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User
Posted 07 Apr 2018 at 14:42
Still in shock really after being told Kev’s prostate cancer is in his lymph nodes in his stomach and pelvis. We want to be that little old couple holding hands walking along the seafront. When the consultant tells you 5 years, is he being cautious with what he says? Has anyone else been told this? We see the chemo man on Thursday. I’m guessing it’s for a plan of attack. Can anyone give me tips on what to ask please

Denise xx

User
Posted 07 Apr 2018 at 23:46

It’s tough isn’t it - it could be that your onco has details of your husband’s case that mean the 5 year estimate is reasoned and backed by science .... or he could just be a miserable so & so. Only you can judge which :-/

I think you do need to be realistic about whether he is likely to still be here in 10 or 15 years and perhaps start thinking about priorities / a wish list. John is about the same age as Kev. We don’t have scans showing mets but I think we have both accepted that we are not going to have the golden old age together that we dreamed of and so made a decision last week that John should stop work now and have the time and freedom that he might not be able to enjoy when he actually gets old enough to retire. It is a bit scary but also massively liberating - and if we are blessed and he is still here in 15 years we might run out of money but we will have had some adventures on the way.

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

User
Posted 07 Apr 2018 at 20:19

Denise, My advice is never to ask "how long" because nobody knows. I agree with Dark Warrior and my own experience suggests at least double that consultant's cautious guess. I would make your plans for those seafront walks, stay fit and positive, work your way through the treatments and stay focussed on what you both want out of life - and make sure that you get it!

AC

User
Posted 08 Apr 2018 at 11:27

If you are given a prognosis of, say, 5 years, you can be quite sure that in that time, treatments will get better and prospects for PC patients will improve. Every week, about 150 scientific papers are published that have some bearing on our understanding of the disease, and the efforts of clinicians and scientists in this country and around the world mean that new treatments are being trialled, and becoming available, all the time.

User
Posted 08 Apr 2018 at 21:34

I feel consultants should not so readily offer an opinion which can be inaccurate and cause a patient to be demoralized when a man sometimes goes on to prove this wrong, perhaps by a living a number of additional years. Of course nobody wants to be told that they can expect a certain number of years for this to be wildly optimistic. Perhaps where pressed, a consultant could give a less definite answer, something like "if you are lucky side of average you could have x years, maybe more if you respond well to improved treatments but if you don't respond well it could be of the order of y months or years based on current science and treatments." This would provide a better and more appropriate idea of the likely parameters. and less stark predictions.

Barry
User
Posted 07 Apr 2018 at 18:45
I think 5 years is being rather cautious, yes. Plenty of men survive a lot longer in this state, with current treatments.

Good luck!

User
Posted 08 Apr 2018 at 13:23
Originally Posted by: Online Community Member

If you are given a prognosis of, say, 5 years, you can be quite sure that in that time, treatments will get better and prospects for PC patients will improve. Every week, about 150 scientific papers are published that have some bearing on our understanding of the disease, and the efforts of clinicians and scientists in this country and around the world mean that new treatments are being trialled, and becoming available, all the time.

I think that is very true for newly diagnosed men but you also have to take into consideration what has gone before. In Denstar’s case, Kev is already 6 years in and in our case, 9 years in. Statistically, men with lymph mets or biochemical recurrence are increasingly surviving for 15 years but the data for biochemical recurrence is all based on the % chance of 10 year survival from the point of salvage treatment. New treatments or approaches are coming online all the time but the clock doesn’t always go back to zero.

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

User
Posted 08 Apr 2018 at 13:43

Denstar, Kefalonia is on my bucket list - have a lovely time xxx

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

User
Posted 08 Apr 2018 at 16:30

Originally Posted by: Online Community Member
When the consultant tells you 5 years, is he being cautious with what he says?

Hi Denise,

Was chatting with someone with PCa in Maggie's this week who told me his consultant gave him 9 months. That was 3 years ago.

He had node involvement. He's very fit and well and told me that when his HT becomes inactive  they have another HT type which will give him another 5 years.

 

User
Posted 08 Apr 2018 at 17:51
Check out theses websites for the book


https://www.whsmith.co.uk/products/captain-corellis-mandolin/9780749397548

https://www.waterstones.com/book/captain-corellis-mandolin/louis-de-bernieres/9780749397548

https://www.amazon.co.uk/Captain-Corellis-Mandolin-Louis-Bernieres/dp/0749397543

Edited by member 09 Apr 2018 at 18:19  | Reason: Not specified

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User
Posted 07 Apr 2018 at 18:45
I think 5 years is being rather cautious, yes. Plenty of men survive a lot longer in this state, with current treatments.

Good luck!

User
Posted 07 Apr 2018 at 20:19

Denise, My advice is never to ask "how long" because nobody knows. I agree with Dark Warrior and my own experience suggests at least double that consultant's cautious guess. I would make your plans for those seafront walks, stay fit and positive, work your way through the treatments and stay focussed on what you both want out of life - and make sure that you get it!

AC

User
Posted 07 Apr 2018 at 23:46

It’s tough isn’t it - it could be that your onco has details of your husband’s case that mean the 5 year estimate is reasoned and backed by science .... or he could just be a miserable so & so. Only you can judge which :-/

I think you do need to be realistic about whether he is likely to still be here in 10 or 15 years and perhaps start thinking about priorities / a wish list. John is about the same age as Kev. We don’t have scans showing mets but I think we have both accepted that we are not going to have the golden old age together that we dreamed of and so made a decision last week that John should stop work now and have the time and freedom that he might not be able to enjoy when he actually gets old enough to retire. It is a bit scary but also massively liberating - and if we are blessed and he is still here in 15 years we might run out of money but we will have had some adventures on the way.

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

User
Posted 08 Apr 2018 at 07:06

I think you just have to look at many men on here who are outliving their prognosis. That will hopefully give you some reassurance

Wow Lyn J retiring came as a surprise. I would say definitely the right decision. If you can do it then do so as none of us know what’s round the corner. I won’t be far behind him

Bri

User
Posted 08 Apr 2018 at 09:56
Originally Posted by: Online Community Member

It’s tough isn’t it - it could be that your onco has details of your husband’s case that mean the 5 year estimate is reasoned and backed by science .... or he could just be a miserable so & so. Only you can judge which :-/

I think you do need to be realistic about whether he is likely to still be here in 10 or 15 years and perhaps start thinking about priorities / a wish list. John is about the same age as Kev. We don’t have scans showing mets but I think we have both accepted that we are not going to have the golden old age together that we dreamed of and so made a decision last week that John should stop work now and have the time and freedom that he might not be able to enjoy when he actually gets old enough to retire. It is a bit scary but also massively liberating - and if we are blessed and he is still here in 15 years we might run out of money but we will have had some adventures on the way.

Nice post Lyn. Well said.

I am pleased for you both.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 08 Apr 2018 at 11:27

If you are given a prognosis of, say, 5 years, you can be quite sure that in that time, treatments will get better and prospects for PC patients will improve. Every week, about 150 scientific papers are published that have some bearing on our understanding of the disease, and the efforts of clinicians and scientists in this country and around the world mean that new treatments are being trialled, and becoming available, all the time.

User
Posted 08 Apr 2018 at 12:23
Thank you all for your re-assurances. Most of the time I’m really positive. On the odd occasion I get a little panic going on inside. Asking questions here always gets me back on track. Once we get Thursday out of the way and discussions about chemo appointments I’m sure things will be better. On a bright note our e-tickets have come today for Kefalonia in May. A nice relaxing break in the sun before the chemo starts. Thanks one again. Lyn, you are a fountain of knowledge

Denise xx

User
Posted 08 Apr 2018 at 13:23
Originally Posted by: Online Community Member

If you are given a prognosis of, say, 5 years, you can be quite sure that in that time, treatments will get better and prospects for PC patients will improve. Every week, about 150 scientific papers are published that have some bearing on our understanding of the disease, and the efforts of clinicians and scientists in this country and around the world mean that new treatments are being trialled, and becoming available, all the time.

I think that is very true for newly diagnosed men but you also have to take into consideration what has gone before. In Denstar’s case, Kev is already 6 years in and in our case, 9 years in. Statistically, men with lymph mets or biochemical recurrence are increasingly surviving for 15 years but the data for biochemical recurrence is all based on the % chance of 10 year survival from the point of salvage treatment. New treatments or approaches are coming online all the time but the clock doesn’t always go back to zero.

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

User
Posted 08 Apr 2018 at 13:43

Denstar, Kefalonia is on my bucket list - have a lovely time xxx

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

User
Posted 08 Apr 2018 at 14:16
Enjoy Kefalonia Denstar. We had a very happy holiday there a fair few years ago. I read the book " Captain Corelli's Mandolin " whilst there as it was set on the island. Good book and film.

Have a lovely holiday.

User
Posted 08 Apr 2018 at 16:30

Originally Posted by: Online Community Member
When the consultant tells you 5 years, is he being cautious with what he says?

Hi Denise,

Was chatting with someone with PCa in Maggie's this week who told me his consultant gave him 9 months. That was 3 years ago.

He had node involvement. He's very fit and well and told me that when his HT becomes inactive  they have another HT type which will give him another 5 years.

 

User
Posted 08 Apr 2018 at 17:00
I’ve been looking for the book but with no success. We are really looking forward to going

Denise xx

User
Posted 08 Apr 2018 at 17:51
Check out theses websites for the book


https://www.whsmith.co.uk/products/captain-corellis-mandolin/9780749397548

https://www.waterstones.com/book/captain-corellis-mandolin/louis-de-bernieres/9780749397548

https://www.amazon.co.uk/Captain-Corellis-Mandolin-Louis-Bernieres/dp/0749397543

Edited by member 09 Apr 2018 at 18:19  | Reason: Not specified

User
Posted 08 Apr 2018 at 21:34

I feel consultants should not so readily offer an opinion which can be inaccurate and cause a patient to be demoralized when a man sometimes goes on to prove this wrong, perhaps by a living a number of additional years. Of course nobody wants to be told that they can expect a certain number of years for this to be wildly optimistic. Perhaps where pressed, a consultant could give a less definite answer, something like "if you are lucky side of average you could have x years, maybe more if you respond well to improved treatments but if you don't respond well it could be of the order of y months or years based on current science and treatments." This would provide a better and more appropriate idea of the likely parameters. and less stark predictions.

Barry
User
Posted 08 Apr 2018 at 23:58

A lot of "what if" and "could be" here, how does it help? When I asked about my prognosis way back, I was told that I would not get one. No one wants to get it wrong or be proved wrong. Later when I had a more relaxed chat with my clinician, they said that if pushed by the patient, they aways erred on the cautious side. What exactly did the consultant say when you heard "5 years" and in what context? You were in shock so may have misheard. We often suggest taking a detached other person to consultations to take notes and listen when we do not hear as we are i sack at some news. That may not be your position or case, it often is for many The Chemo person will be able to advise you further on Thursday. While it may be correct to state that your clock may not be reset to zero, research into treatment continues to make advances, new treatment options, changes ti existing treatments options continue to improve patient outcomes. Guessing that okay, you may not be THAT old when you walk along THAT seafront, but I would be looking way beyond 5 years at this stage on what information you have. I wish you both well, and best of luck on Thursday. dave

Edited by member 08 Apr 2018 at 23:58  | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 11 Apr 2018 at 08:54
Thank you for that Dave. We were possibly in a state of shock because the consultant mentioned treatment would give an extra 18 months we both thought he said ‘you’ve got 18 month’ I nearly fell off my chair. He quickly rephrased his wording. As for tomorrow I’m going to take a note pad. I haven’t a clue what questions to ask. Perhaps they will flow once we are there.

Denise x

 
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