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Locally advanced PC

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User
Posted 03 Feb 2024 at 23:27

Hi, new to the forum. December 2019 diagnosed with locally advanced prostate cancer. PSA 126. Hormone treatment then radiotherapy during Covid lockdown in 2020.


hormone treatment continued until November 2023. PSA stabilised at 0.24.


since stopping hormones in November PSA has risen to 0.8.


suffering a lot of pain constant but worse at night. Pain in all joints. GP and oncology insist pain is not connected to cancer but how do they know? I’ve had numerous blood tests but no scans since initial diagnosis. Really concerned but have no idea what to do. 

User
Posted 03 Feb 2024 at 23:39
After being diagnosed with cancer, it is easy to imagine that all illnesses and symptoms are related to that cancer. However, your PSA suggests that the RT was successful - it is expected that your PSA will rise now you have stopped the hormone treatment and your testosterone starts to kick back in. Also, advanced cancer wouldn't cause pain in all your joints.

Not good enough for your GP just to say it isn't related to the prostate cancer though - what is s/he suggesting instead? Whatever is causing your pain needs to be identified so that you can get some relief. A referral to see if you have a rheumatoid / arthritic condition would be the obvious next step.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Feb 2024 at 00:21

Hi Andy


Welcome to the forum mate.


I get awful pains in my hips, legs and lower back but it's caused by arthritis and general wear and tear. Mine often gets worse at night especially when the weather's cold and damp. The wife nicknames me 'Old barometer legs.'

User
Posted 04 Feb 2024 at 08:19

Hi Andy,


Interesting…this is the second post I’ve replied to this morning about joint pain. And I could have written this post, the only difference is that I’m still on HT…for another 516 days…..YES I’m counting! 
I have severe aching and stiffness in my legs, it’s my hips, knees and ankles. We went for a walk yesterday (about 10k steps) and this morning I am hobbling like a 90 year old. It’s eases off during the day usually and is better if I keep moving. I’m currently waiting on the result of a blood test for polymyalgia Rheumatica, but TBH I believe it’s down to this poison they keep injecting into me. I had NO problems before I started on HT, this started about 9 months into it and has got steadily worse. It really scares me that if I don’t find a solution I might have to come off Prostap before the end of 3 years because it will severely affect my QOL.  
I would hope for you that as the effects of HT wears off(hopefully🤞🤞🤞🤞) that it will improve. In the meantime I would advise to keep as active as possible, do weight bearing exercise to try and restore muscle loss caused by HT, swimming and cycling, and if you’re not a gym goer buy yourself some resistance bands and use them daily.


Good luck Andy…and if you find a solution pleas let me know🙏


Derek

User
Posted 08 Feb 2024 at 01:26

As mentioned elsewhere I always suspected my Polymyalgia Rheumatica (PMR) was related to my Prostate Cancer (PCa) but I never had ADT or RP treatment, just the surgery. It took them a year to diagnose the PMR and they found and treated kidney stones and a fracture along the way. Members on the 'Patient" site disputed the PMR/PCa connection. If you had the right bloodwork PMR should have been discounted but so many PCa sites have PMR mentions. My PCa has returned in a node and I now have doubts about the PMR treatment in that regard. Now more treatment decisions I don't have the capacity to make.

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User
Posted 03 Feb 2024 at 23:39
After being diagnosed with cancer, it is easy to imagine that all illnesses and symptoms are related to that cancer. However, your PSA suggests that the RT was successful - it is expected that your PSA will rise now you have stopped the hormone treatment and your testosterone starts to kick back in. Also, advanced cancer wouldn't cause pain in all your joints.

Not good enough for your GP just to say it isn't related to the prostate cancer though - what is s/he suggesting instead? Whatever is causing your pain needs to be identified so that you can get some relief. A referral to see if you have a rheumatoid / arthritic condition would be the obvious next step.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Feb 2024 at 00:03

Thanks Lyn, reassuring. To be fair to my GP he is trying hard to identify the cause of my pains. Loads of blood tests but all normal, referred to spinal surgery team but waiting list is 48 weeks. He’s put me on Gabapentin for the pain but it’s having little effect to be honest. 

I have another oncology appointment in March so need to know what questions to ask. 


 

User
Posted 04 Feb 2024 at 00:21

Hi Andy


Welcome to the forum mate.


I get awful pains in my hips, legs and lower back but it's caused by arthritis and general wear and tear. Mine often gets worse at night especially when the weather's cold and damp. The wife nicknames me 'Old barometer legs.'

User
Posted 04 Feb 2024 at 08:19

Hi Andy,


Interesting…this is the second post I’ve replied to this morning about joint pain. And I could have written this post, the only difference is that I’m still on HT…for another 516 days…..YES I’m counting! 
I have severe aching and stiffness in my legs, it’s my hips, knees and ankles. We went for a walk yesterday (about 10k steps) and this morning I am hobbling like a 90 year old. It’s eases off during the day usually and is better if I keep moving. I’m currently waiting on the result of a blood test for polymyalgia Rheumatica, but TBH I believe it’s down to this poison they keep injecting into me. I had NO problems before I started on HT, this started about 9 months into it and has got steadily worse. It really scares me that if I don’t find a solution I might have to come off Prostap before the end of 3 years because it will severely affect my QOL.  
I would hope for you that as the effects of HT wears off(hopefully🤞🤞🤞🤞) that it will improve. In the meantime I would advise to keep as active as possible, do weight bearing exercise to try and restore muscle loss caused by HT, swimming and cycling, and if you’re not a gym goer buy yourself some resistance bands and use them daily.


Good luck Andy…and if you find a solution pleas let me know🙏


Derek

User
Posted 08 Feb 2024 at 01:26

As mentioned elsewhere I always suspected my Polymyalgia Rheumatica (PMR) was related to my Prostate Cancer (PCa) but I never had ADT or RP treatment, just the surgery. It took them a year to diagnose the PMR and they found and treated kidney stones and a fracture along the way. Members on the 'Patient" site disputed the PMR/PCa connection. If you had the right bloodwork PMR should have been discounted but so many PCa sites have PMR mentions. My PCa has returned in a node and I now have doubts about the PMR treatment in that regard. Now more treatment decisions I don't have the capacity to make.

User
Posted 08 Feb 2024 at 01:31

Using these initials is a trap. Not RP but RT.

 
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