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Prognosis and what the best outcome might look like

User
Posted 20 Nov 2022 at 19:14

As you’ll see from my Biog. I have advanced PC with Gleason 5 + 4 which has metastasized into the lymph nodes in my rectum. I’m just a few months into my hormone treatment with Prostap + Abiraterone + Prednisolone and start 7.5 weeks of radiotherapy in January.


I have had a discussion with my Oncologist (who I really rate) about prognosis so I think I have a realistic view of the stats etc.


Being a natural optimist (despite having lived through 15 years of caring for my late wife and 2022 being the year from hell for my family), I’d like to get a handle on the art of the possible.


Whilst I can’t control my cancer and am reliant on the meds, treatment and medical team to do that, I will do everything I can do put me in the best shape to deal with it. I have cut down my alcohol in take (which was not bad before); I am a very active walker and undergo an exercise regime designed by my family’s personal trainer who is a professional S & C Coach; I cycle quite a bit; I am making use of a programme with a nutritionalist from my private medical insurance company to fine tune what is already a pretty healthy diet; I am continuing to see a psychotherapist who has helped me for the last 15 years and, despite having just retired, I have a busy and mentally stimulating life with a number of Trustee and Governor positions I hold. I am due to hold a major local civic role in 2025.


Being a Chartered Accountant and Chartered Tax Adviser, I am working to make sure that eventually I “die tidily” making everything as easy as possible for my two adult children in dealing with my finances, our small farm and the forthcoming impact of the brain disease on the next generation (which we know is coming).


After many years of living with a genetically inherited degenerative brain disease in my immediate family, I am firmly on the page of enjoying every day that I and my fantastic family can do (including my 7 month old first grandchild). I have a wonderful small group of very supportive friends and have various adventures booked up or being planned with them (for example driving to Classic Le Mans next year in my classic car) and walking the next stage of the South West Coast Path next September. But just a chat down in the pub, a local walk or a game of golf are all precious moments.


I am a planner at heart so I want to plan for the worst but live life and conduct myself in the hope of the best - and I guess that means hoping to be an outlier on those stats of survival. I’ve read lots (as I’m sure many of us on here do) but there’s something I cannot find.


What is the longest anyone has ever survived with my level of diagnosis? Any thoughts would be welcome.


(And thank you to everyone who partakes in this forum, I find it incredibly helpful reading the questions and responses on here. The sense of community and camaraderie is enormously powerful).

User
Posted 20 Nov 2022 at 19:14

As you’ll see from my Biog. I have advanced PC with Gleason 5 + 4 which has metastasized into the lymph nodes in my rectum. I’m just a few months into my hormone treatment with Prostap + Abiraterone + Prednisolone and start 7.5 weeks of radiotherapy in January.


I have had a discussion with my Oncologist (who I really rate) about prognosis so I think I have a realistic view of the stats etc.


Being a natural optimist (despite having lived through 15 years of caring for my late wife and 2022 being the year from hell for my family), I’d like to get a handle on the art of the possible.


Whilst I can’t control my cancer and am reliant on the meds, treatment and medical team to do that, I will do everything I can do put me in the best shape to deal with it. I have cut down my alcohol in take (which was not bad before); I am a very active walker and undergo an exercise regime designed by my family’s personal trainer who is a professional S & C Coach; I cycle quite a bit; I am making use of a programme with a nutritionalist from my private medical insurance company to fine tune what is already a pretty healthy diet; I am continuing to see a psychotherapist who has helped me for the last 15 years and, despite having just retired, I have a busy and mentally stimulating life with a number of Trustee and Governor positions I hold. I am due to hold a major local civic role in 2025.


Being a Chartered Accountant and Chartered Tax Adviser, I am working to make sure that eventually I “die tidily” making everything as easy as possible for my two adult children in dealing with my finances, our small farm and the forthcoming impact of the brain disease on the next generation (which we know is coming).


After many years of living with a genetically inherited degenerative brain disease in my immediate family, I am firmly on the page of enjoying every day that I and my fantastic family can do (including my 7 month old first grandchild). I have a wonderful small group of very supportive friends and have various adventures booked up or being planned with them (for example driving to Classic Le Mans next year in my classic car) and walking the next stage of the South West Coast Path next September. But just a chat down in the pub, a local walk or a game of golf are all precious moments.


I am a planner at heart so I want to plan for the worst but live life and conduct myself in the hope of the best - and I guess that means hoping to be an outlier on those stats of survival. I’ve read lots (as I’m sure many of us on here do) but there’s something I cannot find.


What is the longest anyone has ever survived with my level of diagnosis? Any thoughts would be welcome.


(And thank you to everyone who partakes in this forum, I find it incredibly helpful reading the questions and responses on here. The sense of community and camaraderie is enormously powerful).

User
Posted 21 Nov 2022 at 13:50
Five year survival is common; ten years is not that uncommon. Unfortunately it just can't be predicted how long it will take for the cancer to become resistant to each drug; in some patients HT alone can hold off the cancer for years, while in others it's only a few months.

Best wishes,

Chris
User
Posted 21 Nov 2022 at 13:57

Avoid Google search results relating to survival rates and I suggest focusing on more positive expectations until you are told by your medical team otherwise.


My outlook at stage 4 with low burden bone metastasis, I personally estimate I may have between 5 and 10 years. Maybe less, maybe more. Impossible to know.


 I’m told that men have lasted 15+ years but they are I believe somewhat rare  


Good luck.

Edited by member 21 Nov 2022 at 13:59  | Reason: Not specified

User
Posted 21 Nov 2022 at 14:07
Hi my OH was diagnosed at 55 with scores of 4+5 N1M1 spread to lymph nodes ,that was 7 yrs ago . He’s PSA is undetectable,and he’s still working full time .
Hopefully this will go on for a lot longer .
Best wishes
Debby
User
Posted 21 Nov 2022 at 17:44
Treatments over recent years have been refined and expanded including new drugs or better combinations of drugs which means men living longer, another unquantifiable factor. Great attitude of D Bear.
Barry
User
Posted 21 Nov 2022 at 18:06

I agree Barry, great attitude D Bear! 

User
Posted 21 Nov 2022 at 21:58
We have a couple of members here who were diagnosed with metastatic PCa 15/18 years ago and are still living well. Men with lymph mets / bone mets tend to do better than men with lung, liver or brain mets. If your cancer is adenocarcinoma and your PSA responds well in these early days, aiming for a good 10 years is not unreasonable.

If your cancer was a rarer type such as small cell carcinoma or one of the sarcomas, then 2 - 3 years would be an achievement - reasonable to assume that does not apply to you as you have been put on HT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 21 Nov 2022 at 13:50
Five year survival is common; ten years is not that uncommon. Unfortunately it just can't be predicted how long it will take for the cancer to become resistant to each drug; in some patients HT alone can hold off the cancer for years, while in others it's only a few months.

Best wishes,

Chris
User
Posted 21 Nov 2022 at 13:57

Avoid Google search results relating to survival rates and I suggest focusing on more positive expectations until you are told by your medical team otherwise.


My outlook at stage 4 with low burden bone metastasis, I personally estimate I may have between 5 and 10 years. Maybe less, maybe more. Impossible to know.


 I’m told that men have lasted 15+ years but they are I believe somewhat rare  


Good luck.

Edited by member 21 Nov 2022 at 13:59  | Reason: Not specified

User
Posted 21 Nov 2022 at 14:07
Hi my OH was diagnosed at 55 with scores of 4+5 N1M1 spread to lymph nodes ,that was 7 yrs ago . He’s PSA is undetectable,and he’s still working full time .
Hopefully this will go on for a lot longer .
Best wishes
Debby
User
Posted 21 Nov 2022 at 17:44
Treatments over recent years have been refined and expanded including new drugs or better combinations of drugs which means men living longer, another unquantifiable factor. Great attitude of D Bear.
Barry
User
Posted 21 Nov 2022 at 18:06

I agree Barry, great attitude D Bear! 

User
Posted 21 Nov 2022 at 21:58
We have a couple of members here who were diagnosed with metastatic PCa 15/18 years ago and are still living well. Men with lymph mets / bone mets tend to do better than men with lung, liver or brain mets. If your cancer is adenocarcinoma and your PSA responds well in these early days, aiming for a good 10 years is not unreasonable.

If your cancer was a rarer type such as small cell carcinoma or one of the sarcomas, then 2 - 3 years would be an achievement - reasonable to assume that does not apply to you as you have been put on HT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Nov 2022 at 11:52

Thanks Lyn that's very helpful. Yes Adenocarcinoma (biog updated) and so far PSA reaction to meds has been good.

 
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