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

  • 27 replies
  • 160 subscribers
  • 1412 views

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!

  • He’s had this done before and found it really painful so is already anxious about it, he has this habit of referring to himself as being daft and dismissing how he feels so ill endure they hear how uncomfortable it is for him if that’s the case again this time. Thanks again for your help.

  • The thing is is should not be painful being changed and there should be no pain when it's in day to day use.

    It sound to me as if there is another issue here - I had an indwelling catheter for 10 months without any issues. I think someone needs to take this up.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • I have attached some information on the supra pubic catheter. I am not sure whether dad would be eligible for it as hopefully his catheter is considered as a temporary measure until treatment can shrink the prostate and reduce the constriction of the urethra and allow him to pee naturally. 

    https://www.cuh.nhs.uk/patient-information/permanent-suprapubic-catheterisation-in-men-frequently-asked-questions/

  • Thank you, really appreciate it.

  • Hi Zoey88

    Yes please please leave it with me and I will get back to you!!!!

    Prostate Worrier.

  • Hi  

    I ended up with a catheter as my Prostate had grown and reduced my flow from my bladder. I was listed for a TURP operation where the Prostate is "shaved" increasing the flow (check with King Charles) and once this was done I was catheter free. Details of the TURP are in the link

    https://www.nhs.uk/conditions/tranIsurethral-resection-of-the-prostate-turp/

    I have a feeling dad may be heading this way.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Hi Zoey88 

    I have just noticed that Alwayshope has supplied you with the info which is great but if you need any further help/support please let me know??

    Prostate Worrier.

  • same stage as your dad told my cancer was very very aggressive 

    started on bicalutamide for a month , had a month zoladex injection after that .

    then started 3 monthly injections , had chemo  mine was a waste of time the cancer spread !!

    the radiotherapy was cancelled and i started on abiraterone daily 

    this was over 5yrs ago and i'm still doing some work as a self employed gardener 

    positivity and exercise are key imo 

  • Sorry another question from me, so dad had his PSA level tested last Wednesday. He started his hormone injection yesterday.  He’s been on bicalutamide for 2 weeks. He has just been given an app next week to meet with his consultant oncologist. This will be the first time he has met with his oncologist.

    what to expect? Will his find out if his psa level has dropped or not? And will they agree a treatment plan at this appointment?

    any advice and/or questions to ask at this app would be so helpful.

  • Hi Zoey88,Ask all the questions you like, we are happy to help, You should get your latest PSA results and the bicalutamide tablets will hopefully be having a positive impact and lowering it and now your dad's started the injections the PSA should come down quickly Treatment options will be discussed though surgery is unlikely, if your dad is still having problems with his catheter you should bring this up. Ask about what treatment options are being considered, are there other options available at other hospitals, how long for treatment to start and ask for all your dad' stats to help you understand and choose your options, and get a contact number for your oncologist, "probably their secretary" and your cancer nurse specialist's CNS, number too, best wishes.

    Eddie