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User
Posted 14 Apr 2018 at 17:47
My dad was diagnosed on the 11th of march 2018 advanced prostate cancer gleason score of 9 psa 6350 bone and bladder mets things in way of treatment or anything very slow still waiting for an oncologist meeting due to my dads kidneys not draining

What next ???

Edited by member 15 Apr 2018 at 22:13  | Reason: Not specified

User
Posted 04 Jun 2018 at 21:17

Hi Jess,

really sorry to hear about your dad.  But I just wanted to tell you my positive story with my dad, to reassure you.  He was diagnosed with advanced prostate cancer spread to the bones in March 2012.  I literally thought my world had ended.  However, although advanced prostate cancer can not be cured, it can be managed for years and years! 

My dad has been on hormone therapy for more than six years, and last year his doc told him that there were drugs he could prescribe that would keep him alive for years and years.  Those were the best words to hear!!!

his PSA level has been below average since starting hormone therapy.  It started at 150, and went right down to 0.4.  It has just risen very slightly to 1.7 so he may need to change his treatment, but the doc said this is more a precautionary thing.  of course it does worry me that his PSA has risen slightly, but the doc did not change his stance of ”we can keep you alive for years and years”.

so, even upon receiving a diagnosis of advanced prostate cancer, people can still live a very long time... possibly even as long as they would have done anyway. my dad, despite the fact that he may need to change treatments, still feels great, goes travelling, paragliding, to the gym, building camper vans... and he physically is fine (I.e not too many issues going to the toilet, which is one of the main symptoms).

i wish you and your dad all the best, and keep drawing support from others’ positive stories.  Hormone therapy has the potential to keep him with you for many many more years. 

User
Posted 14 Apr 2018 at 17:47
My dad was diagnosed on the 11th of march 2018 advanced prostate cancer gleason score of 9 psa 6350 bone and bladder mets things in way of treatment or anything very slow still waiting for an oncologist meeting due to my dads kidneys not draining

What next ???

Edited by member 15 Apr 2018 at 22:13  | Reason: Not specified

User
Posted 14 Apr 2018 at 19:20

Hello Jess and welcome the site

It's very hard to get your head around the whole diagnosis thing and panic has a habit of creeping in.

I won't presume to advise you as I don't have the knowledge you need but I am sure somebody will be along with their words of wisdom. It does tend to be a little quieter at weekends

Your dad's PSA is very high as you will be aware, but we do have members with as higher and occasionally higher still.
Please don't think you are being ignored if you have to wait a little while for more information.

The members on this site are all experienced, in some way, in what you are currently feeling.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 15 Apr 2018 at 23:02

Okay so the hormone injection is a treatment and will have begun to starve the cancer almost immediately. Hopefully, the tumours will shrink quite quickly which will take pressure off the kidneys, perhaps?

I wouldn't worry too much about the chemo at this stage - until recently it was only given to men when all other treatments had run out, because chemo doesn't actually cure prostate cancer. It was only about 3 years ago that some trials showed that if you give chemo earlier in the process it can make the hormones work better. On the other hand, chemo can be a very dangerous treatment so the specialists won't want him to have it if his kidneys can't wash it out of his body.

He should soon start to see that PSA number plummet down.

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

User
Posted 15 Apr 2018 at 23:04

If you haven't done so already, download the toolkit from this website or call the number at the top of the page to order a copy - the sections on advanced cancer will be useful as you prepare to see the oncologist

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

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User
Posted 14 Apr 2018 at 19:20

Hello Jess and welcome the site

It's very hard to get your head around the whole diagnosis thing and panic has a habit of creeping in.

I won't presume to advise you as I don't have the knowledge you need but I am sure somebody will be along with their words of wisdom. It does tend to be a little quieter at weekends

Your dad's PSA is very high as you will be aware, but we do have members with as higher and occasionally higher still.
Please don't think you are being ignored if you have to wait a little while for more information.

The members on this site are all experienced, in some way, in what you are currently feeling.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 14 Apr 2018 at 21:40

It's hard to understand what you have written properly - are you saying that dad hasn't started any treatment yet? Has he been given some hormone tablets or a hormone injection?

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

User
Posted 15 Apr 2018 at 22:11
Sorry I'll clarify we're waiting for the oncologist meeting we've only spoke to a urologist who said they want my dads kidneys to be better before they do any chemo or trials?

He has had hormone injection degarilix twice

User
Posted 15 Apr 2018 at 23:02

Okay so the hormone injection is a treatment and will have begun to starve the cancer almost immediately. Hopefully, the tumours will shrink quite quickly which will take pressure off the kidneys, perhaps?

I wouldn't worry too much about the chemo at this stage - until recently it was only given to men when all other treatments had run out, because chemo doesn't actually cure prostate cancer. It was only about 3 years ago that some trials showed that if you give chemo earlier in the process it can make the hormones work better. On the other hand, chemo can be a very dangerous treatment so the specialists won't want him to have it if his kidneys can't wash it out of his body.

He should soon start to see that PSA number plummet down.

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

User
Posted 15 Apr 2018 at 23:04

If you haven't done so already, download the toolkit from this website or call the number at the top of the page to order a copy - the sections on advanced cancer will be useful as you prepare to see the oncologist

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

User
Posted 04 Jun 2018 at 21:17

Hi Jess,

really sorry to hear about your dad.  But I just wanted to tell you my positive story with my dad, to reassure you.  He was diagnosed with advanced prostate cancer spread to the bones in March 2012.  I literally thought my world had ended.  However, although advanced prostate cancer can not be cured, it can be managed for years and years! 

My dad has been on hormone therapy for more than six years, and last year his doc told him that there were drugs he could prescribe that would keep him alive for years and years.  Those were the best words to hear!!!

his PSA level has been below average since starting hormone therapy.  It started at 150, and went right down to 0.4.  It has just risen very slightly to 1.7 so he may need to change his treatment, but the doc said this is more a precautionary thing.  of course it does worry me that his PSA has risen slightly, but the doc did not change his stance of ”we can keep you alive for years and years”.

so, even upon receiving a diagnosis of advanced prostate cancer, people can still live a very long time... possibly even as long as they would have done anyway. my dad, despite the fact that he may need to change treatments, still feels great, goes travelling, paragliding, to the gym, building camper vans... and he physically is fine (I.e not too many issues going to the toilet, which is one of the main symptoms).

i wish you and your dad all the best, and keep drawing support from others’ positive stories.  Hormone therapy has the potential to keep him with you for many many more years. 

 
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