new diagnosis

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hello

My husband aged 58 found out last  new year's eve  he had prostrate cancer. Sheer chance this was discovered as took it upon himself to do a psa blood test organised by a local charity group and things moved on very rapidly from there . Found out last Thursday that it is not curable. Grade 4 and Gleascon score 8 (4+4). been told surgery not an option as has spread to lymph nodes higher  then just the ones by prostrate. has a pep scan next Tuesday to see how far it has spread - trying to keep positive about the result but dreading it  and can't stop thinking the worst.

As to treatment  been told at present only Hormone Treatment  and he  is going to be started on Bicalutamide. After 2-3 weeks he will then have  injections but don't know what the name of the injections he will have.

From what I have read there are what they called second generation drugs for hormone therapy and I was just wondering why we have not been given a choice as to which drug he starts on.  Obviously we want to do all we can to slow the growth and live an active life as possible.

have  questions to ask the urologist cancer nurse but any input anyone can give about treatment would be much appreciated.

Sorry if this a bit  of a ramble but so much to take on and not  got my head around this diagnosis as my husband has absolutely no symptoms. 

thank you for taking the time to read this

Taz

  • Good morning  ,

    your post was not a ramble like me a very concerned partner . My OH (husband)   aged 73 was diagnosed last March with PC  and also has lymph node involvement and can’t be cured .

    However, we met the oncologist two weeks ago and he is happy that his PSA  is down to 0.1 and below at times . 

    He was on Bicalutamide for 21days and now has 12 weekly injections of Prostap . He also takes Aberaterone  and prednisone daily. 

    OH finished a 6 week course of radiotherapy ( once a week) to the prostrate & seminal vesicles recently . He walked ten miles a day until he injured his leg but out walking with his crutches and managing to get  mobile again. 

    this group have been amazing and will answer your post . Please keep asking away as I see it as being therapeutic for us watching and have no control .
    Take Care & Best Wishes 

    Liz & OH xx

  • Hello  and welcome from a wife whose husband was in a similar situation to you in July 2020 and he is still going strong. Don't do too much googling at the moment because you will end up going down a rabbit hole. The Bicalutamide is the first HT to prevent the flare caused by the injection. This will put the breaks on the cancer no matter where it is in the body and gives the experts time to do all the tests and find out what kind of prostate cancer your husband has. What treatment he will be put on is determined by many factors but be reassured even stage 4 is TREATABLE and can be for many years. The second generation antiandrogens come in different forms and it can make a difference to outcomes if they are given at the wrong time e.g. if your husband is going to have chemotherapy it is better to start it at the same time as the second generation antiandrogens. If he is going to have radiotherapy then the hormone therapy is used to shrink the cancer for a few months so that there is a smaller target and less collateral damage. Other types of the cancer react well to HT on its own. Basically there are too many unknowns until all the tests have been done.

    It might be useful to start putting what information you have on your profile if you are comfortable doing this and it helps us to give more targeted information. Please feel free to ask as many questions as you like and someone will always get back to you. Talking is good.

    Encourage your husband to get aa fit as possible particularly with weight bearing exercises as this does help mitigate the side effects of the different treatments. Also make sure you look after yourself as you are an important part of the team.

  • Good Morning Taz  ( 

    A very warm welcome to the Macmillan Online Prostate Community, although i am so sorry to find you here. I a, Brian one of the Community Champions on the group. I am just starting my 4th year of my own Prostate Cancer journey.

    Yes you are right - there is a fairly new approach to tackling Stage 4 Prostate Cancer called "Triplet Therapy" which is working well. Here's the link to it Prostate Cancer UK - Triplet Therapy. However you won't be started on this until all the diagnostic testing has taken place,

    For now the Hormone Therapy will put the cancer "to sleep" whilst his team complete all the tests to work out the best course of treatment.

    Feel free to ask any questions here, however trivial and stick to trusted sources for your own research.

    Best wishes - Brian.

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

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  • Hi  , think the others have given you a good starter but until the results are known, everyone is in the dark.  It isn’t a nice place to be, but it will get better once you know the diagnosis.  I started over 7 years ago and am not curable, but treatable and still here!  New treatments and drugs are coming along all the time.  David

  • Hi  

    sorry to find you here , but there is a lot of support and you’ve found the right place. Firstly, everyone’s cancer is different and can be treated in different ways but it always good to question why your husband is having the treatment they suggest and what else is available. If you want to click on my profile I have listed my husbands medication and journey so far It may be of help? It will help you form questions about treatment options when you sit down and have a meeting with your consultant. 
    Mr BW is fine , he’s two years into treatment and doing very well. I see a future and it’s far ahead. Try not to panic at this stage as the treatment available is very effective. 
    best wishes to you both 

    Lorraine 

  • Hi taz68,

    Don't want to duplicate what has already been said but my OH's PCA was discovered in July 2021. Initial psa was around 1200 and immediately put on monthly injections, initially Degaralix, which very quickly brought down his psa to an almost acceptable level. However, he found the injection site was too painful each time, so was changed to Prostap every three months which he tolerates well.

    His cancer had metastasised (spread) to his bones and when his psa started rising again last year, they put him on Bicalutamide. Unfortunately, after a short drop in psa readings, it has started to rise again and so they have removed that treatment. He has many other health issues, and we keep saying he is better than a cat, seemingly having more than nine lives. At one stage, and during one of his many hospital visits, he had Covid, a Uti and sepsis all at the same time and got over that lot, albeit slowly. It knocked him off his feet for four weeks but after a period of rehab in Oakham hospital, he gradually got his strength back and was able to walk with a stick.

    He is not a candidate for chemo due to heart problems, and last August (clearly missing his hospital food) he had a stroke and was back in Peterborough hospital. Another six weeks in hospital and he is back with us. The cancer itself does not seem to cause him any problems, it is his general health which causes us concern. We are awaiting a nurse to take a psa blood test so the results can be sent to the Oncology consultant, in time for his appointment at the beginning of March.

    I am surprised that the first option for your husband was not injections, but both Bicalutamide and Prostap will lower the testosterone which is what this particular cancer needs to thrive on. Not sure I have helped at all, but just to say that even with a Grade 4, non curable PCA, men can be treated successfully for many years.

    Gina

  • thank for so much for taking the time to reply. I am pleased your husband is doing well.  It gives one hope. it so early for us and hard to get our heads round. 

  • Thank you for your very helpful response. your right about googling - really not the best thing to do. as you say until all results are in it hard to know which way this is going but hard not to think the worst- sorry. please to read your husband doing ok

  • thanks for your helpful response and I wish you well with your cancer journey.

  • sorry to hear of the tough time your husband is having but certainly sounds as if he is a fighter. good luck with it all and thank you for your helpful response.