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prognosis at diagnosis

User
Posted 13 Feb 2017 at 07:15

morning

come next month will be 2 years from diagnosis, my prognosis was 3 years

I know we have people who have gone well past their prognosis date

am at the moment having a bit of trouble getting my head round the upcoming year

to anyone going for the test or seeing a urologist think about if you want to know this info

I thought it was the best thing to know but now not so sure

 

regards

nidge

 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 13 Feb 2017 at 11:52
Hi Bladerunner, I know exactly what you are on about. I was told "statistically" 2 to 10 years but think 3-4, don't think 10. The out of date but most recent stats say only 28% of men with advanced pc will live 5 years. That is all that the docs go on as unless they see something ultra grim on diagnosis they have no idea how well we will tolerate the drug regime or how good we will be at individually fighting the cancer. For example I asked him how long Abirateone will work and was told for some not at all, others 4 years, the median is about 18 months (I have been on it for 12 months this week). The stats they use were collated before early chemo was used, before much of the learnings from stampede trials , before much understanding about the disease which has come on at a rate in part due to charities like PCUK.

So back to your original statement, I was desperate to make 2 years as that was the earliest date he gave so I think I felt like you do for much of the second year. My prognosis changed from a death sentence to a live sentence as I realised that I was almost blessed to have a wake up call and stop wasting my life. So 3 months over my 2 years survival I like to know what will probably be coming my way at some stage in the future and know that I could start going downhill anytime and possibly fast but my focus is today. I woke up today and felt ok so it's a good day, nothing else matters. I have some hopes for good things I want to do and see in the next 6 months and I know that they may or may not happen.

You know I run, I know those dreams of races this year (and an unannounced mega race for 2018) are possibly unattainable and according to my stats should never have been attainable including races and holidays I "statistically" may not have had already but every day is a step towards my goals, a day more of dreaming about it, talking about it, reading about it, training for it, living etc.

On the day after my first chemo 2 years ago I had my defining moment, give up and just wait for a bus that may come soon or take 10 years to arrive or live for every day. No regrets any day from that day forwards. So that is what I do. Of course I get anxious before every blood test, with every twinge when I run but t am not waiting at "the bus stop" for that bus, it will have to find me and I intend to be well off the beaten track. A bit like hide and seek when we were kids, some were found too easily as they didn't do anything to try to hide well, others hid so well the seeker gave up, I think right now I am hiding pretty well but I make sure that I keep moving around and not just wait.

I hope that in some small way that the above has helped you ( and others) my friend, it's easy to say worry about what you can't change, don't dwell on what you can not but that's how I live. If I had never been given a prognosis with a short first date I would have faffed around these last 2 years instead of getting out there. I have 3 aims in life now that everything I do has to fit in at least one of:-

Do what I want to do , almost selfishly , every day, but never at the expense of others

Make the best memories for my family, friends and anyone I come into contact with

Raise funds and awareness for prostate cancer uk so that when my kids aged 12, 16 and 19 get to 40 prostate cancer will be tamed and along the way many will have gone to the docs on first symptom or when they realise they are in a high risk group ( black and/or close relative has had pc) and be cureable even with today's knowledge.

What are your positive plans today?

Take care

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 13 Feb 2017 at 12:15

Amen to that. Nice one Kev.

User
Posted 13 Feb 2017 at 13:38

I appear to be one of the 28% who survive beyond five years (yesterday!) with metatastic PCa. See Kevin's contribution above. I was told two years but once I got beyond that I have let it all take care of itself. The truth is there are so many factors involved and stats will be by definition inaccurate because treatment regimes have changed so much.

So if you feel well and can do what you want just grab each day and live life to the full. You know it makes sense.

Edited by member 13 Feb 2017 at 13:39  | Reason: Not specified

User
Posted 13 Feb 2017 at 23:13
Prognosis thankfully we didn't ask because I think they would have said are you mad you booked a return bus ticket 😢 Advice would probably have been try and get a refund .

Trevor was diagnosed May 2013 and here we are nearly 4 years on , bruised battered and very worn around the edges but Hey still dancing and what's more still singing.

I am not going to pretend that life has been great or that we have made the absolute best of every day because we haven't there has been tears and drama , ups and downs and moments of absolute despair , this is real life not the ! Waltons!

Nidge chuck that prognosis out of an upstairs window ( its useless ) it's not worth the paper it's written on . So many people ask me in absolute wonder because they can't imagine living our lives ! How do we do it ! How do we cope , if I had a magic formula I would pass it on to help others but I honestly don't.

So it's not a formula and isn't really words of wisdom but we just get up everyday and we just live !

B F N

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Feb 2017 at 05:35

thanks you lovely people am feeling more positive now

have a great day I plan to

and another one tomorrow as its my day off work, and a mates coming round to fix some cupboards

regard

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 14 Feb 2017 at 23:40

When being considered for treatment immediately after diagnosis, I asked about the surgeon heading the MDT about my survival prospects. He looked up a little book which apparently included the 'Partin Tables' and and said outcome not predicted as great. It seemed pretty clear that this was an average of cases with very similar indicators to mine and I felt it was so arbitrary that I would not pursue it further. In any event, compilations are based on past experience and treatments are improving. This reviews the 'Partin Tables' over time. http://onlinelibrary.wiley.com/doi/10.1046/j.1464-410X.2003.04275.x/pdf

Barry
User
Posted 15 Feb 2017 at 19:18

nidge

I read the Partin table only goes to stage 2c so of less relevance to you? A decade ago the RT guys at G8/9 I knew were told like I "we buy you time" no mention of how long. Still reckon that's the best to go with.

Ray

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User
Posted 13 Feb 2017 at 10:39

Hi blade runner we've never asked or been told Garys prognosis even though we know things will eventually progress , I've just had a birthday and felt sad that another year has passed but all we can go by is today and today Garys doing ok still working 5/6 days a week and still booking hols . It is mentally challanging but we try to stay as positive as possible even going lengths of time without discussing the dreaded C word .
I hope your doing well with the medications and look forward to your updates
Debby

User
Posted 13 Feb 2017 at 11:08

Hi Bladerunner

This is such a useful post...we were told at the diagnosis that my OH would 'be around this Christmas and the next, and then we'll have to wait and see'. We hadn't asked for a prognosis but I think the urologist thought that was a positive message since things were really rough at the time. Problem is that that information can't be unknown so it does play on one's mind.

I did ask for an updated prognosis in January after the chemo failed. Just felt I needed to know but I'm not at all sure it's been helpful.

E

User
Posted 13 Feb 2017 at 11:52
Hi Bladerunner, I know exactly what you are on about. I was told "statistically" 2 to 10 years but think 3-4, don't think 10. The out of date but most recent stats say only 28% of men with advanced pc will live 5 years. That is all that the docs go on as unless they see something ultra grim on diagnosis they have no idea how well we will tolerate the drug regime or how good we will be at individually fighting the cancer. For example I asked him how long Abirateone will work and was told for some not at all, others 4 years, the median is about 18 months (I have been on it for 12 months this week). The stats they use were collated before early chemo was used, before much of the learnings from stampede trials , before much understanding about the disease which has come on at a rate in part due to charities like PCUK.

So back to your original statement, I was desperate to make 2 years as that was the earliest date he gave so I think I felt like you do for much of the second year. My prognosis changed from a death sentence to a live sentence as I realised that I was almost blessed to have a wake up call and stop wasting my life. So 3 months over my 2 years survival I like to know what will probably be coming my way at some stage in the future and know that I could start going downhill anytime and possibly fast but my focus is today. I woke up today and felt ok so it's a good day, nothing else matters. I have some hopes for good things I want to do and see in the next 6 months and I know that they may or may not happen.

You know I run, I know those dreams of races this year (and an unannounced mega race for 2018) are possibly unattainable and according to my stats should never have been attainable including races and holidays I "statistically" may not have had already but every day is a step towards my goals, a day more of dreaming about it, talking about it, reading about it, training for it, living etc.

On the day after my first chemo 2 years ago I had my defining moment, give up and just wait for a bus that may come soon or take 10 years to arrive or live for every day. No regrets any day from that day forwards. So that is what I do. Of course I get anxious before every blood test, with every twinge when I run but t am not waiting at "the bus stop" for that bus, it will have to find me and I intend to be well off the beaten track. A bit like hide and seek when we were kids, some were found too easily as they didn't do anything to try to hide well, others hid so well the seeker gave up, I think right now I am hiding pretty well but I make sure that I keep moving around and not just wait.

I hope that in some small way that the above has helped you ( and others) my friend, it's easy to say worry about what you can't change, don't dwell on what you can not but that's how I live. If I had never been given a prognosis with a short first date I would have faffed around these last 2 years instead of getting out there. I have 3 aims in life now that everything I do has to fit in at least one of:-

Do what I want to do , almost selfishly , every day, but never at the expense of others

Make the best memories for my family, friends and anyone I come into contact with

Raise funds and awareness for prostate cancer uk so that when my kids aged 12, 16 and 19 get to 40 prostate cancer will be tamed and along the way many will have gone to the docs on first symptom or when they realise they are in a high risk group ( black and/or close relative has had pc) and be cureable even with today's knowledge.

What are your positive plans today?

Take care

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 13 Feb 2017 at 12:15

Amen to that. Nice one Kev.

User
Posted 13 Feb 2017 at 13:38

I appear to be one of the 28% who survive beyond five years (yesterday!) with metatastic PCa. See Kevin's contribution above. I was told two years but once I got beyond that I have let it all take care of itself. The truth is there are so many factors involved and stats will be by definition inaccurate because treatment regimes have changed so much.

So if you feel well and can do what you want just grab each day and live life to the full. You know it makes sense.

Edited by member 13 Feb 2017 at 13:39  | Reason: Not specified

User
Posted 13 Feb 2017 at 19:09

my positive today is

the weather is warming up may be able to get my trike out of its winter wraps soon

McMillan nurse been today upped my meds she doesn't seem to concerned, I have a lot of faith in her, going to make an onco appt to check the lumps in my groin we think they are swollen lympth nodes

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 13 Feb 2017 at 23:13
Prognosis thankfully we didn't ask because I think they would have said are you mad you booked a return bus ticket 😢 Advice would probably have been try and get a refund .

Trevor was diagnosed May 2013 and here we are nearly 4 years on , bruised battered and very worn around the edges but Hey still dancing and what's more still singing.

I am not going to pretend that life has been great or that we have made the absolute best of every day because we haven't there has been tears and drama , ups and downs and moments of absolute despair , this is real life not the ! Waltons!

Nidge chuck that prognosis out of an upstairs window ( its useless ) it's not worth the paper it's written on . So many people ask me in absolute wonder because they can't imagine living our lives ! How do we do it ! How do we cope , if I had a magic formula I would pass it on to help others but I honestly don't.

So it's not a formula and isn't really words of wisdom but we just get up everyday and we just live !

B F N

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Feb 2017 at 01:01

Splurted my tea at the return ticket comment - have never read anything so funny and yet so tragic at the same time!

Bladerunner, I don't have anything useful to say except that if you don't remember Spurspark and Nimeniton it might be worth going back to look at some of their old posts, especially 'the moon reflects a light'

Edited by member 14 Feb 2017 at 01:02  | Reason: Not specified

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

User
Posted 14 Feb 2017 at 05:35

thanks you lovely people am feeling more positive now

have a great day I plan to

and another one tomorrow as its my day off work, and a mates coming round to fix some cupboards

regard

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 14 Feb 2017 at 23:40

When being considered for treatment immediately after diagnosis, I asked about the surgeon heading the MDT about my survival prospects. He looked up a little book which apparently included the 'Partin Tables' and and said outcome not predicted as great. It seemed pretty clear that this was an average of cases with very similar indicators to mine and I felt it was so arbitrary that I would not pursue it further. In any event, compilations are based on past experience and treatments are improving. This reviews the 'Partin Tables' over time. http://onlinelibrary.wiley.com/doi/10.1046/j.1464-410X.2003.04275.x/pdf

Barry
User
Posted 15 Feb 2017 at 10:03

nidge, good your spirits are on the rise. A very timely post as I'm in a relaxed what if (out of remission or not) pondering mode. In all areas I've always been want to know the facts. From that base on a decision on those or gut feeling, trying to avoid the compromise of somewhere between the two. However I"m changing to would I really want to know the timescale. Life so far back as I can or want to remember has been a mix of faith and perhaps for coping reasons life is but a game albeit not so pleasant at times. I like to think for a change I will ignore the facts and just follow the faith and game paths but will I? Guess on the faith/game basis its your move next Ray :-)

Barry

Thanks for the link, very interesting.

Ray

User
Posted 15 Feb 2017 at 11:16

looked at the link but bu****ed if I can understand it lol

macmillan nurse has asked for a oncologist apt, will wait and see when date is as have some private health ins which should cover cost of 1 visit

 

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 15 Feb 2017 at 19:18

nidge

I read the Partin table only goes to stage 2c so of less relevance to you? A decade ago the RT guys at G8/9 I knew were told like I "we buy you time" no mention of how long. Still reckon that's the best to go with.

Ray

 
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