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User
Posted 31 Jan 2018 at 18:21
Dad just back from oncologist. Told him it’s spread to bones and he has just three month to live. Dad is totally devastated. I just don’t know where to turn for help. PSA only 16. Can’t understand how we’ve got here so quickly. Please help me x
User
Posted 31 Jan 2018 at 19:41

Oh Pen I am so so sorry to see your dad's prognosis.

I can really understand that dad is devastated as must you be.

Was any help offered as far as counselling is concerned, is he in pain. Was hospice pain relief mentioned ?

We can't control the winds - but we can adjust our sails
User
Posted 02 Feb 2018 at 18:31
So I saw Dad’s GP this morning and he’s put in a Macmillan nurse referral (such a relief). She will advise and help with anything. We then received two letters in the post, one for end of this month (chemo nurse checks) then an onco one for mid March. Much panicking because we thought the chemo was to start 7-10 days which is what Dad was told. So I went over to the centre and after a good old weep at the desk I was put in touch with the bookings department who told me those letters were standard appointment letters and Dad is due a phone call early next week with a view to starting chemo on Friday. I’ve also called the Macmillan support line and PC UK. I am now in my pjs under a blanket as I can do no more today.
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User
Posted 31 Jan 2018 at 19:41

Oh Pen I am so so sorry to see your dad's prognosis.

I can really understand that dad is devastated as must you be.

Was any help offered as far as counselling is concerned, is he in pain. Was hospice pain relief mentioned ?

We can't control the winds - but we can adjust our sails
User
Posted 31 Jan 2018 at 20:50

Hi Pen. How awful and I’m so sorry for all of you. I don’t understand however that a bone spread has led to such a stark prognosis. It is normally soft tissue spread that causes rapid illness. Many many men on this site have bone spread and have survived many years !!

User
Posted 31 Jan 2018 at 21:32

I agree with Chris, this doesn’t make much sense - there are so many treatments that would usually still be tried. Did the oncologist explain why he wasn’t offering chemo, abiraterone or enzalutimide or something like that? Perhaps Phone the PCUK nurses tomorrow morning for some advice?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Feb 2018 at 06:33
It’s in bones and lymphs I’m not sure if anywhere else. Offered chemo but really not strong enough mentally or physically. Wants to try Abiraterone would that help in any way at all? X
User
Posted 01 Feb 2018 at 07:25
What support can we access and how do I get it? X
User
Posted 01 Feb 2018 at 08:23

There is information missing. It might be that the cancer has spread further than dad told you, or he has agreed with the onco that he doesn’t want any other treatments? With his consent, the onco might agree to speak to you. Has he been referred to a hospice or palliative care team? If so, you might be able to get more information from them. Could dad have misunderstood?

If he only has a few months to live, he is entitled to payments from the government. The hospice or a Macmillan nurse can help him fill in the application forms - the money can be used to buy equipment he might need or to pay for night sitters if he chooses to stay at home at the end. Macmillan or the hospice staff will also help you as a family talk about any arrangements like how your dad would like the end to be.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Feb 2018 at 12:07
After a long chat Dad has decided to give chemo a go. What is the purpose of having chemo if it’s spread and is this a better option than going onto Abi. What is the difference can anybody help me to understand?
User
Posted 01 Feb 2018 at 13:25
Oh Pen I'm sorry to hear this. On 2nd October we saw dad's consultant who said he wasn't strong enough for Abbi or Chemo and his cancer was very aggressive. He died on 16 January which was around 3 months so that's probably why your dad has been told that. But your dad has a choice to have chemo and possibly Abbi which may give him much longer. I really do feel for you as this is such a horrible time. I do hope further treatment prolongs his life as long as he has quality. Best wishes xx
User
Posted 01 Feb 2018 at 17:01

PenP,. Your Dad has a systemic complaint which needs to be tackled systemically. Docetaxel is often quite a benign chemotherapy treatment and can be taken in up to ten cycles usually, though a chap on here is on his 13th, I think. It is often very effective at zapping mets all over the body. The option of abiraterone is a good one for follow up. I found this a doddle and it gave me nearly three years. The name of the game is survival time, gaining as much as possible, given that a cheeks highly unlikely. By the way, I would treat that three months forecast with a bucketful of salt. Nobody can possibly say how an individual's body will cope with PCa. I hope your Dad is a fighter for both your sakes.

Good click

AC

User
Posted 01 Feb 2018 at 17:13
Oh Auld Codger THANK YOU. Thank you. I am following your journey I think you are in the same are as me (Coventry). You have lifted me tonight. I wish you all the best. Thank you to everyone else that replied. I’ve not replied individually as I would normally as I’m not quite with it today xxx
User
Posted 01 Feb 2018 at 18:13

I really hope that AC is not giving you false hope - did you take the advice given and contact the specialists today to clarify the situation? Or speak to the hospice team?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Feb 2018 at 18:25

My apologies for not spotting in my previous post that "cure is" had been corrupted by predictive text to "cheeks"! I too hope that nothing I wrote provides false hope. An opinion from me is worth nothing compared with your Oncologist's expert advice!

AC

User
Posted 02 Feb 2018 at 18:31
So I saw Dad’s GP this morning and he’s put in a Macmillan nurse referral (such a relief). She will advise and help with anything. We then received two letters in the post, one for end of this month (chemo nurse checks) then an onco one for mid March. Much panicking because we thought the chemo was to start 7-10 days which is what Dad was told. So I went over to the centre and after a good old weep at the desk I was put in touch with the bookings department who told me those letters were standard appointment letters and Dad is due a phone call early next week with a view to starting chemo on Friday. I’ve also called the Macmillan support line and PC UK. I am now in my pjs under a blanket as I can do no more today.
User
Posted 02 Feb 2018 at 18:54
Look after yourself Pen. This disease is so hard on us loved ones too. You are doing your dad proud.

Ann

User
Posted 02 Feb 2018 at 18:57

You've done what you can, and splendidly too.

I'm sure dad appreciates it.

Like Ann say, now you have to look after yourself

We can't control the winds - but we can adjust our sails
 
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