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Just need to vent

User
Posted 20 May 2014 at 14:42
Hi. My dad has just been diagnosed. He says it's too far gone for any treatment. Not sure where this leaves us as Dr isn't going to refer him anywhere. I feel like we just have to wait and watch him die?( sorry) he was sent away with a 3 day prescription for vitamins(?) and no support at all. I know this is all fresh and will settle once diagnosis has sunk in but I have so many questions and he can't answer them. So sorry if this isn't appropriate for this page but I don't know what else to do?

User
Posted 21 May 2014 at 00:29
Hi Sharron,

as the others have said, this makes no sense at all and I am pretty sure someone has misunderstood something. You say that the doctor isn't going to refer him anywhere so was he told by the GP about this diagnosis or did he actually attend a hospital appointment? Have you seen the tablets he is on? Could it be 3 weeks of hormones rather than 3 days of vitamins? Or a three monthly injection of hormones?

The oncology services just don't tell someone they are terminally ill and send them home - well sometimes they might but then patients and families quite rightly kick off - there would be hospice services, palliative care, pain control all to discuss or refer on for. You don't say much about your dad's state of health - his age, whether he is in great pain, whether he has other medical problems?

It just sounds wrong - I hope you can get a bit more of the story for us.

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

User
Posted 22 May 2014 at 19:10

hi, my husband has just been diagnosed with a mid aggressive prostate cancer and hopefully they have caught it in time but the stress is unbearable so I can't imagine how you all must be feeling, all I can say is keep pushing for help and advice and support, as they say, 'the sqeaky wheel gets oiled', we haven't had any support at all and as his wife, I am practically dismissed. the system seems to useless in helping us all through it

 

User
Posted 22 May 2014 at 20:01
Hello filtafeeda. It is a very stressful situation, especially if you haven't been included. Did your husband not get allocated his own prostate nurse. IF so, keep badgering them for info. It helps if you make a list of the questions you want answered, including when you see a doctor. Then they know you mean business. It's Your life and body. Contact the consultant's secretary and make sure you get copies of letters sent to your husband's GP.

If you know what you are dealing with it helps a bit. Don't despair. I cope by making sure that I am aware of everything that's going on, even when my husband isn't!!

We can't control the winds - but we can adjust our sails
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User
Posted 20 May 2014 at 20:32
Hi Sharron. So sorry to hear your news.

Did your dad attend the meeting with the consultant by himself. Is it possible he misunderstood.

IT doesn't sound like he was even offered palliative care and I'm pretty sure vitamins alone wouldn't count.

Would it be possible for you or another family member to ring his consultants secretary and ask for confirmation.

I have so far spoken to three different consultants' secretaries and without exception they have been a helpful as they can.

How old is your dad, how long has he had prostate cancer.

There are many members on here that can offer more relevant advice than I can so please hang in there until somebody comes along.

We can't control the winds - but we can adjust our sails
User
Posted 20 May 2014 at 20:46

" He says it's too far gone for any treatment "

Doesn't sound quite right. Is this your Dad's words or the medics ? Was it meant too far gone for fully curative treatment ?

Even if advanced, there are treatments such as injections/tablets that can help control.

I'd suggest a joint appointment ( you & Dad ) with GP to clarify the position as to what path the treatment will take.

 

User
Posted 20 May 2014 at 20:54

Hi, Sharron.  Sorry to hear this. You could ask for a second opinion but maybe Dad does not want suggested treatment-have seen this before.  Come back for support and maybe more answers from other members.

User
Posted 20 May 2014 at 21:59
My dad is 85, and whilst I am not aware of his full history - he has had an enlarged prostate reduced in his 60's - his cancer is in his bones. He is on testosterone reducing injections and tablets, and requires an operation on his kidneys, which will probably be in early June.

The long term prognosis isn't good. Nevertheless, the condition is being treated. I can't believe your father has not been offered anything. You should definitely investigate further on his behalf, and to give you peace of mind.

Stay Calm And Carry On.
User
Posted 20 May 2014 at 23:05
Hi sorry to hear your news.as others have said was your Dad alone when the news was given.Eric was told he had cancer actualy please read his profile its not unlike what your Dad has been told.I would definatley contact the doctor who your Dad has seen and ask for an urgent appiontment for the next day thats what we did.If you had given a litle more information there are many on this site that could offer some advice as I may even be of some help.

Carol

User
Posted 21 May 2014 at 00:29
Hi Sharron,

as the others have said, this makes no sense at all and I am pretty sure someone has misunderstood something. You say that the doctor isn't going to refer him anywhere so was he told by the GP about this diagnosis or did he actually attend a hospital appointment? Have you seen the tablets he is on? Could it be 3 weeks of hormones rather than 3 days of vitamins? Or a three monthly injection of hormones?

The oncology services just don't tell someone they are terminally ill and send them home - well sometimes they might but then patients and families quite rightly kick off - there would be hospice services, palliative care, pain control all to discuss or refer on for. You don't say much about your dad's state of health - his age, whether he is in great pain, whether he has other medical problems?

It just sounds wrong - I hope you can get a bit more of the story for us.

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

User
Posted 21 May 2014 at 22:17

Hi Sharon,

I have to agree with Lyn, this does not sound right, even in very late stages your Dad would have been given some sort of care plan. Was your Dad on his own at this appointment?. I may be totally wrong but I am wondering if maybe this is what he has told you so not to worry you.

Keep posting we are all here to help and give you support.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 May 2014 at 11:51
Hi Sharon

I too am shocked to see this and think it's not right. It sounds a bit like dad has only heard a small amount of what was said. Being sent away with vitamins is not a likely treatment. Please try to find out more about what was said and who said it. No one would be left like this, not in the Uk and if this turns out to be as stated then it's time to out your complaining hat on.

Love

Allison

User
Posted 22 May 2014 at 12:26

Sharron, so sorry to hear this. Definately chase it up as others have advised. Sometimes takes a long time to find out what's going on but worth it if it is your Dad's well being at stake.

 

Fiona.

User
Posted 22 May 2014 at 19:10

hi, my husband has just been diagnosed with a mid aggressive prostate cancer and hopefully they have caught it in time but the stress is unbearable so I can't imagine how you all must be feeling, all I can say is keep pushing for help and advice and support, as they say, 'the sqeaky wheel gets oiled', we haven't had any support at all and as his wife, I am practically dismissed. the system seems to useless in helping us all through it

 

User
Posted 22 May 2014 at 20:01
Hello filtafeeda. It is a very stressful situation, especially if you haven't been included. Did your husband not get allocated his own prostate nurse. IF so, keep badgering them for info. It helps if you make a list of the questions you want answered, including when you see a doctor. Then they know you mean business. It's Your life and body. Contact the consultant's secretary and make sure you get copies of letters sent to your husband's GP.

If you know what you are dealing with it helps a bit. Don't despair. I cope by making sure that I am aware of everything that's going on, even when my husband isn't!!

We can't control the winds - but we can adjust our sails
User
Posted 19 Jun 2014 at 15:51
sharron,

i think everyone here is giving you calm, rational and sound advice. When i first went to see a consultant and was give the news that i had prostate cancer it was a really big shock. Five or six days later i was still remembering things that i had forgotten the guy said to me. For the next follow up visit i took my wife. It just really helped to have a 'friend' in the room on your side, it puts you at ease and allows you to concentrate on what is going on in a stressful situation. Get involved as much as you dad will let you and help him as much as you can he may still be in shock.

joe

No matter how you feel get up, get washed, get dressed and go out. This is not a dress rehearsal
User
Posted 20 Jun 2014 at 07:15
Good luck with the op if that is what you choose to do. Please ask any questions on here. I will say that if that s the route you are taking make sure the surgeon is very experienced in the procedure

Bri

Edited by member 20 Jun 2014 at 07:19  | Reason: Not specified

 
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