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To treat or not

User
Posted 28 Apr 2019 at 20:37

A bit of an unusual turnaround for me. But since being told I have a recurrence I have been giving some serious thought about QoL over longevity and just feeling crap as a result of treatment. 

I was dx in 2012 and had RP followed by RT in 2013. PSA undetectable until Nov 2018. 

Is there any research into how long I could live without treatment. Quite frankly I would rather have 4 years of quality life rather than 6 years of feeling crap due to treatment but don’t know what the odds are  

 

 

User
Posted 29 Apr 2019 at 00:05

Depends on your next few readings, Bri. Dad is up to 1.2 and Mr P is predicting he has another 15 years or so.

I still think the onco was too quick to tell you it is definitely a recurrence.

Edited by member 29 Apr 2019 at 00:06  | Reason: Not specified

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

User
Posted 30 Apr 2019 at 11:02
Could you work out how long I’ve got Lyn :-))

I’ve got lots I wanna do !

Then again maybe don’t bother :-// I don’t really want to know x

If life gives you lemons , then make lemonade

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User
Posted 28 Apr 2019 at 23:36

What's your PSA now??

User
Posted 29 Apr 2019 at 00:05

Depends on your next few readings, Bri. Dad is up to 1.2 and Mr P is predicting he has another 15 years or so.

I still think the onco was too quick to tell you it is definitely a recurrence.

Edited by member 29 Apr 2019 at 00:06  | Reason: Not specified

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

User
Posted 29 Apr 2019 at 00:21
Brian,

You don't show your age under your profile that I can see and this is one of several important factors that can have a bearing on the way you consider longevity v QoL. I think you also need to consider what sort of treatment and it's potential side affects you are prepared to tolerate. You also have to consider that dying due to PCa is often a very nasty way to go and advances in treatment may ameliorate later stages. It's a very personal decision and I think it unlikely that at this stage you can obtain a sufficiently meaningful personal forecast of how long you might have without further down the line treatment which in the event might not be as bad as you anticipate. We know that men sometimes confound predictions of clinicians and live far longer than guesstimates and others do far less well. Even without treatment of any kind the majority of men with PCa die of something else so their cancer does not progress at a rate to kill them , whilst others can appear to be cured but their cancer can at some stage accelerate alarmingly. When to stop further treatment becomes a very personal matter but perhaps one best decided after consultation with your oncologist as, when and if your cancer progresses to the stage where another treatment needs to be considered.

Barry
User
Posted 29 Apr 2019 at 09:46

I've thought long and hard on the choices ahead: I would not be happy to go back on hormones long term, though I'd give it a go. Same with chemotherapy: without a more convincing story about success, I find it hard to justify the side effects.

Point is, it's about lifestyle, and we're all different. Living, to me, includes getting out to live music at least a couple of times a week, getting to festivals, and traversing the country to keep up with extended family and old friends. If the disease - or its treatment - confined me to barracks, I'd call that existing, not living. And I'd opt out. Not while the balance of the mind was disturbed, but before I got to that.

I certainly wouldn't make any hard decisions until it was certain I had recurrence. But then I'd give HT a try - maybe it'd be easier second time around. And I'd give chemo a chance - some people sail through it.

I think what I'm saying is that you're best taking life changing decisions based of the practicalities of YOUR life: there's no standard definition of 'feeling crap' (though we all know what you mean!).

But asking your consultant to guesstimate your life expectancy with / without further treatment is perfectly reasonable step - provided you never forget that it's a guesstimate, not a fact.

Good Luck!

Edited by member 29 Apr 2019 at 09:52  | Reason: typos

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-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 29 Apr 2019 at 09:51
It’s just not possible really to guess as each man is different. Oncos don’t like to give a prognosis unless you are severely ill. As you know in my case Bri , in June I will be 4yrs post op with the only other treatment being 11months of bicalutamide. I’ve always had a huge psa , rapid doubling G9T4N1. I’ve always picked QOL and have enjoyed 2yrs of total recovery. Given that I’ve totally refused SRT , my Onco has insisted he won’t treat something he can’t see , and I’ve had the best scans in the world. Sadly it seems now I have spread to abdomen which will be confirmed end of this month. He did say to me when I was 50 that I may have 6 yrs in total with 2 yrs of freedom which I’ve had now.

As regards future treatment Bri it may seem stupid , even arrogant , but I still can’t get my head around being chemically castrated and Chemo given all my recovery to date. The other option of course is earlier demise but that can’t be avoided ultimately anyway. Very nasty old death whatever and whenever.

I think given your figures Bri you could genuinely have ages yet , and I know you are a worrier. If you want QOL then I suggest you maybe let that tiny psa grow to a reasonable figure then ask for a PET. The PSMA isn’t widely available but the Choline seems free on NHS in many areas

If life gives you lemons , then make lemonade

User
Posted 29 Apr 2019 at 10:02

Brian, has your PSA increased recently?

 

Ido4

User
Posted 29 Apr 2019 at 16:56
I don’t think anyone can predict that but 4 years does sound rather pessimistic given the fact that you could go on intermittent HT and have other treatments. I don’t know what your numbers are or whether you have been scanned for mets but that would have a bearing.
User
Posted 29 Apr 2019 at 18:47
Cheers all. My last PSA in Feb was 0.12. So still

low but thinking things through

Bri

User
Posted 30 Apr 2019 at 07:38

Originally Posted by: Online Community Member

Depends on your next few readings, Bri. Dad is up to 1.2 and Mr P is predicting he has another 15 years or so.

I still think the onco was too quick to tell you it is definitely a recurrence.

i would be extremely happy to have 15 years but think it’s highly unlikely ☹️. I’d be happy to reach state pension age but not optimistic about that either. Bri

 

User
Posted 30 Apr 2019 at 08:32
Of course you will make pensionable age.

We have just been reviewing our finances and are working on 15 years for John. That was what the actuary advised. He is 2 years ahead of you in terms of detectable level.

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

User
Posted 30 Apr 2019 at 08:50

Originally Posted by: Online Community Member
Of course you will make pensionable age.

We have just been reviewing our finances and are working on 15 years for John. That was what the actuary advised. He is 2 years ahead of you in terms of detectable level.

In the next 15 years, it's quite likely some lower side effect treatment will come along that extends this, and it's not impossible there could be a complete cure.

User
Posted 30 Apr 2019 at 11:02
Could you work out how long I’ve got Lyn :-))

I’ve got lots I wanna do !

Then again maybe don’t bother :-// I don’t really want to know x

If life gives you lemons , then make lemonade

User
Posted 30 Apr 2019 at 12:52

If I read your profile right dx at 50 ten years ago you all think John will hit 75?

Thats happy news!

 

User
Posted 30 Apr 2019 at 16:03
Ha ha ha. The conversation didn’t really happen that way round. While deciding whether to draw a pension pot, buy an annuity or take a cash sum, the financial adviser needed to be able to estimate the cross over points for where we would start to lose money. The cross over point (for John) is 17 years and the actuary predicts that John might not be around then so taking the higher amount now makes sound financial sense.

If Andy is correct and some miracle comes along, I will happily accept that we gambled and lost financially but gained in terms of him still being around to be poor with.

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

User
Posted 30 Apr 2019 at 16:07

Originally Posted by: Online Community Member

If I read your profile right dx at 50 ten years ago you all think John will hit 75?

Thats happy news!

on the basis that Dad was diagnosed aged 60 over 20 years ago, had nerve sparing when it was still a trial, had his recurrence 7 years ago and has so far refused any treatment, and the urologist is predicting that it will take another 15 years to kill him ... #win #liveyourbestlife 

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

User
Posted 30 Apr 2019 at 16:23

I’d better get off the pity potty and join this best life 😂

Mind you an actuary predicting Lx is a bit cheeky!

Edited by member 30 Apr 2019 at 16:25  | Reason: Not specified

User
Posted 01 May 2019 at 20:41

Such a tough choice Brian and probably one that I will have to consider carefully too. How long is your PSA doubling time?  If it is long you may have much more time to chose . It is likely be a relevant factor in any estimate that your onco may give you. At the end of the day it is a very difficult and personal decision.

User
Posted 01 May 2019 at 20:48
“What do we say to the God of Death?”

“Not today!”

Sorry, I’ve been watching too many episodes of Game of Thrones!

Cheers, John.

 
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