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

  • 27 replies
  • 164 subscribers

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!

  • Hi again  , like Eddie has said PSA should be down, but depends how long ago he had his bloods taken.  Don’t panic if they aren’t low as long as they aren’t increasing.  At the meeting you should get some idea of the initial treatment strategy, but again don’t worry if they talk about ‘in a few months time’, as the HT needs to work first.  Your natural reaction is to want things to happen immediately but in reality it would be wrong to start treatment too soon.  Good luck on Monday, David

  • Me again! Sorry! Dad had his app with the consultant oncologist today and needs to make a decision by the end of the day whether to do chemotherapy and radiotherapy together or do chemo, radio and hormone treatment (oral) all together. This will take place over 2 weeks so will be quite intense. The consultant did initially recommend all three. However later in the app said maybe to start with radiotherapy and chemo and then leave hormone tablets as a further tool in the bag. He will continue with 3 monthly hormone injections regardless 

    Dad was initially on hormone tablets and has had his first hormone injection.

    The consultant to our surprise said he didn’t have the results of dad’s psa! So we’ve been trying to contact his care co ordinator for this information.  

    Does anyone have any experience or thoughts you could share regarding the treatment options?

  • Hi  .

    It sounds as if they are going to treat your dad's cancer with hit it fast and hit it hard. Can I suggest you listen to a new video on one doctors latest thinking on this protocol.

     Advanced Prostate cancer with high PSA. 

    Was your dad told what type of radiotherapy he is going to have? Is it to the pelvic area including all lymph nodes or is it to the bone mets. Is the Chemotherapy the 6 or 10 cycle protocol. How aggressive is your dad's particular type of prostate cancer -Gleason 9 only tells part of the story. If dad has a particularly aggressive form then throwing the kitchen sink at it may give him a better chance at total remission, even if he only stays on the additional hormone therapy for a short period of time. Some cancers are particularly responsive to radiotherapy, others to the Chemotherapy. Chemotherapy works at shrinking tumours quite quickly but you need the full course which can take 18+ weeks to be fully effective. Radiotherapy works over a lot longer period of time if it is EBRT - anything up to 18/24 months. Faster if it is SBRT. In the meantime the injections lower the testosterone but there is more effective control if it is combined with a 2nd generation antiandrogen. The disadvantage of staying on hormone therapy is that resistance can build up. There are several different types of hormone therapy so it is important to find out which one is being proposed and for how long as some of the hormone therapies can be used sequentially, and others can't.

    I know it hasn't given you any answers but please come back if you have any questions.

  • Hi Zoey,

    My OH was given full on treatment early on last year=. Zoladex/Abiraterone and full pelvic RT, nodes and lower ribs included. Not Chemo,. The hard hitting early on approach seems to be the thing and there seems to be some excellent combinations available. 

    It sounds like dad is getting excellent treatment.

    * Ive just noticed you ask the question about PSA coming down. My partners PSA held steady at 9 for a while and then he had Abiraterone that seemed to force it down within days. Read my profile of his treatment, remember everyones treatment and journey can be different and it's just added knowledge ( which you must be an expert by now )  

    Let us know what he picks. 

    Best wishes


  • Thanks for your help, 

    im not sure on any of the answers to your questions  other than t3bn1m1b and 6 cycle chemo. 

    Just read your profile   thank you. We’ve gone with the 3 prong approach - chemo, radiotherapy and oral hormone tablets aswell as the injections every 3 months!!

    thanks so much for taking the time to respond really appreciated!

  • All will become clear as time goes on. If you need any information about the different treatments and what to expect then we can help as many of us have trod this path with our loved ones.

  • Hi Zoey,

    It sounds like an excellent choice, Ok hand