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Is this going to be the end?

User
Posted 03 Jun 2024 at 09:30

Hi everyone

I posted a few weeks ago regarding a psa of 1356 and currently on Digarelix injections.

Scans show cells on thigh, chest, spine and skull bones and lymph nodes around the prostate. Does this mean chemo now? 73 years old, otherwise healthy man. Is this a bleak outlook now? Waiting to see the oncology team and mind working overtime! Any help would be great thanks 

User
Posted 03 Jun 2024 at 18:35

Originally Posted by: Online Community Member

Scans show cells on thigh, chest, spine and skull bones and lymph nodes around the prostate. Does this mean chemo now? 73 years old, otherwise healthy man. Is this a bleak outlook now? Waiting to see the oncology team and mind working overtime! Any help would be great thanks 

 

Sorry to hear that it's spread so extensively.  I don't know what course of action your oncology team will recommend, but this certainly does not have to be the end.

For what it's worth, I had multiple mets in my pelvis, spine, ribs etc when I was diagnosed.  I was told that I may have another 3 to 5 years after the chemo- and radiotherapy I had back in 2019.  And over 5 years later, I'm feeling well, I'm out on my motorbike when the weather's decent or walking with my wife, and doing all the things I enjoy doing.  I won't pretend it's been without hitches, but there are fantastic resources ready to help you with anything that causes problems (such as pain, etc).

I know it's hard to find any positives and see past your diagnosis, but try not to let it take you over.  Keep doing what you enjoy, see what your oncology team offers and keep going, step by step.

Wishing you all the best.   

 

User
Posted 03 Jun 2024 at 10:45

I have no personal expertise but this recent video by a prostate cancer expert is well worth watching and certainly gives hope to men in your situation, though bear in mind that it is from the USA.

https://www.youtube.com/watch?v=aJc-gG5X8zE

 

Edited by member 03 Jun 2024 at 18:42  | Reason: Not specified

User
Posted 03 Jun 2024 at 18:57

Hi Prince666,

I can’t add much to what’s already been said, but the waiting is always the worst. I know it’s very difficult but trying to stay positive really helps get you through this journey…and there are many on here who despite a poor prognosis are incredibly positive, quite inspirational in fact. I also find that at Maggies where I attend the Cancer Support Group,  and I’m wondering whether you might benefit from going along to have a chat with them if you have a Maggies Centre near you. it might not be for you(I thought it wasn’t for me either), but you won’t know unless you try it. I have gained immense support from everyone at Maggies,  as well as returning that to the many men who are newly diagnosed with PCa and other cancers.

I wish you all the best.

Derek

User
Posted 07 Jun 2024 at 06:37

Thank you for this information, I to have a motorbike which I am hoping to get out on still! I dont currently have pain and will be seeing the oncologist next week, I have been on Digarelix since mid April and have had another psa test of which I haven't had the results back as yet. I don't know if psa drops quite quickly? I'm otherwise fit and healthy, no medication for anything else. Best wishes to you 

 

User
Posted 08 Jun 2024 at 13:52

My oncologist once said something to me that really helped me:  "Don't make your life all about the disease."

You're still fit and active, so carry on doing what you do normally & enjoy while receiving your treatment.  There's no reason why you can't, unless you feel unwell on a particular day.  Personally, motorcycling has been amazing mental health therapy during my treatment and afterwards:  you have no choice but to be in the moment and not brooding about things.  If you get a bright, dry day, get out there and have a ride!

User
Posted 08 Jun 2024 at 22:05

My saviour is my ebike, it’s the one thing I can do with my aching joints without causing me issues…and I’m getting some exercise too. Burned 500 on Monday on a 32 mile ride but need to burn a few more to try and lose the 8kg I’ve put on whilst on HT.😩😩😩

I feel so good out there riding my bike and have continued throughout the winter, which in Scotland has returned with a vengeance…..in mid June🥶🥶🥶

Derek

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User
Posted 03 Jun 2024 at 10:45

I have no personal expertise but this recent video by a prostate cancer expert is well worth watching and certainly gives hope to men in your situation, though bear in mind that it is from the USA.

https://www.youtube.com/watch?v=aJc-gG5X8zE

 

Edited by member 03 Jun 2024 at 18:42  | Reason: Not specified

User
Posted 03 Jun 2024 at 18:35

Originally Posted by: Online Community Member

Scans show cells on thigh, chest, spine and skull bones and lymph nodes around the prostate. Does this mean chemo now? 73 years old, otherwise healthy man. Is this a bleak outlook now? Waiting to see the oncology team and mind working overtime! Any help would be great thanks 

 

Sorry to hear that it's spread so extensively.  I don't know what course of action your oncology team will recommend, but this certainly does not have to be the end.

For what it's worth, I had multiple mets in my pelvis, spine, ribs etc when I was diagnosed.  I was told that I may have another 3 to 5 years after the chemo- and radiotherapy I had back in 2019.  And over 5 years later, I'm feeling well, I'm out on my motorbike when the weather's decent or walking with my wife, and doing all the things I enjoy doing.  I won't pretend it's been without hitches, but there are fantastic resources ready to help you with anything that causes problems (such as pain, etc).

I know it's hard to find any positives and see past your diagnosis, but try not to let it take you over.  Keep doing what you enjoy, see what your oncology team offers and keep going, step by step.

Wishing you all the best.   

 

User
Posted 03 Jun 2024 at 18:57

Hi Prince666,

I can’t add much to what’s already been said, but the waiting is always the worst. I know it’s very difficult but trying to stay positive really helps get you through this journey…and there are many on here who despite a poor prognosis are incredibly positive, quite inspirational in fact. I also find that at Maggies where I attend the Cancer Support Group,  and I’m wondering whether you might benefit from going along to have a chat with them if you have a Maggies Centre near you. it might not be for you(I thought it wasn’t for me either), but you won’t know unless you try it. I have gained immense support from everyone at Maggies,  as well as returning that to the many men who are newly diagnosed with PCa and other cancers.

I wish you all the best.

Derek

User
Posted 07 Jun 2024 at 06:37

Thank you for this information, I to have a motorbike which I am hoping to get out on still! I dont currently have pain and will be seeing the oncologist next week, I have been on Digarelix since mid April and have had another psa test of which I haven't had the results back as yet. I don't know if psa drops quite quickly? I'm otherwise fit and healthy, no medication for anything else. Best wishes to you 

 

User
Posted 08 Jun 2024 at 13:52

My oncologist once said something to me that really helped me:  "Don't make your life all about the disease."

You're still fit and active, so carry on doing what you do normally & enjoy while receiving your treatment.  There's no reason why you can't, unless you feel unwell on a particular day.  Personally, motorcycling has been amazing mental health therapy during my treatment and afterwards:  you have no choice but to be in the moment and not brooding about things.  If you get a bright, dry day, get out there and have a ride!

User
Posted 08 Jun 2024 at 22:05

My saviour is my ebike, it’s the one thing I can do with my aching joints without causing me issues…and I’m getting some exercise too. Burned 500 on Monday on a 32 mile ride but need to burn a few more to try and lose the 8kg I’ve put on whilst on HT.😩😩😩

I feel so good out there riding my bike and have continued throughout the winter, which in Scotland has returned with a vengeance…..in mid June🥶🥶🥶

Derek

 
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