Living with stage 4 prostate cancer, the bad bits!


I make no apologies for my view that no man should be refused a PSA test if he’s in the high risk groups just because he’s asymptomatic.

They tell me I’d had the cancer for 10 years but I’d had no symptoms at all (80% of men with early diagnosis don’t have symptoms). Was I bitter? You bet I was. If I’d known about having a PSA test every year from age 50 and actually had one I would have been diagnosed much earlier and had curative treatment.

Instead here I am living with stage 4, effectively a terminal diagnosis.

The biggest shock was that 1 minute I was training to run a really tough ultra marathon and 36 hours after I was told that my runners “groin strain” was prostate cancer. Within 10 days of further tests it was confirmed and I was told I might only have two years to live. That was May 2017.

Life as we knew it ended. They call it the new normal but no aspect of my post diagnosis life is normal. They should call it the new abnormal.

I was told on the telephone at 8:00 in the evening as I was leaving running club. I had the worst 15 minutes of my life, driving home in tears and absolutely in pieces to break the news to my amazing wife (her part in the journey is so important, more later). That was the 2nd worst conversation of my life. The worst was still to come, telling the children, which we put off until we knew more and the tests were completed.

We had to get them round but couldn’t tell them why and they must have been terrified. I think that what they heard was way more horrendous than they might have anticipated. Lots of tears and family hugs followed.

31st May 2017 we met Onco for 1st time. It was the day we should have flown to South Africa for the ultra! We discussed treatment and it’s impact. Androgen Depravation therapy coupled with Abiraterone. Effectively I was going to be chemically castrated. Once you start on this treatment you wont get an erection again but it won’t matter because you’ll have no libido and, by the way, your penis will shrink!

Would I still be able to run? Yes but you’ll be a lot slower and find it a lot tougher. I am and it is!

The effect of hormone therapy set in gradually. It was like watching part of me, my masculinity, fade away. For a few months there were erections but then no more. As the treatment is until I die this was now my life, no longer a man!

Hot sweats, hot flushes, weight gain, loss of body hair were so tough to deal with but as an athlete the loss of muscle mass and bone density coupled with fatigue have been horrendous. The treatment has stolen my masculinity as well as my athleticism, I can’t do anything as well as I used to! Fatigue is so hard to explain. It’s more than tiredness. You want to flop in a corner. It often hits me when I am running and I know I just can’t go on. In the early days that meant walking back to base, in tears because cancer has robbed me of something else. Now I’ve learned to accept it as part of the new abnormal.

Cue visits to see a psychosexual therapist with my good lady to talk about how no testosterone leads to loss of drive but you still have desire and need to get your mind into that space. Daily pills may help so we give them a go and yes they help with the mechanics but not with the mind. They don’t return your stolen libido.

Cue more appointments and now we get a vacuum pump prescribed. Practice pumping up the penis for 10 mins per day for a month just to keep a blood flow going I’m told. Totally demeaning and when I was 60, pre diagnosis, something that I would never have thought would be part of my life. How could you anticipate that?

Penetrative sex now completely off the agenda as the mechanical erection simply isn’t enough to sustain proper sex. So we use our imagination. It’s better than nothing and we enjoy the intimacy but I mourn my lost manhood. I’m still only 62 and never in a million years did I see this in my life.

Then you have the mental anguish of living with stage 4. How long will the first line treatment hold the little bugger off. Will it be effective at all. How long will I live. Will I see my grandson become a teenager (unlikely but I’ll do my best). Number two grandson comes along. How much of his life will I share? Will I get to walk my Daughter down the aisle? Will I even meet her children?

Time passes and the black dog of despair does ease a little. It was a year before I was even remotely thinking straight but cancer was the first thing you thought about when you woke up, the last thing you thought about before going to sleep and was never far from your mind at any time, every day of the rest of your life!

There are still really bad days when the fatigue sets in and you go to the dark place. Tears always follow and the only person who ever sees that is my wonderful wife who picks up the pieces, puts me back together again and convinces me that it’s going to be all right, for now at least.

Then there are the really dark episodes when you lose the plot completely. One such nearly ending in a complete breakdown that was narrowly avoided by spending hours in tears with a case worker at the Neil Cliffe Centre and then several appointments with a therapist to get me back on track.

You also have to take stock and plan for the worst. Get your financial affairs in order, update the wills. In my case exit my business so I can get away from the stress, coping with cancer is hard enough without that. Selling my interests when the business was at a low value but I had to be away, I needed to live. Yes, cancer has a financial cost. How long will the money have to last? I’m no lower able to provide like I was, another aspect of my manhood taken away. How will Tracey survive/cope when I’m not here?

One of the hardest things is living with the bomb! You’ve got this thing inside you, the bomb. The fuse is lit but you have no idea how long the fuse is but you know, any minute, it’s going to explode. That destroys your mind!

Then we have the 3 monthly bloodsxiety. The next PSA blood test may be the one that says the treatment has stopped working and you know that the cancer has become castration resistant. Yes, that’s right, castration resistant. Has a ring to it doesn’t it? Mentally that feels like it’s the start of the beginning of the end. I’ve not got there yet but I’ve got friends who have run out of treatment options and now their only hope is drug trials. When will I be there? How will I cope? I hope I’m as strong as my friends who never cease to amaze me. They are an incredibly resilient lot.

Don’t forget that this shitty illness affects more than just the man. The impact on my wife and our relationship has been considerable. She has to cope with my mood swings, the times I’m down and depressed, when she has to see me cry whilst holding in her own emotions and be strong for me. She must think about me not being here and being on her own. Who helps her? How does she stay positive?

Even little things like travel insurance become an absolute pain. Our banks travel insurance will cover us for everything apart from anything related to the prostate cancer. 10 day trip to Europe, yes sir that will be £1262.50 to cover you! Thank goodness there are some sensible insurers out there but boy, you don’t need the stress of this on top of everything else! You then have to re-apply every year, no guarantee of continuing cover. If your health deteriorates during the year you have to tell insurers and they might decide that you are no longer covered so you weren’t really insured in the first place.

I know that, in the past, the PSA test has led to over diagnosis and over treatment. I know men have suffered erectile dysfunction and/or incontinence as a result of over treatment. But times have changed and diagnostic/treatment pathways have been developed that reduce risk of over diagnosis and over treatment.

One thing that is certain is that if you get diagnosed too late, when the cancer has escaped the prostate and you end up stage 4, then you start living my life! Do you really fancy that?

Published by Tony Collier

Diagnosed with stage 4 prostate cancer in May 2017 when I went from training for an ultra marathon to terminally ill in 36 hours. It was a pretty bad runners "groin strain"

19 thoughts on “Living with stage 4 prostate cancer, the bad bits!

  1. Such a detailed description of how this changes so much of your life. speaking from a wife of a stage 4 with Prostate cancer – the journey is so much the same as ours, but we have are a year ahead 21st April 2016 will be a date we never forget

    Liked by 1 person

  2. Hi Tony, thanks for this.

    I too have Prostate Cancer, NO, my wife, my daughter, my sons, my mum, dad we all have PC, well I have it but they all have to live with it.

    I am 52 and was diagnosed on October 4th 2019, Gleason 9, stage 4.

    Life expectancy on October 3rd, maybe another 30+ years with luck, life expectancy after diagnosis, ‘well the average is 5 years’ said the oncoligist, ‘but many people live longer’.

    Average 5 but maybe longer? Average….so that means it could be a lot less? Consultant says yes, 3-5 is a better indication.

    I cry, my lovely wife cries. How can this be. Fit young(ish), active chap young family. This can’t be right…can it?

    Turns out I am in a high risk group, my grandad died with PC. I didn’t know this, I didn’t know that this increased my risk of having PC dramatically.

    Testing would have helped to catch me, maybe catch my cancer as much as two years earlier, maybe even at the point where it was curable.

    But no testing, that’s it. I effectively have a terminal condition. My Cancer will kill me, probably way before I even reach 60. I won’t die with it, but of it.

    My daughter is 8. I am 52. I kind of got my head around maybe not seeing her get married, have children but now there is a
    chance I may not see her get to secondary school.

    A testing regimn could well have meant my daughter had a daddy to help her grow into a woman, to be there to hug and love her.

    I too am ‘lucky’ enough to be on Abiraterone and Hormone ‘Therapy’. These drugs whilst possibly prolonging my life have also stolen a substantial part of me. My wife and I can longer experience the kind of intimacy that most of the rest of the population takes for granted, I have wants and my wife has needs I can’t meet. The sense of grief that this creates is enormous beyond words.

    A testing regimn could well have meant that my wife coukd have had a ‘full’ husband, she loves me unconditionally and now I can’t meet one of the most basic requirents of a husband.

    My daughter is 8. We have had to find a way to tell her that daddy is ill, that it is cancer, that daddy is getting all the best treatment. She knows. She has ‘done’ cancer at Brownies. She has worked it out daddy isn’t going to be around as long as she thought.

    The cancer did this. It stopped me being able to keep my little girl safe. A proper testing regimn may have meant my little princess didn’t have to go through this.

    I was between jobs when diagnosed and now in the middle of radiotherapy. How on earth do I get a job right now? Cancer took away our ability to pay for holidays or run my car, a testing regimn might have caught my cancer when it was more easily treated or even curable. A test at the right time might have meant we could still have paid for a 9th birthday party for our little lady.

    Sometimes my wife’s guard slips and I can see the fear in her eyes, I can see how scared she is if the future, of how the cancer will affect me, my physical, mental and emotional health, of how she will cope when she loses me, of how she will support our sons and young daughter, how will she manage financially, emotionally. I can’t help, I too am lost. I can’t help her, I can’t take away the pain in her eyes because its me and my cancer that are the cause of the pain.

    This is the fault of the cancer but with testing and early diagnosis it could have been all so different.

    PC robs men and their families of almost all that could or should have been leaving incalculable pain and suffering in its place.

    I feel emasculated, unable to provide financially and emotionally, worse the drugs (that I am unbelievably lucky to be on) are changing who I am, turning a whingy, miserable sod into a fly off the handle, shouty, ratty, unreasonable git who is completely and absolutely knackered all the time.

    I am not the person I was only 4 months ago, and these changes are not for the better. How much more are the months and years of treatment going to change me?

    I know we will get better at all this, better at seeing the light in the darkness because pretty much everything gets better with the passage of time and practice. But right now it all feels, well, pretty crap!

    There is some good news… not much but my hair, its now so soft the women in my life call it baby hair. Oh, I’m at home all day for a bit so we had a new arrival….a dog who may well turn out to be our saviour, he is a bit moody like me but other than that has brought light into our lives that we had recently lost.

    Well that went on a bit.

    Until now I haven’t had the confidence to share much about my own short Prostate Cancer story publicly, your story has helped me to do that. Thankyou

    Liked by 1 person

    1. Wow, Andrew, that rocked me to the core. I though my blog was powerful but yours has taken me aback and I have so much empathy with your journey. The only thing I can say is let’s both ignore those prognoses and prove them wrong. We’ve both got to KOKO (keep on keeping on). Hang in there Andrew

      Liked by 1 person

      1. Thanks Tony, we are trying to ignore the prognosis, diet better, squeezing as much exercise in as possible but it can feel like wading through treacle with PC stealing something different from us every other day.

        We see the work that you do to raise awareness and appreciate if we had had an awareness we probably wouldn’t be where we are now.

        If we/I can do anything to help please feel free to get in touch.
        A.

        Liked by 1 person

      2. Very powerful accounts of how this terrible disease rips into our core as men ,husbands ,partners and our wonderful families who have to contend with this monumental challenge
        I feel very inspired by both these stories to spread the message far and wide and encourage others to fully understand the journey prostate cancer takes us on
        Warmest wishes to you both on your fighting courage to face this with a gritty determination to do what you can in the face of adversity

        Top Men

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  3. This is so true Tony. My husband is exactly the same. The tiredness has hit him the past few weeks and he has become quite ‘grumpy’. I can understand but hard to deal with. Our grandson who is 20 is staying with us at the moment as he is at uni and easier to be with us as they live in the country. He had a few drinks last night at his friends and came home really chatty. Dave was out at the pub. We somehow got on to talking about Dave and he said I don’t want to talk about grandads illness. I know he’s not feeling so well at the moment. I can see it in his face. He burst in to tears. This is such a shitty situation. I must stay strong for all of us but I must admit last night was a bit of a shock. He doesn’t need to be worrying about his grandad. 😢

    Liked by 1 person

    1. Can’t imagine how tough that is. My boys don’t understand yet, they’re only 6 and 19 months. The older one has been to The Christie with me twice so I guess he had an inkling. I’ll explain when I have to but not before. It’s hard when you love them so much

      Liked by 1 person

  4. Well done bud, you are a truly amazing advocate for awareness and I’m honoured to have you on my friends list. Keep up the good work and living every day to the max! 🦸‍♂️😎👍🙂

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  5. Found mine at age 41. Fully asymptotic.
    Lucky my GP did a digital and “thought” he felt something.
    Lucky they insisted I follow-up even though my PSA was only 0.8!
    Lucky I insisted on a biopsy rather than waiting for a change as the Urologist suggested.
    9 months on castration therapy, no longer a man.
    Lucky my surgeon did a good job.
    But parts come out, things no longer work, a huge change at 42 – 20 years before you had to deal with it…
    Overall, lucky I’m still alive.

    Best to you all.

    Like

  6. We are living the same life Tony.
    Diagnosed 22nd Feb 2019 stage 4
    PSA 1554.
    Hormone therapy, chemotherapy
    3 monthly oncologist appointments
    Living the very best life we can with our daughters/partners and grandchildren.

    Your words tell our story too.
    Thank you for sharing them 🥂🍾

    Like

  7. We are living the same life Tony.
    Diagnosed 22nd Feb 2019 stage 4
    PSA 1554.
    Hormone therapy, chemotherapy
    3 monthly oncologist appointments
    Living the very best life we can with our daughters/partners and grandchildren.

    Your words tell our story too.
    Thank you for sharing them 🥂🍾

    Like

  8. Thank you for your story. Your courage and honesty in speaking up is breathtaking and gives real dynamic to all those men, their partners, their families and friends who are all living with PC. Thank you once again

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  9. Hi Tony,

    I am so sorry that you are going through this.

    When I was diagnosed with PC (stage 2, Gleason 3+4 and radical surgery) I was going to keep it quiet like most men do. Then I did a 360 and joined Prostate Cancer UK and made a point of talking as often as I could. I too started a blog because I could not find the information about what I was going to go through.

    We all become experts in this and along the way I found out some shocking facts. One of the most troubling is a paper that cam out in 2011 and was issued to doctors telling them NOT to offer a PSA test to men that are not showing any symptoms. There will never be a national screening program because of the false negatives the PSA test throws up and the NHS could never afford it.

    We all hope that conclusive PC test will be around the corner.

    As we all know, in the early stages of PC you are ‘lucky’ if you have any symptoms that you can act on.

    My dad has prostate cancer but because he was not in my life I didn’t know I was high risk (other than being a black male). Luckily, I had a doctor that had not seen the paper or didn’t give a stuff about it. It was him that suggested I have a PSA test.

    Thank you for sharing your story. I can only hope my son and other sons will have better outcomes than we have.

    I salute you Tony.

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    1. Thanks Peter. It’s totally shocking that GP’s should be given such instruction. They are the bane of my life at my awareness talks! I’m told so often “it’s not worth doing as it’s unreliable” Thankfully the tide is turning with mpMRI scans and you may well see PCUK changing their policy on PSA testing this year and not before time. In the meantime all we can do is tell our stories, spread the word and support PCUK’s bid to find a robust test ASAP. So glad yours was caught early

      Like

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