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What are the chances

User
Posted 25 Oct 2016 at 22:13
Still mulling whether to have a 6 monthly, well almost 8 monthly, PSA test.

Today I was discussing a 5 year plan with one of my staff who is looking at progressing. It got me thinking about my own. In theory I want to be retired although I will be a poor pensioner. I then rather pessimisticly started wondering where I would be with the old PCa and quite frankly and unsurprisingly I don't know.

I keep reading on here how the chances of recurrence significantly increase when you have had to have follow up treatment i.e. in my case ART. But what are the stats saying? What are the odds on me having to have further treatment?

Not being depressing or worrying but having read I have an increased risk I thought it's about time I asked what the %ages are

So if anyone (Lyn) knows please enlighten me

Bri

Edited by member 26 Oct 2016 at 06:19  | Reason: Not specified

User
Posted 26 Oct 2016 at 19:47

Hi Brian,

There was a comedian on the radio, he said 'I have worked for years and now have enough money to last me the rest of my life, as long as I die 3 weeks on Thursday!

This is the problem with the retirement decisions, how long will I live, how much money will I need?

In the past I have spent many hours searching on the Internet, for clear, concise, statistics, about my life expectancy, gradually the penny dropped, there aren't any accurate, clear and concise statistics, and there never can be, because medical science keeps progressing and new treatments evolve.

So when, back in 2007, I worked out that I had an 80% chance of lasting 10 years, that was flawed logic, because all it was telling me was that 80% of the men who had been treated in 1996 were still alive in 2006.  And the 1996 treatments were all different to what I was being offered in 2007.

By the same token I was only the second patient my consultant had referred for salvage HDR brachytherapy, so when I went back after treatment and asked him what my PSA should be, he said he wasn't really sure, so few patients had had the treatment and there wasn't yet enough data to know with certainty where the boundary between success and failure lay.

Simply put there aren't any 10 year survival statistics for salvage HDR brachytherapy, because no one was having that treatment 10 years ago, and the same logic applies to most other treatments, take something straightforward like traditional external beam RT, it is fair to say men have been having that treatment for years, however as we all know the doctors keep tweaking it, different dose rates, different factions, drinking before treatment, being scanned before treatment etc.

So I guess St Peter is the only person who knows when you are pencilled in his diary.

In the meantime, a bit of Marxism, I don't know whether it was Karl or Groucho who said "If work was good for you, the rich would have found a way of keeping it to themselves".

So go for it, retirement is good for you.

:)

Dave 

     

User
Posted 28 Oct 2016 at 02:02

Hi Brian,

'...Dave I have visited many older people's nursing homes. Becoming dependent on others does not appeal to me...'

I have also visited care homes and nursing homes, indeed I visited every single day for the last year of my mother's life, they don't appeal to me, and tell you what, they don't appeal to the residents either!

Why do you think they have locks on the doors, it certainly isn't to keep burglars out!

One game old boy in my mother's last place was a serial escaper, so they had wired up an alarm mat outside his door, poor old sod wasn't that fast on his zimmer frame, and he was on the first floor, struggling to make it to the lift every time he had set the alarm off, he got caught every time, but I admired his spirit.

I used to get up to tricks which annoyed the gestapo, like taking in a bottle of sherry so mum could have a glass.

But they were little victories, she lost the war, and escaped the only way anyone escapes, in a hearse.

The trouble is, once you have had a stroke, or dementia has set in, you don't get any choice, not even your loved ones have a choice, NHS and Social Services will gang up on you, complete their continuing healthcare assessments, and that's you matey, banged up in cell 18 of the Sunset Care Home.

Hopefully you won't be conscious enough to hear, let alone sing along with, the 3rd rate Elvis impersonator who comes along to entertain you every second Tuesday of the month, and hopefully your loved ones will visit regularly, but most don't, they find the place too depressing.

You know its at moments like this that I think PCa isn't so bad, hopefully it will see me off while I still know who I am, where I am, and who I love.  There really are some fates worse than death.

:(

Dave

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User
Posted 26 Oct 2016 at 08:53
Brian

All I will say as someone who was "cured" then "cured" again only for it to return and become incurable at the age of 52, is live for the now. I will not reach pension age although who knows, I might. I live for the now and do everything I want to now, while I can and am able to. For me, there is no point waiting and I feel rich, not monetarily, but having control over the now. Lyn will be able to answer your question more specifically about the physical and treatment side of things but psychologically, I've asked myself every question going and that's how I approach my life as a younger man affected by PCa. Good luck in your soul searching brother.

Bazza

Edited by member 26 Oct 2016 at 09:43  | Reason: Not specified

User
Posted 26 Oct 2016 at 09:30

A poor pensioner can still enjoy the simple things in life. Don't live with the regrets of time wasted.

We can't control the winds - but we can adjust our sails
User
Posted 26 Oct 2016 at 13:14

Brian I thought i had retired but some how have stumbled into a 20 hours a week job , so maybe if possible to reduce your hours would give you those me times . Andy

User
Posted 26 Oct 2016 at 15:30

For men who have biochemical recurrence after RP but do not have salvage RT, the average is 8 years before mets show their face. For men that do have salvage RT, 70% are still alive and met-free at 10 years post salvage treatment (USA research http://www.medscape.com/viewarticle/849319 )  A European study found 73.4% were still disease free at 5 years but the study only lasted 5 years  http://www.europeanurology.com/article/S0302-2838(13)01309-2/abstract/prediction-of-outcome-following-early-salvage-radiotherapy-among-patients-with-biochemical-recurrence-after-radical-prostatectomy 

Men whose PSA crept up after RP do better than men whose PSA rose rapidly.

"Patients with a rising PSA after RP have a 60% probability of developing distant metastasis and a 20% probability of dying as a result of prostate cancer within 10 years." http://ascopubs.org/doi/full/10.1200/jco.2006.08.9607 

Progression rates at 6 years post-salvage RT were different depending on whether or not the man had HT with the RT, and also men who had salvage while theor PSA was still below 0.5 did far better than those who waited until the PSA was higher. Of men with PSA above 0.5 and no RT, 32% were progression-free at 5 year point.

One last detail for you Bri - men who have adjuvant RT do better than men who have salvage RT so in theory, you are going to have a longer retirement than my John :-)

Edited by member 26 Oct 2016 at 15:34  | Reason: Not specified

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

User
Posted 26 Oct 2016 at 19:09

Bri,

With your PSA continuing to drop I'd read that as really positive, i.e. the follow-on treatment was bang on target. That being the case, adelante! as they say. I'd still want a 6 month test though!

Flexi

User
Posted 26 Oct 2016 at 19:47

Hi Brian,

There was a comedian on the radio, he said 'I have worked for years and now have enough money to last me the rest of my life, as long as I die 3 weeks on Thursday!

This is the problem with the retirement decisions, how long will I live, how much money will I need?

In the past I have spent many hours searching on the Internet, for clear, concise, statistics, about my life expectancy, gradually the penny dropped, there aren't any accurate, clear and concise statistics, and there never can be, because medical science keeps progressing and new treatments evolve.

So when, back in 2007, I worked out that I had an 80% chance of lasting 10 years, that was flawed logic, because all it was telling me was that 80% of the men who had been treated in 1996 were still alive in 2006.  And the 1996 treatments were all different to what I was being offered in 2007.

By the same token I was only the second patient my consultant had referred for salvage HDR brachytherapy, so when I went back after treatment and asked him what my PSA should be, he said he wasn't really sure, so few patients had had the treatment and there wasn't yet enough data to know with certainty where the boundary between success and failure lay.

Simply put there aren't any 10 year survival statistics for salvage HDR brachytherapy, because no one was having that treatment 10 years ago, and the same logic applies to most other treatments, take something straightforward like traditional external beam RT, it is fair to say men have been having that treatment for years, however as we all know the doctors keep tweaking it, different dose rates, different factions, drinking before treatment, being scanned before treatment etc.

So I guess St Peter is the only person who knows when you are pencilled in his diary.

In the meantime, a bit of Marxism, I don't know whether it was Karl or Groucho who said "If work was good for you, the rich would have found a way of keeping it to themselves".

So go for it, retirement is good for you.

:)

Dave 

     

User
Posted 27 Oct 2016 at 01:08
Loved your post Dave and I think it might have been Groucho 😊

What would I add to this Bri I know we are in opposite ends of the camp but actually my thoughts would be the same

Life is for living

Don't put of things for tomorrow because tomorrow may never come , make every day count we all get bogged down in the treadmill that we call life but in reality all of our lives are fragile and wether it's pca or a number 47 bus the end game will come to all of us.

Memories are not made of money and all we have to leave in the hearts of those that we leave behind is memories .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 27 Oct 2016 at 09:36
Hi Brian

I can only share my thoughts on your post and hope they may help. Working in public transport was never going to give me a financially rewarding life but it gave me security and a job I enjoyed so no regrets there. As regards stats for PCa treatment, well my view is that they are only helpful if I know which group I am in and I don't. I still have a lottery ticket in life's draw for a whole range of other things that could go wrong but I am certainly not worrying about all of them. I love being retired and just enjoying the freedom to go for walks and just stopping to enjoy what nature has to offer for free. My wife says that it's surprising how the simple things in life give such great pleasure and how lucky she is to be married to one. I would agree with the others - just enjoy what's on offer today and try not to fret about the future.

All the best to you

Kevan

User
Posted 27 Oct 2016 at 10:27

Thank you all for your replies. I should have said poor but happy pensioner 😀

Most of us have the mantra of living for today in one way or another. The financial experts don't fully agree with that mantra for the same reasons i.e. We don't know what's around the corner.
But in my/our situation we have had a 'warning' which is why I queried the stats. Yes my PSA hit the 0.01 2.5 years after the adjuvant RT which is brilliant. My question is I wonder how long that will last. Don't get me wrong it's not a constant question on my mind.
Thanks for the links Lyn.... My PSA started rising soon after the RP which was/is a concern. I was already dx as high risk. So believe me when I say I am not being doom and gloom or anything but I do like to plan

Cheers all

Bri

User
Posted 27 Oct 2016 at 11:40

I suspect the evidence suggests you cannot plan for certainty regarding any PCa diagnosis. I was told 2 years and it will be five years soon. I had cancer in 1982 and survived that completely and sadly we know of many men on here who died quickly. But I remain at risk to be run over by a bus tomorrow or similar uncertainty. So I think you plan for a long life and just get on with it.

My advice re retirement though is not about how wonderful and rich it is and I mean in the personal sense not a monetary one, but whether that is the right choice for you. Work/life balance I do not believe in. I think we do what makes us fulfilled and it is not a balance sheet at all. So if you enjoy work then why not carry on. If not consider how to get out. I am now approaching six months into retirement. I only did it because of my health and would not have retired otherwise. Whilst there are things I do enjoy I am still adjusting and keeping a national role going has helped my adjustment. So work out what you want, then what you can afford and allow the cancer just to decide for itself, there is a lot of life to go.

User
Posted 27 Oct 2016 at 11:46

Here Here! Paul

Bazza

User
Posted 27 Oct 2016 at 12:03

Bri, I think that as you had RT within 2 years of the RP and before the PSA had risen to 0.5, all those stats and research tell us that in 8 years time you have a 70% chance of still tootling along just monitoring your PSA. There is insufficient statistical evidence to indicate whether a) the number 8 bus can be relied upon b) an over-large comet (or Trump) will bring the apocalypse upon us or c) your good wife will have murdered you.

John finds work very frustrating and the ridiculous daily commute wears him down. I would love him to retire but he frets about us running out of money. My view is that statistically he is highly unlikely to live to his 80s so better to enjoy life now and worry about the future in the future. On the other hand, my dad retired at 60, not long before his diagnosis, and is still here 20 years later spending all the money that I would have inherited on darned cruises!

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

User
Posted 27 Oct 2016 at 12:59

Thank you.

Paul I am managing my work/work balance. But I think I have reached the stage where the downs of the job are out weighing the ups. I'd like to say it's due to getting older but it isn't just that. I shall refrain from a political rant.

Very selfish of your dad Lyn how dare he survive lol. My wife takes your view and would support me finishing tomorrow. I just wished I worked for her authourity as I would in all likelihood have been paid off by now. However, I am resistant to having my pension reduced significantly by taking it to early. But it maybe a case of needs must.

I do think if my PSA did start to rise and it wasn't just a fluctuation I would seriously consider leaving

Bri

Edited by member 27 Oct 2016 at 15:42  | Reason: Not specified

User
Posted 27 Oct 2016 at 18:29

What are you like at public speaking / delivering training? If and when you do give up work, I could probably give you a few hours each month!

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

User
Posted 27 Oct 2016 at 19:33

Hi Guys,

I think that there is another aspect of retirement that needs to be considered, people who are 'lucky' enough to live into their 80's, 90's and even 100's tend to become progressively less active and accordingly need less money.

Of course we all read about fantastic old men in their 90's who are still climbing mountains, riding motorbikes, living life to the full, however those news stories mask the truth, they wouldn't be newsworthy stories if it wasn't unusual for such old men to be so active.  Most old men in their 90's struggle to mow their lawns, and tie their shoe laces, just getting up and watching a little daytime TV is an achievement for many.

I remember a spokesman from the Guinness book of records commenting on local TV about a man who had broken records living to 110, 112 or something like that, the Guinness guy said 'Of course he led a full life and got up every day, lots of those aged over 100 often stay in bed for days on end'.

I am 63 and have retired a little early because of various factors like my mum needed caring etc, I am effectively living on a diminishing balance, no point investing in an annuity with interest rates like they are.

This year I have had 2 weeks holiday in Canada, trips to the theatre, football etc, I am off to an overnight reunion in London tomorrow, I am driving 14,000 miles a year, taking the grandchildren on trips to the seaside and theme-parks, happy in the knowledge that I might as well spend it now, while I am fit enough to enjoy it.

I haven't got enough money to spend at this rate for many more years, but I am being realistic, quite apart from PCa, I have arthritic hips, my knees are dodgy, the doctors have me on statins, which is code I am at risk of a heart attack or stroke in the next 10 years.  So if I am still here in ten years time, I probably won't be able to afford the health insurance for foreign holidays, my heart won't be able to cope with the excitement of a football match, and my grandchildren will be driving themselves to the seaside.

If I am still here in 20 years time, I will probably need carers to look after me, and if I have any money left Social Services and the Council will take it to pay for my care.  So I need to ensure that I either spend it all, or give it to my children, before that happens. 

So in planning for your retirement, remember you will have a few relatively expensive years, followed by relatively cheap years, and then while you still have your marbles, you need a cunning plan to ensure what you have left is passed on to your descendants and not snaffled by the government. 

:)

Dave

 

User
Posted 27 Oct 2016 at 21:32
I like your post Dave. Don't forget you have to give it away 7 years before you die though! Or it doesn't count!

My OH is thinking of retiring next year too. He is a farmer and works 24/7 all year round. At the moment not earning a huge amount. But his money is in his assets. So he wants to sell up next year. Prostate cancer has made him realise there's more to life than work. He will find other work though. Just not something he has to do every day. I only work part time. But I'm happy to do more hours if he does some school runs as we have young children still. (I'm 15 years younger) t will be strange if he does sell up.

Edited by member 27 Oct 2016 at 21:53  | Reason: Not specified

User
Posted 27 Oct 2016 at 22:00

A friend of mine who is ex child protection and now probation management has mooted the idea of us doing something in consultancy/training. I'm not sure about this.

Lyn I chair many meetings but don't actually do much public speaking.

Dave I have visited many older people's nursing homes. Becoming dependent on others does not appeal to me

Bri

User
Posted 28 Oct 2016 at 01:04

Ah well ... I can always get you out doing some of my auditing?

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

User
Posted 28 Oct 2016 at 02:02

Hi Brian,

'...Dave I have visited many older people's nursing homes. Becoming dependent on others does not appeal to me...'

I have also visited care homes and nursing homes, indeed I visited every single day for the last year of my mother's life, they don't appeal to me, and tell you what, they don't appeal to the residents either!

Why do you think they have locks on the doors, it certainly isn't to keep burglars out!

One game old boy in my mother's last place was a serial escaper, so they had wired up an alarm mat outside his door, poor old sod wasn't that fast on his zimmer frame, and he was on the first floor, struggling to make it to the lift every time he had set the alarm off, he got caught every time, but I admired his spirit.

I used to get up to tricks which annoyed the gestapo, like taking in a bottle of sherry so mum could have a glass.

But they were little victories, she lost the war, and escaped the only way anyone escapes, in a hearse.

The trouble is, once you have had a stroke, or dementia has set in, you don't get any choice, not even your loved ones have a choice, NHS and Social Services will gang up on you, complete their continuing healthcare assessments, and that's you matey, banged up in cell 18 of the Sunset Care Home.

Hopefully you won't be conscious enough to hear, let alone sing along with, the 3rd rate Elvis impersonator who comes along to entertain you every second Tuesday of the month, and hopefully your loved ones will visit regularly, but most don't, they find the place too depressing.

You know its at moments like this that I think PCa isn't so bad, hopefully it will see me off while I still know who I am, where I am, and who I love.  There really are some fates worse than death.

:(

Dave

User
Posted 28 Oct 2016 at 06:57

Wonderful Dave, just wonderful. My sentiments exactly.

Bazza

User
Posted 28 Oct 2016 at 07:04

Hopefully these horrors are a thing of the past since we got the Mental Capacity Act - residential settings can't go around locking people in their rooms without a court order these days, and certainly aren't allowed to put someone in a home against their wishes.

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

User
Posted 28 Oct 2016 at 07:18

Believe it or not there are some good/excellent care homes who have dedicated and caring staff.
Obviously I didn't see what you saw in your mums care home Dave. But my guess is the old guy who had the alarm mat more than likely had some form of dementia or had been assessed as being a risk to himself when walking or for other reasons. Having assistive technology to alert staff is not a bad thing. Consider if he had come to any harm. The staff would be accused of neglect. Unfortunately in the current climate it's rare to have a dedicated member of staff for each resident.
There is legislation in place to support you to have a choice should you suffer from dementia or any other condition that affects your cognition. You can make what is called an advanced directive while you are still mentally capable of doing so. Look up the Mental Capacity Act.
My comments about not wanting to become dependent are more about the indignity of it all not so much about the Care Home itself.

Bri

User
Posted 28 Oct 2016 at 09:15

Hi Guys,

I am sorry if I painted too bleak a picture.

On one level, the level that you and I would see it now, the nursing home was a wonderful place, full of caring staff, indeed I often wondered how care staff with such a depressing job, could manage to be so happy and upbeat.  And they did manage to keep mum alive for 12 months when she couldn't/wouldn't always eat or drink. 

And no Lynn, the doors to the individual residents rooms weren't locked, but there were locks and alarms to prevent them getting out into the garden, or making a dash for the pub. 

So far as choice is concerned my mother had had two strokes, the second one a major one that literally blew her mind.  Most days she seemed to recognise me, but from our conversations I think she thought I was my father.  A couple of times she was happy as the Queen had apparently called in to see her.  She hallucinated about a pet cat in her room.  She didn't know who she was, where she was, what day it was, even what year it was.  I am not sure she would have comprehended what a choice was.

It was a nursing home, one step up, or down if you like, from a care home, all the patients had suffered strokes or dementia, on one level many of them were like zombies, but if you spent time with them, and were patient, sparks of humanity were there to see, and believe me they all hated what had happened to them.

:)

Dave 

User
Posted 29 Oct 2016 at 08:48

Auditing sounds more up my street Lyn...

Bri

 
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