Dad with Stage 4 cancer (in pelvic bone and hip)

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Hello lovely community

this Will be my 2nd post and I’m coming here as I’m back in a dark place again. I wasn’t sure where else to turn and I’m not finding talking therapy useful right now.

My dad’s diagnosis was 2 months ago and he is doing well, and due his 2nd injection the end of this month. He does however have back pain, which is upsetting. He thinks this is because he’s due another injection.

For context, he has advanced prostate cancer but it is an aggressive form. I can’t remember the exact Gleason score but I believe it is an 8 or 9. This causes me great anxiety, but can he be classed as oligometastatic if he’s only got spread to less than 5 areas? Only bone - no soft tissues at this time.

The good news at present; his PSA went rapidly down from near 100 to 5! This was in November. This is clear that he’s responding well to treatment, but why is he in such pain?

I was doing okay following the shock, but I think the distractions and busy period of winter helped, now I’m back in a very dark and upset place.

I appreciate all the kind replies on my first post - and sorry I didn’t reply to everything at the time. I had to stop obsessing over researching 

X

  • Hello  

    Thank you for your post, and i am so sorry to read about you and dad. Let me reply in 2 parts:

    DAD:

    The Hormone Therapy has now "put the cancer to sleep". It can cause joint or muscle pain and you need to ask his team about this one. Is there any pain relief for it and is it this particular HT drug - there are plenty of alternatives.

    As the Cancer has spread and only in his bones, has his team indicated what they intend to do regarding this spread?

    YOURSELF:

    We have plenty of support available and you said

    I’m not finding talking therapy useful right now.

    In that case I would urge you to have a word with our Support Line, it's there for all the family, on 0808 808 00 00 (8am to 8pm 7 days a week) if you talk to them about your fears and issues they have plenty of resources to help you.

    I do hope the above helps - if I can do anything else for you please let me know.

    Best wishes - Brian.

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  • Hello  . The good drop in PSA shows that the hormone therapy is doing its job. The injections are designed to last for the whole of their term so I doubt that the symptoms your dad is experiencing are due to coming towards the end of the time period. What can happen is that as the testosterone drops some men experience additional pain initially which over the counter painkillers can usually help with. If your dad is due to have another injection at the end of the month then it might be an idea to ask for a blood test to include testosterone which will confirm that the hormone therapy is working and he has reached the castrate state with the ideal target being below 0.7 in the UK. If your dad is struggling with the pain then something stronger might be prescribed by the GP. Occasionally men have a problem with a particular hormone so he needs to speak to his team to see if it is a reaction to the drug ( in which case an alternative would be prescribed) or whether it is a temporary side effect. 

  •   the others have given you good advice.  Is your dad in contact with a Cancer Nurse Specialist (or does he have their phone numbers). I found them to be an extremely useful first stop.  Out of interest, does the pain correspond to where the bone mets were found?  Best wishes, David

  • Hi  

    Unfortunately I have found myself in the exact same situation as you over the last couple of months. My Dad has also been diagnosed with PC that has spread to his bones (pelvis and ribs) and it came as a complete shock to us all. We are still waiting to see the oncologist later this month so I can’t offer the same insights as the others but I  just wanted to drop a quick message as I have also been struggling and it can feel so scary/isolating at times. I hope both you and your Dad are feeling better soon x

  • Hi Distraughtdaughter 

    Read your post, I presume he’s had chemotherapy and radiotherapy? I ask this as it’s usually common practice for stage for suffers, remember you can go with your dad to appointments even if your mums there.

    Worrying is something all families do, my wife is petrified about me just going to the loo in case I fall bless her. Being positive for yourself and your dad is so important, it’s half the battle, these medications can run havoc with your daily routine, I rest until 11/12 every day, I have a portable dvd player I watch lots of films and series on, or I have a tv in the bedroom.

    Try to keep in a happy place, if you need to talk to someone, we’re always here, or if there’s a Maggies near you a tea or coffee and a biscuit plus a very sympathetic ear always helps.

    Stay Safe

     Joe

  • Hi there,

    Firstly, sending all my love to you and your dad too. I’m sorry for you both that you also found yourself here.

    i really appreciate your message and kind words, it really is so terrifying. Whilst I can’t offer you much advice quite yet medically, my inbox is open to chat.

    I try to focus on how treatable this is, even though it’s advanced.

    Hugs x 

  • Hi Dstrautdauter

    Pain can be dealt with by your doctor, I take co cdormol two tablets four times aday, if the pain increases I have a back up of morphine, this I have ny used once.

    Myself I have had incurable PC for eight and a half years, lots of scans and assorted medications, ok they can take a toll on the body, but kept me going for this lng.

    Its very hard dealing with all what s happening, but you have friends here, always willing to chat about any topic, your not alone people have been through simuler to what your experiencing, so talking is good.

    Stay Safe

    Joe