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Please help me understand dad's prognosis

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User
Posted 20 Jul 2017 at 09:06
My dad was diagnosed with advanced prostate cancer in June 2016 with a psa of 406. Forgive me if my figures are vague but dad has chosen to keep most things from his wife and three daughters, preferring to do this on his own. I'm not sure how much he understands as he is vague when we try to press him for details. However it is he who is ill and we have to respect how he wants to deal with it. He is 75 years old. He started hormone treatment immediately on diagnosis and his psa was 1.8 in November 2016. This rose to 146 in May 2017 so he was put on bicalutamide. In June his psa had risen again but he said the urologist did not give him the figure. I don't believe that. He has been told he is not fit for chemo abbi or Enzo as he has coronary heart disease. He wasn't eating and looked really bad so was admitted to hospital and given a blood transfusion which improved things. He has been put on dexamethasone and has a further urology appointment on 2 October. My two sisters have turned into pollyanna and keep citing men who have lived years since diagnosis. Having been a member of this forum for a year I realise that others have taken 4 to 7 years to get to the same stage as dad. I know I can rely on the members of this forum to give me the, probably brutal, honesty I need. Is there anything I can do to help dad at this stage. I feel as though we are sitting back and letting him fade but he doesn't tell us anything. In his own daft way he is trying to protect his little girls , who are all in their fifties! Sorry for the rambling post

Edited by member 20 Jul 2017 at 10:11  | Reason: Not specified

User
Posted 20 Jul 2017 at 10:53

I'll be practical and honest as you've requested.

I've been through first line HT (Zoladex and Bicalutamide), second line HT (Enzalutamide) and Docetaxel chemo. I asked my Oncologist what she had left in her box of tricks. She said:

Cabazitaxel. Mitoxantrone. Stilboestrol. Radium 223. Dexamethasone. Bisphosphonates. Trials.

The first two are chemo treatments so they're out for your Dad. He has been put on Dexamethasone. That leaves:

Stilboestrol (HT), Radium 223, Bisphosphonates and Trials.

Edited by member 20 Jul 2017 at 10:55  | Reason: Not specified

User
Posted 20 Jul 2017 at 13:04
Would it be worth calling in to the Mcmillan centre there should be one in the hospital and talking to someone? Is there a designated Mcmillan nurse allocated to your father, his wife should be able to find that out. I suggest telling the problems of non-communication with your father the nurses are very skilled in getting people to talk about end of life issues with people.
User
Posted 20 Jul 2017 at 17:49

If the PSA is still rising - a gap from May to October for the next appointment does sound very long. I would second trying to speak to someone at Mcmillan.

Re the person saying : 'people live with it for years - he'll probably die of something else' could you say something like 'I think you are thinking of standard prostate cancer - my dad has advanced prostate cancer which is much more complicated and has a different prognosis.'

 

User
Posted 20 Jul 2017 at 22:29
Hello Scabbycat I just read your post, I am so sorry you do not feel armed with all the facts regarding your Dad's diagnosis. I am in a similar position to you unfortunately as my lovely Dad also has PC (advanced). The day I found out back in February I telephoned the nurses attached to this site and they have been a lifeline ever since. I think I've called about nine times now, sometimes when I've needed the support emotionally and sometimes to ask specific information about Dad's treatment. I really cannot recommend calling them enough. The support they have given me as a daughter has been invaluable and at times has been of great comfort. I am thinking of you and sending much love xxx
User
Posted 26 Jul 2017 at 22:04
My dad was diagnosed with advanced prostrate cancer in July last year. Hormones didn't work, aribiterone didn't work for more than 3 cycles and now he is waiting for dental treatment so he can be approved for bone injections. It's absolutely heartbreaking watching him fade away and being in so much pain.

Please contact Macmillan as they are amazing! Hospitals can tend to leave you hanging between appointments and Macmillan definitely fill in the gaps.

Sending hugs

Bee xx

User
Posted 02 Oct 2017 at 19:34
Sorry to read that your dad is no longer getting treatment.

I hope your dad gets all the support he needs to keep him as comfortable as possible and that the rest of the family is supported too. Sending love to you all, Ian.

Ido4

User
Posted 02 Oct 2017 at 22:31

I'm so sorry to see this update. I hope you are able to spend some peaceful time with your dad while the medical teams make him as comfortable as possible. Make sure you take care of yourself x

User
Posted 03 Oct 2017 at 14:15

So sorry to hear this. At least you and your sister were there and heard the information. I do hope he gets really good palliative care. Take care of yourself and also your Mum.

User
Posted 03 Oct 2017 at 14:52

So glad that you were able to be there with your dad when this devastating news was given and hope that the palliative care team are already there for all of you. They can provide counselling right now, as well as offering the practical and medical support that you need. Most of all, they really understand what lies ahead of you and what options there are at each stage. With their help you will find the strength to cope with this frightening journey, and to make it as loving and calm as it can possibly be.

I would urge you to say all the things that you want to say to your dad, however hard it is to acknowledge what's facing him and you. I think we often leave it too late, trying to appear positive and not wanting to show our sadness. Or just overwhelmed by the practicalities of caring for someone who is dying. But we can never show/say 'I love you' too often. In so many ways that's all there is and all that matters.

Much love to you.

Ruth

xxx

User
Posted 03 Oct 2017 at 15:17

Thinking of you all scabbycat, XX

We can't control the winds - but we can adjust our sails
User
Posted 03 Oct 2017 at 23:05

HUGE HUGS Scabbycat xx

 

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User
Posted 20 Jul 2017 at 10:53

I'll be practical and honest as you've requested.

I've been through first line HT (Zoladex and Bicalutamide), second line HT (Enzalutamide) and Docetaxel chemo. I asked my Oncologist what she had left in her box of tricks. She said:

Cabazitaxel. Mitoxantrone. Stilboestrol. Radium 223. Dexamethasone. Bisphosphonates. Trials.

The first two are chemo treatments so they're out for your Dad. He has been put on Dexamethasone. That leaves:

Stilboestrol (HT), Radium 223, Bisphosphonates and Trials.

Edited by member 20 Jul 2017 at 10:55  | Reason: Not specified

User
Posted 20 Jul 2017 at 11:10
Thanks for your responses. That 50 year married couple is my mum and dad. My mum wouldn't contact dad's doctor for info that dad hasn't given her. I think they are in their own vague bubble. Dad won't consider claiming any benefits. Has never in his life claimed so won't start now (and I quote ). I just worry that the docs won't fight for him if he won't fight for himself. My friend of 32 years asked how dad was the other day. I said he's not too good at the moment. She said 'you can have prostate cancer for years. He'll probably die of something else , I've had an awful day at work blah blah'. Hubby doesn't know how to handle this. Just hugs which is great. This forum is a life and sanity saver x
User
Posted 20 Jul 2017 at 13:04
Would it be worth calling in to the Mcmillan centre there should be one in the hospital and talking to someone? Is there a designated Mcmillan nurse allocated to your father, his wife should be able to find that out. I suggest telling the problems of non-communication with your father the nurses are very skilled in getting people to talk about end of life issues with people.
User
Posted 20 Jul 2017 at 17:49

If the PSA is still rising - a gap from May to October for the next appointment does sound very long. I would second trying to speak to someone at Mcmillan.

Re the person saying : 'people live with it for years - he'll probably die of something else' could you say something like 'I think you are thinking of standard prostate cancer - my dad has advanced prostate cancer which is much more complicated and has a different prognosis.'

 

User
Posted 20 Jul 2017 at 22:29
Hello Scabbycat I just read your post, I am so sorry you do not feel armed with all the facts regarding your Dad's diagnosis. I am in a similar position to you unfortunately as my lovely Dad also has PC (advanced). The day I found out back in February I telephoned the nurses attached to this site and they have been a lifeline ever since. I think I've called about nine times now, sometimes when I've needed the support emotionally and sometimes to ask specific information about Dad's treatment. I really cannot recommend calling them enough. The support they have given me as a daughter has been invaluable and at times has been of great comfort. I am thinking of you and sending much love xxx
User
Posted 26 Jul 2017 at 22:04
My dad was diagnosed with advanced prostrate cancer in July last year. Hormones didn't work, aribiterone didn't work for more than 3 cycles and now he is waiting for dental treatment so he can be approved for bone injections. It's absolutely heartbreaking watching him fade away and being in so much pain.

Please contact Macmillan as they are amazing! Hospitals can tend to leave you hanging between appointments and Macmillan definitely fill in the gaps.

Sending hugs

Bee xx

User
Posted 02 Oct 2017 at 19:02
Dad finally allowed me and my sister to go to his oncologist appointment today. Oncologist walked in and did a double take because we were there and also because of my dad's emaciated appearance. He then sat down in front of my dad, put his hand on his knee and looked into his eyes for 5 seconds before seeming to take a deep breath and began to speak. PSA now 470 and no more active treatment. His prostate cancer is so aggressive it hasn't responded to any treatment and it is not appropriate to try anything else. I asked about enzalutamide and Radium 223 but he is too weak for any of these. So they are referring him to the community end of life team. I'll never forget the look on my dad's face.
User
Posted 02 Oct 2017 at 19:34
Sorry to read that your dad is no longer getting treatment.

I hope your dad gets all the support he needs to keep him as comfortable as possible and that the rest of the family is supported too. Sending love to you all, Ian.

Ido4

User
Posted 02 Oct 2017 at 22:31

I'm so sorry to see this update. I hope you are able to spend some peaceful time with your dad while the medical teams make him as comfortable as possible. Make sure you take care of yourself x

User
Posted 03 Oct 2017 at 14:15

So sorry to hear this. At least you and your sister were there and heard the information. I do hope he gets really good palliative care. Take care of yourself and also your Mum.

User
Posted 03 Oct 2017 at 14:52

So glad that you were able to be there with your dad when this devastating news was given and hope that the palliative care team are already there for all of you. They can provide counselling right now, as well as offering the practical and medical support that you need. Most of all, they really understand what lies ahead of you and what options there are at each stage. With their help you will find the strength to cope with this frightening journey, and to make it as loving and calm as it can possibly be.

I would urge you to say all the things that you want to say to your dad, however hard it is to acknowledge what's facing him and you. I think we often leave it too late, trying to appear positive and not wanting to show our sadness. Or just overwhelmed by the practicalities of caring for someone who is dying. But we can never show/say 'I love you' too often. In so many ways that's all there is and all that matters.

Much love to you.

Ruth

xxx

User
Posted 03 Oct 2017 at 15:17

Thinking of you all scabbycat, XX

We can't control the winds - but we can adjust our sails
User
Posted 03 Oct 2017 at 23:05

HUGE HUGS Scabbycat xx

 

 
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