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What is life expectancy

User
Posted 20 Nov 2021 at 19:59

Inspired by a post on another forum (U.S.) I ask myself, like we all do at the time of diagnosis, although we don't particularly want to know the answer, how many years do I have. 

I read the outcomes of the some of the research and it seems that one treatment over another extends life by months rather than years. But much of the research uses old data, and I don't know how survivability is defined if the subjects are still alive. Plus treatment is improving.  

So lets look at the empirical evidence as provided by those who read this message board. How long is it since you were first diagnosed with T4 metatistic PC with Gleason 8? 

Last February my urologist said 5 years - but I don't accept that especially now that my PSA is unmeasurable as has been testosterone for the past 5 months (but I know it could change).

Contributions please

User
Posted 21 Nov 2021 at 00:22

It will vary depending on whether you want to compare bone mets with soft organ mets; for a true comparison you also need respondrnts to state whether they had confirmed adenocarcinoma rather than one of the more aggressive ones.

A man with mets in the brain, liver, kidneys, lungs will often survive for a much shorter time than a man with bone mets. PCa which goes into the jaw or skull seems to often be much more aggressive than a cancer that goes just to the pelvis or hip. A man diagnosed with small cell or mucinous prostate cancer, or adenocarcinoma with small cell traces, will do well to survive 2 - 3 years; a man with adenocarcinoma and a couple of bone mets can still be living a good life 10 or 15 years post diagnosis.

You could look at past members' profiles. Si_Ness was T3 M1b I think and lived just 5 years. Trevor_Boothe was also M1b and lived 5 years. Yorkhull had one met in his hip and lasted 7 years. Alathays was dx with extensive bone mets, engaged in every trial going and died 8 years later. Candiman was 43 at dx with T3 N1 M0 and died 6 years later; his cancer was resistant to all treatments. Nimeniton was T4 Nx M1 and we lost him in 20 months. Mrstommofire's husband (age 52) was T4 N2 M1 with elements of both small cell and adenocarcinoma- he lived for about 18 months I think. Finally, Spursspark - age 46, T3 N1 M0 died just after his 50th birthday. Old Al - I think age 50, dx T? M1b G10 - prognosis 6 to 9 months but did nearly 10 years!

These are my friends, men who guinea pigged many of the treatments now taken for granted ... abiraterone, enza, carboplatin, cyberknife, radium 223.

On a happy note George, George was T4 N1 I think and is still here 18(?) years on.

Edited by member 21 Nov 2021 at 00:33  | Reason: Not specified

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

User
Posted 20 Nov 2021 at 19:59

Inspired by a post on another forum (U.S.) I ask myself, like we all do at the time of diagnosis, although we don't particularly want to know the answer, how many years do I have. 

I read the outcomes of the some of the research and it seems that one treatment over another extends life by months rather than years. But much of the research uses old data, and I don't know how survivability is defined if the subjects are still alive. Plus treatment is improving.  

So lets look at the empirical evidence as provided by those who read this message board. How long is it since you were first diagnosed with T4 metatistic PC with Gleason 8? 

Last February my urologist said 5 years - but I don't accept that especially now that my PSA is unmeasurable as has been testosterone for the past 5 months (but I know it could change).

Contributions please

User
Posted 21 Nov 2021 at 07:47
Hi Gary was PSA 23 Gleason 4+5 T3 N1M1 spread to lymph nodes at diagnosis,he’s still here 6 years later .Still working with his PSA undetectable for 5.5 years after early chemo and continued treatment of ENZO and ABI .Hopefully if things start moving in the wrong direction more treatments will be available.

Best wishes

Debby

User
Posted 21 Nov 2021 at 16:52
Not sure urologists should ever give a prognosis as they don't usually get stuck in with the palliative / end stage bit (although John's does)

I agree with you that newly diagnosed men with advanced PCa need hope and that a positive mindset can help cope with treatments and also with making the most of whatever time is left. I am more concerned though with the consultants who gloss over the seriousness of a diagnosis and give a patient an unrealistic understanding of their situation - we have seen it too often here. The oncos who decline to predict a time are, in my view, very wise.

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

User
Posted 21 Nov 2021 at 17:03
PS the fact that your urologist thought you might be at risk of SCC does rather suggest that his knowledge of advanced PCa is rather vague and that - on balance of probability- his 5 year prediction was pulled out of a hat.

You are right about my father in law but he wasn't choosing quality over life-prolonging treatment - he believed that he was a G3+4 T1 / T2a N0 M0.

One thing that does seem to be played out on this forum again and again is that men diagnosed in their 40s have much poorer outcomes than men in their 60s or 70s, often with extremely aggressive cancers that become hormone independent very quickly.

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

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User
Posted 21 Nov 2021 at 00:22

It will vary depending on whether you want to compare bone mets with soft organ mets; for a true comparison you also need respondrnts to state whether they had confirmed adenocarcinoma rather than one of the more aggressive ones.

A man with mets in the brain, liver, kidneys, lungs will often survive for a much shorter time than a man with bone mets. PCa which goes into the jaw or skull seems to often be much more aggressive than a cancer that goes just to the pelvis or hip. A man diagnosed with small cell or mucinous prostate cancer, or adenocarcinoma with small cell traces, will do well to survive 2 - 3 years; a man with adenocarcinoma and a couple of bone mets can still be living a good life 10 or 15 years post diagnosis.

You could look at past members' profiles. Si_Ness was T3 M1b I think and lived just 5 years. Trevor_Boothe was also M1b and lived 5 years. Yorkhull had one met in his hip and lasted 7 years. Alathays was dx with extensive bone mets, engaged in every trial going and died 8 years later. Candiman was 43 at dx with T3 N1 M0 and died 6 years later; his cancer was resistant to all treatments. Nimeniton was T4 Nx M1 and we lost him in 20 months. Mrstommofire's husband (age 52) was T4 N2 M1 with elements of both small cell and adenocarcinoma- he lived for about 18 months I think. Finally, Spursspark - age 46, T3 N1 M0 died just after his 50th birthday. Old Al - I think age 50, dx T? M1b G10 - prognosis 6 to 9 months but did nearly 10 years!

These are my friends, men who guinea pigged many of the treatments now taken for granted ... abiraterone, enza, carboplatin, cyberknife, radium 223.

On a happy note George, George was T4 N1 I think and is still here 18(?) years on.

Edited by member 21 Nov 2021 at 00:33  | Reason: Not specified

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

User
Posted 21 Nov 2021 at 07:47
Hi Gary was PSA 23 Gleason 4+5 T3 N1M1 spread to lymph nodes at diagnosis,he’s still here 6 years later .Still working with his PSA undetectable for 5.5 years after early chemo and continued treatment of ENZO and ABI .Hopefully if things start moving in the wrong direction more treatments will be available.

Best wishes

Debby

User
Posted 21 Nov 2021 at 13:58
You will note from the above cases how survival times after diagnosis vary considerably due to a number of factors as Lyn has illustrated. 5 years may be a very rounded average, the actual number for an individual could be quite different. Furthermore, the average is likely to increase when recent and new treatments raise expectation. I wouldn't place much reliance on such an averaged figure as being typical, the way PCa can advance and respond to treatment being so variable.
Barry
User
Posted 21 Nov 2021 at 14:32
The point being that this is exactly what a urologist or oncologist is doing when they offer a prognosis... a broad guess based on their experience of past cases.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Nov 2021 at 15:55
Is it not an issue that a "pessimistic" prognosis may reduce the incentive for people to reduce their "quality" of life (e.g. sex, diet, exercise) with treatment for something that may only add months of survival in the limited time remaining? If I recall well LynE your f-in-l opted for quality.

Newly diagnosed men may need something to be positive about. For example, my initial "dismay" at 5 years has been replaced by optimism that I will get at least 10, as long as I play my part in not only completing RT and staying on HT but paying attention to diet and exercise.

As far as my 5 years is concerned, the urologist stated this on the basis of limited information, while his strong advice to take care as I may become paralysed has stuck in my mind despite the 3 mets being 2 in the pelvis and a small one in my right shoulder and PSA being udetectable.

User
Posted 21 Nov 2021 at 16:52
Not sure urologists should ever give a prognosis as they don't usually get stuck in with the palliative / end stage bit (although John's does)

I agree with you that newly diagnosed men with advanced PCa need hope and that a positive mindset can help cope with treatments and also with making the most of whatever time is left. I am more concerned though with the consultants who gloss over the seriousness of a diagnosis and give a patient an unrealistic understanding of their situation - we have seen it too often here. The oncos who decline to predict a time are, in my view, very wise.

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

User
Posted 21 Nov 2021 at 17:03
PS the fact that your urologist thought you might be at risk of SCC does rather suggest that his knowledge of advanced PCa is rather vague and that - on balance of probability- his 5 year prediction was pulled out of a hat.

You are right about my father in law but he wasn't choosing quality over life-prolonging treatment - he believed that he was a G3+4 T1 / T2a N0 M0.

One thing that does seem to be played out on this forum again and again is that men diagnosed in their 40s have much poorer outcomes than men in their 60s or 70s, often with extremely aggressive cancers that become hormone independent very quickly.

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

 
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