Psa - alternative treatments and timescales

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Evening all.

we are very new on my dads journey for prostate cancer.

his psa appears incredibly high over 4000 and he has decided chemo is not for him. We know it has spread to his lymph nodes, both arms and hip.

I respect his decision but we have young children with additional needs in the family who we need to explain this too but I feel i don’t know what the path ahead will look like or if we are talking weeks, months or years. 

id be greatful for any guidance.

  • Hello  

    A warm welcome to the Macmillan Online Prostate Community, although I am so sorry to find you here. Yes a PSA of over 4000 is very high, but not too uncommon sadly.

    I understand Dad not wanting Chemotherapy - although it's got better in the last few years, however like you I respect his decision. Do you know if he has been offered any other treatment - 1st or 2nd generation Hormone Therapy or Radiotherapy?

    As to a time scale - well I don't agree with that - we are all individuals, we have other issues as we get older and we all react to a diagnosis and treatment differently. I would look to the present and enjoy your dad's company and make memories and enjoy his life with you and your children.

    As to your children, yes it's hard to tell them in a way the understand. Here's a link that may help you with this subject:

    CANCER - Talking to children and teenagers.

    Should the situation arise (and I hope it does't) I have links to preparing children for a loss in the family.

    Stick with us, keep us posted but keep asking questions, we are all happy to help.

    Best wishes - Brian.

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  • Good evening  . I am sorry to hear about your father and it must be very difficult for you to accept that he has chosen not to have a therapy which could help prolong his life. Hormone therapy on its own can be effective for a while, particularly with some of the newer drugs on the market but how well will depend on how the cancer reacts to them and how well your father copes with it. Do you know what drugs he has been given? A prognosis is difficult because of this. Many men fear chemotherapy, my husband did, but things have moved on to ensure that they can still have a good quality of life whilst undergoing it. Another option could be radiotherapy particularly if he starts experiencing bone pain. For you the best thing to do is to encourage your father to try and get as fit as possible as this helps dealing with the side effects of the hormone therapy. Enjoy your time together now and don't put off doing things as a family.

    Ask any questions no matter how trivial they might seem and we will try and help.

  • He is currently on bicalutamide 50 mg for 28 days and due a hormone injection.

    he has decided radiotherapybis not for him either.

    he has mentioned alternative therapy, something about an antibacterial drug but I can’t seem to find what he is talking about.

    dad dosnt believe in vaccinations/covid so we were prepared he may not choose chemo.

    he is pretty sedentary, sleeping 16-20 hours and very little activity. He is struggling to make a step into the garden and dosnt Leave the house no matter how much we try. (-hospital appointments) 

  • The Bicalutamide (first generation antiandrogen) is the first stage of the hormone therapy to prepare for the injections and prevent the flare that these can cause. There are different types of injections which stops the body from producing testosterone which the cancer feeds on. Unfortunately fatigue is a side effect of this therapy. You need to find out if he is also going to be given tablets called second generation antiandrogens as these have been shown to give better suppression but they can also come with more side effects.

    Alternative therapies need to be cleared with the medical team, along with any supplements he might be taking as they can interfere with how certain drugs work.

    Sleeping for a long time is not a good sign. How old is your father?

  • He will be 76 next month

    he has not mentioned a 2nd set of tablets. He has agreed on the injection but refused a biopsy.

    18 months again he was building sheds and decking and now he’s bed to sofa to garden. 

  • To be honest a biopsy is probably not necessary as they know that the cancer has metastasised to distant parts. At 75 he is still considered young enough for most treatments if he would accept them provided he doesn't have any co morbidities which preclude them. Advanced cancer in itself can cause the fatigue so maybe once the hormone therapy removes the cancers food he might start feeling better. As I said before, some treatments are time dependent, particularly Triplet Therapy (HT tablets+ injection+ chemotherapy) which is the latest protocol for widespread cancer but it must be started within 12 weeks of first HT.

    The HT does come with side effects so let us know if there is anything we can help with.