Will we be told how long is left?

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My dad was diagnosed with stage 4 prostate cancer sep 2020. He's been on hormone therapy but it's stopped working so is starting cabazitaxel chemo on Monday. 

The oncologist has used words like aggressive and mentally prepare but hasn't given us any timescales. I made the mistake of googling average life expectancy and its about 11 months.

Is there a rule on when they tell you or do we need to ask? I'm not sure my dad wants to know but for me, I feel unable to prepare. Everytime he has a hospital appointment and we get more news about failing treatments, I break down. 

I don't really know if a life expectancy would help but I seem obsessed with looking. I know it's not healthy and I want to just be able to enjoy our time but I work from home so I'm alone most of the time and my mind is running wild.

Dad is still so positive, or perhaps he's just putting on a front for us. It breaks my heart to hear him talk so positively when really, it's a grim situation. Bit I wouldn't want him being sad either! It's just so hard to get the balance between positivity and realism.

Any advice would be appreciated

  • Hi Shell

    Well done for reaching out, what you are feeling and experiencing is perfectly normal, and understandable.  I know that similarly to you, I always want to have all the answers, but sometimes they are just not there, and as you say, if they are would it help, especially when those answers may not be right. 

    My Dad was diagnosed with stomach cancer and was given a life expectancy of 1 year, he passed in three months.  My Brother in law was diagnosed with a secondary liver cancer and passed shortly afterwards and my husband was given 4 to 12 months prognosis back in May 2020,  he is fighting fit and still having treatment  - why am I telling you this, I think maybe to show you that what ever best guess life expectancy your Dad is given, is just that, it is a guess!

    One thing that is true though is that every day, we should live our best life, because the realism of this is that none of us know when our tomorrows may end, but we all know that at some point that will happen, to all of us! It will almost always be too soon, and I truly hope that you can pull yourself away from thinking about the end and help yourself to focus on the now, on the positives as your Dad is doing.  Make plans for the weekend, for next month, have fun together, make memories, because no matter how long any of us have got, the only thing that will be left behind is those memories. 

    Thinking of you 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hi Lowedal

    Thanks so much for your reply. You're absolutely right and I'm feeling a bit more positive today.

    Sorry to hear you've had so many loved ones affected by cancer. That's great news about your husband though, I hope he keeps on beating the odds. I'm sure your positivity is helping and treatments do advance all the time. We are hoping dad will be considered for immunotherapy which seems to have really good results.

    I'm not sure if it's denial or pretense for our benefit but my dad continues to make plans for the future and I've no doubt its keeping him going. I guess we can talk about other plans when we need to and should just enjoy the relative normality we have now.

    Thanks again for your support and best wishes to you and your husband x

  • I am not sure sure that it is either denial or pretense on your Dad's decisions to make plans, My husband has continued to make plans and we have taken holidays we never thought we would have, booked holidays that we are yet to go on. We even bought a tent and went camping, something Dal has not done since he was a teenager. 

    Some people fear and others fight, my husband and I suspect your Dad, are fighting.. fighting to have their best life, the only difference for them now is that they know it is unlikely that they will get a telegram from the "King" but everything else is possible. 

    If I have learnt anything from this, it is the strength that this blasted disease gives so many people, it opens the door for them to do things they have wanted to do, or dreamed about, which they probably wouldn't have done if they were not given a terminal prognosis.  Isn't it a shame that we don't all learn from that, live as if there are fewer expected tomorrows and throw ourselves into life. 

    I wish you Dad all the best with the plans he is making and hope he stays well for as long as he can 

    Take care of you. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hi

    Thanks so much for sharing your story.

    We're in a similar situation and I can really relate to how you're feeling.

    My father-in-law was diagnosed with stage 4 prostate cancer in April 2021. He was extremely poorly at the time and we weren't even sure he'd last the weekend. He went into hospital and the medical team were fantastic and realised he had a clot on his lung, which was causing him to be so poorly.

    He started hormone therapy immediately and underwent three months of chemo last year. His PSA levels came right down and we were all feeling very positive. Now, his PSA levels are climbing rapidly and his consultant is discussing alternative treatment and tablets to try and keep things under control.

    In the meantime, my FIL remains upbeat and positive, booking holidays and trying to do as much as possible while he feels well. We live a six hour drive away and I am trying to convince my husband that we should move closer to him so we can enjoy whatever time he has, especially as my daughter adores him and they have a really special relationship.

    My husband is scared and I think probably a little in denial about the prognosis. But as you say, it's really difficult to come to terms with it all when there's no clear life expectancy. We switch from being super upbeat and assuming he's still got many years to enjoy, to feeling terrified that things are going to get worse quickly and we won't make the most of our time with him.

    My husband's mum died of cancer when he was young, and he barely remembers her. I don't want my daughter to have the same experience and hope we can create many more memories of grandad for her to keep.

    Anyway, sorry it's a bit of a ramble. Thanks for sharing and hope you manage to get some clarity or peace on the situation X

  • Hi everyone! I read all the conversation this morning and thought I would join in as it is really positive but also realistic. We too have had cancer in the family (as most people have), my sister in law died with lung cancer six weeks after diagnosis, my father in law died of bowel cancer three months after diagnosis, my brother in law died of stomach cancer nine months after diagnosis. My husband was given two to three months if he didn’t receive treatment, nearly two years later he is still with us. One of the specialist nurses gave us a bit of advice, she said ‘don’t let Multiple Myeloma take over your lives, put it to the background and live’, we listened…… After a year of very intense treatment, which there’s no denying was incredibly stressful, we decided to live our life and create as many memories as we could, so we bought a caravan and have been having a wonderful time all throughout this year, going to different places, seeing beautiful scenery everywhere and enjoying ourselves. We have friends and family join us for days and we chat, laugh and have fun. 

    When the day comes, which it will, I will have the most special times stored in my head and lots of photos to look at to help me remember happier times. Life is for living and we intend to enjoy as much of it as we can. Thank you everyone for all your encouragement and support, it makes a difference. Love and hugs to you all Sparkling heartKissing heartHugging

  • Hi Shell, very much in the same boat here. My dad has late stage prostate cancer which spread and is receiving palliative care. He hasn’t asked for a prognosis or time scales as he doesn’t want to know, which I totally respect, but I feel in limbo not knowing whether he’ll go on for years or whether it could be weeks ir months. Some days/weeks I’m able to carry on and not worry too much and other weeks I feel paralysed with worry. It is so difficult living with the unknown. Hope you are doing ok xx