Posted 05 Mar 2022 at 11:03

Hi Matthew,

I can well understand the need for 24 hours to clear your head. I can also understand all the diverse reactions from people. One thing to know is that you will settle down in to the new normal.

Make the insurance claim, I would think it would pay out now, you have incurable cancer, but it is not terminal cancer yet.

Don't rush in to making life changing decision. Don't rush in to selling the house. If you have lived there for 18 years I presume you like living there. Moving assets in to cash when we are entering high inflation would be a bad move. Over the next three years start looking for the right size house for you wife and family to live in when you are gone, if the right house comes along then buy it.

Don't sell the businesses yet, you will get very bored sitting at home waiting to die.

For the time being change very little, OK the chemo and hormones may take a bit of a toll but for a lot of the time you will probably be functioning just as well as you were before the diagnosis.

I don't trust financial advisers they usually drive nice cars, and that means they are getting paid too much out of my money. But a good one, now that you have the luxury of knowing approximately when you will die, may be able to plan for a pension and how your wife can inherit the pot tax efficiently.

Dave

User

Posted 06 Mar 2022 at 23:42

Hi Matthew,

Found the profile of the marathon runner I mentioned in a previous post: https://community.prostatecanceruk.org/default.aspx?g=profile&u=17723 . he was given about two years: still here 7 years later, and running marathons. (BTW kev if you're reading this glad you're OK, you hadn't posted for nine months I was worried you'd popped your clogs; occupational hazzard on a cancer forum).

Dave

User

Posted 07 Mar 2022 at 19:04

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

User

Posted 07 Mar 2022 at 22:14

good luck with your treatment matt a couple off months ago was talking to a guy at hospital his PSA had gone to 1300 and they gave him 2 years that was in 2011 he was still here battling away in 2022 and responding to his latest treatment never give up keep moving forward tons off support on here everyone looking out for each other with some remarkable people helping with great knowledge off this desease we are all behind you as we are for each other 👍

User

Posted 10 Mar 2022 at 11:41

Welcome to where no man wants to be Matt (im sure plenty have said that already!)
I was in the same mode of transport if not the same boat as you in 2019. See my profile for details but in brief, late 50s/no symptoms/PSA 55 at diag/bone mets/HT and up front chemo, no Radiotherapy offered though, so that may be something that's part of the standard plan a couple of years on?
Carried on the same as before diag to be honest, though Covid obviously put paid to that over the last couple of years. The Chemo was nowhere near as drastic as I was expecting, nor do I seem to have much in the way of side effects from the HT. Hoping for a long, hot summer with flat seas 😎
All I can say is, dont let it change your lifestyle for as long as possible?

Stay strong

Steve

Good luck to everyone coping with the insidious big C

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