Dad was just diagnosed with stage 4 cancer last week - prostate cancer which has spread to bones and lymph notes, Gleason 9.

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Hi, my dad who is 63 was diagnosed with prostate cancer in feb. He’s undergone a lot of scans and last week we met with his consultant who told us he has stage 4 prostate cancer. Back in Feb his psa score was 22 (it hasn’t been tested again since) and so his consultant has said he’s unable to get treatment unless his PSA levels come down, he is currently on hormone tablets and will have 3 hormone infections (each one month apart) if his results have come down in 3 months they will consider treatment. 

It’s such a shock that it’s all happening so soon as otherwise dad has always been fit and well. Recently he has struggled to empty his bladder and has had a catheter fitted which he finds so uncomfortable he describes it as feeling like a screwdriver up his bum and this more than anything has had such an effect on his life as he can’t sit down or can’t walk far so now rarely leaves the house all within the space of a few weeks, he’s had it removed and refitted but it’s made no difference. 

I feel like I have so many questions - I guess most of all I wondered if anyone was or had any loved ones in a similar position? I also wondered if waiting for PSA levels to come down was necessary before considering treatment as I’m just so worried about how aggressive the cancer is. I also wondered if people had any success with PSA levels coming down or if they had any further recommendations other than hormone treatment to help this? And also advice on how to help my dad get/be more comfortable with his catheter?

It all still doesn’t feel real - I feel like I’m watching it happen to someone else, I just feel so much for my dad and am so upset that his main priority continues to be my mam and me and my sister. Sending so much love to everyone else on this forum who are going through similar difficulties!

  • I also should have added his stage t3bn1m1b

  • Hi  , sorry to hear about your dad’s diagnosis.  It really does hit you when you first hear it, but I can assure you, things will get better once treatment starts.

    I presume he started on something like Bicalutamide for a few weeks and is now on monthly Prostrap injections.  If so, that is great and is exactly correct.  On this regime, usually his PSA would fall dramatically (although don’t panic if it doesn’t).  The HT he is having will already be preventing spread and indeed reversing the trend.  Until the HT has had a little time to work other treatments can’t start.  
    Any other questions, please fire away.  We have every sort of diagnosis and treatment experience across this group and I am sure others will be along to offer advice shortly.  If you click on the beach by my name you can see my story (so far).  Also, you can add your own profile, so that others can read it without having to look through all the posts.  Best wishes.  David

  • Hi  .

    A warm welcome from a wife whose husband was diagnosed stage 4, Gleason 9 almost 4 years ago and is still going strong. His has spread to both pelvic and abdominal lymph nodes but has been treated, allowing us to have a good quality of life.

    I'm sorry I can't help with the catheter issue but I am sure that someone will come along shortly to give you the benefit of their experience.

    David has answered your question on PSA, which usually (but not always) comes down rapidly once started. This will stop the body from producing testosterone which fuels the growth of the cancer cells and gives time to sort out a treatment plan tailored for your dad and is dependent on the type of cancer that he has. The drop in PSA can start shrinking the prostate but it is usually when other treatments like radiotherapy or chemotherapy in conjunction with the hormone therapy kick in that a greater benefit is found which may mean that the catheter can be removed. There have been great advances in both hormone therapy and radiotherapy techniques in recent years which means that advanced prostate cancer is now considered treatable for many years. I have attached an information sheet which will give you reliable information and has links to all the different treatments which might be used. Keeping dad as fit as possible is important as this will help with how well he copes with treatment, but it must be very difficult for him at the moment with his catheter issues.

    You say you have a lot of questions so please ask away. To date my husband has been through different hormone therapies, external beam radiotherapy EBRT, chemotherapy and yesterday he finished a different kind of radiotherapy. Our oncologist says he still has more tools in his toolbox if necessary further down the line so my best advice is to stay positive for your dad.

     https://prostatecanceruk.org/prostate-information-and-support/advanced-prostate-cancer#:~:text=Advanced%20prostate%20cancer%20is%20cancer,the%20bones%20and%20lymph%20nodes.

  • Hello   A warm welcome to our little part of the Community - I am so sorry to find you here.

    Yes, the diagnosis is such a shock and understanding Dad's diagnosis and treatment plan will help. He's got an aggressive type of Prostate Cancer which has left the Prostate and got to other parts of his body. It's treatable and we have Community members on the Community with a similar diagnosis who were diagnosed over 10 years ago and are still here.

    As  has said in his post above the HT (Hormone Therapy) will stop any further growth and spread and once his PSA is reduced further treatments can be considered. To help you understand Advanced Prostate Cancer I have put a link below to A cracking booklet by Prostate Cancer UK.

    https://shop.prostatecanceruk.org/our-publications/all-publications/advanced-prostate-cancer

    On a personal note I had a catheter for 10 months. They do take a bit of getting used to but after a couple of weeks I hardly felt mine. It's important to keep the area around the tube where it enters the penis clean (wash it everyday with cooled boiled water and soap). Ensure he always has 2 leg bag straps on (and they are behind the pipe not over them).

    We as a Community are all here for you - we have all "been there - done that" - although our personal journeys are not all the same we are all happy to help. Ask any questions - no matter however trivial - you will get answers.

    Best wishes - Brian. 

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  • Hello Zoey88 and welcome to the forum though sorry you have to be here. I understand you are worried and stressed out which is normal. As David2017 has said treatment is progressing normally and will have a big impact on your dad's cancer, PSA is usually checked every 3 months, so May should be the next one, my PSA dropped over 99% after 2 hormone injections and like your dad I am stage 4, your dad's main priority will always be his family and life being as normal as possible is a good thing, though you should talk to someone about his catheter as something needs to be done soon as when the next stage of your dad's treatment starts him being fit will help him through it, take care.

    Eddie

  • Hi Zoey88

    Good afternoon it's great to meet you today and welcome to the prostate family.

    Yes I was diagnosed last June last year at the age of 57 which came out of the blue.

    My PSA was initially 1000+ and I was put on HT (injections and tablets) and my numbers are now down to 0-2 which is crazy and at the time unthinkable.

    I am also a long term catheter user and like your farther I had constant problems including "screwdriver" felling on many occasions.

    Following a bladder scan back in June last year in preparation for a "Super Pubic Catheter" operation this is where my Cancer was detected.

    I have since had the operation & I now have the S/P Catheter fitted which goes through my lower stomach and straight into my bladder which makes catheterising a doddle & virtually pain free.

    Please please come back to me if there's anything else that I can help/support you with????

    Prostate Worrier.

  • Thanks for your help regarding the catheter issue. My dad has an appointment on 29/04 again to remove and refit the catheter so I have shared your story with him and he’ll discuss the possibility of a super pubic catheter then.  

    thanks to  too for the catheter advice I checked and this is how dad wears it but continues to have the issues.

    its all very reassuring to hear dad is on the right treatment for now and that it’s likely his PSA levels will come down with the hormone tablets and injections. You’ve all made me feel much more positive - thank you. 

  • Hi Zoey88

    No probs it's my pleasure!!

    Yes I had many A+E visits to have my catheter refitted.

    But time and again I was back in the same position (blocked and painful)

    Having the Super Pubic Catheter fitted wiped all of these out.

    Do you want me to provide you with some info on SPC's ???

    Prostate Worrier.

  • Hello   It's not a problem - we are all here to help - we have all been in that situation and know just how you feel.

    The catheter change on 29th should be pain free, you can feel the one being taken out and the new one fitted but it's an easy appointment. I would mention how dad's feeling about the catheter at the meeting as it should be pain free.

    Best wishes - Brian.

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  • Yes please that would be really helpful!