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Thinking of stopping Prostap injections

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User
Posted 02 Oct 2024 at 16:20

Has anyone had experience of stopping Prostap injections after having them for 2 years. I have a Gleeson score of 3+4 and PSA of 0.1.

User
Posted 02 Oct 2024 at 20:35

Hi Derek,


So, you have not had RT? That’s a difference from me. I was on a curative path but I’m not sure if you are?


If your are on lifelong ADT and doing well, you might be able to go on a hormone holiday to allow you to recover a bit. I really think you need to speak with your Oncologist. In the meantime do as many weight bearing exercise as possible. Walking is good, maybe walk several times a day if you can only manage 20 mins? try swimming, it’s good for the joints. If you’re not a gym goer, buy some resistance bands…there are a huge number of strengthening exercises you can do with them. I found that when I was most lacking in energy, my ebike was my saviour. I could still go out on that and get exercise without feeling knackered when I came back.


Derek.


 

User
Posted 02 Oct 2024 at 20:37
User
Posted 02 Oct 2024 at 21:23

I am assuming you are metastatic, if you aren't then radiotherapy could probably cure you and that treatment should be persued.


Excluding prostate cancer, the life expectancy of a man who has already reached 82 is another 8 years. I don't know whether you are above or below average health for your age, that will make a difference to your life expectancy.


Life expectancy for metastatic prostate cancer if being treated is also about 8 years.


So it is likely you will die at 90 and it is about 50/50 whether it will be prostate cancer or something else that kills you.


If you stop treatment then your life expectancy probably drops to about 4 years. You will almost certainly die from prostate cancer.


If you stopped HT now you would probably live a few more years with no symptoms, but at sometime you probably would develop symptoms and they can be quite severe, urinary tract problems, brittle bones, spinal chord compression leading to paralysis. Other people have been known to have no symptoms until the week before they die.


It may be that restarting HT once you develop symptoms will put the cancer on hold for many years and you will recover from any symptoms you have developed. I think that would be a risky path, but if you hate HT it mighty be a good choice.


I can't imagine your oncologist would be happy with a unilateral decision to stop HT, their job is to stop you dieing from cancer. A discussion about intermittent hormone therapy may be the way to start the conversation.


 

Dave

User
Posted 02 Oct 2024 at 22:41

Originally Posted by: Online Community Member
I can't imagine your oncologist would be happy with a unilateral decision to stop HT, their job is to stop you dieing from cancer.


This isn't correct. Their job is to advise and support you in your choice of options, which always includes no treatment. I think intermittent hormone therapy, or as Dave mentions, stopping hormone therapy until you get side effects (unless your PSA is rising so quickly side effects are surely imminent) are both strategies you could discuss with your oncologist.


It might also be an idea to ask if there's a radiotherapy option to slow things down, but of course, that will come with other side potential effects.

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User
Posted 02 Oct 2024 at 16:40

What was your duration meant to be?


What was your initial PSA, staging, and treatment?


Many people stop at 2 years or even earlier, but it depends on their diagnosis and risk.


For time-limited hormone therapy on a curative treatment path, the max is 3 years.


Is there a specific reason you want to stop (early, I presume), such as a specific side effect?

Edited by member 02 Oct 2024 at 16:41  | Reason: Not specified

User
Posted 02 Oct 2024 at 17:22

OMG Derek, what a coincidence. I’m Derek as well(nickname Decho). And the answer is yes! Me!


As you’ve just joined you may not have ready about my journey. I was PSA 36, Gleason 7(4+3), T3BN0M0.


I was to be on Prostap for 3 years, but after 2 I stopped because of severe side effects, the worst being joint pain…I couldn’t get out a chair at one point and my legs would keep giving way. I spoke to my CNS who then contacted my Oncologist, who after consideration said he was happy for me to stop HT after 2 years as my PSA was <0.1 (undetectable), and had been for 6 months.


I am amazed at how much better I feel since my last injection 6 months ago, and my joint pain has almost gone, my energy levels have recovered as well. My latest test result last week was PSA <0.1 and Testosterone <0.2, so both undetectable.


My advice would be to speak to your CNS about it, and don’t stay on ADT a day longer than absolutely necessary especially if you’re suffering from severe side effects.


Good luck and feel free to contact me if you have any questions.


Derek

User
Posted 02 Oct 2024 at 18:48

Andy62
Diagnosed September 2019 with a PSA of 12.7 aged 82 and placed on a watchful and wait pathway. prescribed Finasteride  5mg. July 2020 PSA the same. November 2022 Diagnosed T3/T4 with a PSA of 23 equivalent to 46 because of Finasteride. Put on Prostap with a prostate size of 45cc.  Had TURPS op December 2022. 16 Feb 2023 PSA 1 and the cancers seemed to be shrinking. Since then PSA  has been 0.1. main reason to stop the injections is because of a lack of energy and difficulty walking for longer than 20 minutes without a rest.

User
Posted 02 Oct 2024 at 20:06
Hi Derek,
There are a number of Conversations on here regarding stopping HT early as Decho, and Andy have mentioned.

I don’t know how to link back but there was a Coversation on this site : 26 October 2033 “ Stopping HT injections “ : and this gives links to research where outcomes between 36 months and 18 months of HT were similar. Try and look this up. You can also google it and you will find many references to the paper.

There must no doubt be a bit more in it, as Andy mentions, otherwise why do Onco’s still use 36 months in the UK? So obviously your Onco is the person to advise you.

Chris



User
Posted 02 Oct 2024 at 20:07
2023!
User
Posted 02 Oct 2024 at 20:35

Hi Derek,


So, you have not had RT? That’s a difference from me. I was on a curative path but I’m not sure if you are?


If your are on lifelong ADT and doing well, you might be able to go on a hormone holiday to allow you to recover a bit. I really think you need to speak with your Oncologist. In the meantime do as many weight bearing exercise as possible. Walking is good, maybe walk several times a day if you can only manage 20 mins? try swimming, it’s good for the joints. If you’re not a gym goer, buy some resistance bands…there are a huge number of strengthening exercises you can do with them. I found that when I was most lacking in energy, my ebike was my saviour. I could still go out on that and get exercise without feeling knackered when I came back.


Derek.


 

User
Posted 02 Oct 2024 at 20:37
User
Posted 02 Oct 2024 at 20:43

OK, so you're on lifetime hormone therapy.


However, you could ask about trying intermittent hormone therapy. In this case, when your PSA gets low like it is, you come off hormone therapy. You stay off the hormone therapy until your PSA gets to some level decided by you and your oncologist, such as maybe 5 or 10. Then you go back on to bring the PSA back down to 0.1, and repeat this cycle. This works if your PSA only rises slowly when you come off hormone therapy, in which case they spend more time off hormone therapy than on it. It's not suitable for people with rapidly rising PSA or symptoms of the cancer.

User
Posted 02 Oct 2024 at 21:23

I am assuming you are metastatic, if you aren't then radiotherapy could probably cure you and that treatment should be persued.


Excluding prostate cancer, the life expectancy of a man who has already reached 82 is another 8 years. I don't know whether you are above or below average health for your age, that will make a difference to your life expectancy.


Life expectancy for metastatic prostate cancer if being treated is also about 8 years.


So it is likely you will die at 90 and it is about 50/50 whether it will be prostate cancer or something else that kills you.


If you stop treatment then your life expectancy probably drops to about 4 years. You will almost certainly die from prostate cancer.


If you stopped HT now you would probably live a few more years with no symptoms, but at sometime you probably would develop symptoms and they can be quite severe, urinary tract problems, brittle bones, spinal chord compression leading to paralysis. Other people have been known to have no symptoms until the week before they die.


It may be that restarting HT once you develop symptoms will put the cancer on hold for many years and you will recover from any symptoms you have developed. I think that would be a risky path, but if you hate HT it mighty be a good choice.


I can't imagine your oncologist would be happy with a unilateral decision to stop HT, their job is to stop you dieing from cancer. A discussion about intermittent hormone therapy may be the way to start the conversation.


 

Dave

User
Posted 02 Oct 2024 at 22:41

Originally Posted by: Online Community Member
I can't imagine your oncologist would be happy with a unilateral decision to stop HT, their job is to stop you dieing from cancer.


This isn't correct. Their job is to advise and support you in your choice of options, which always includes no treatment. I think intermittent hormone therapy, or as Dave mentions, stopping hormone therapy until you get side effects (unless your PSA is rising so quickly side effects are surely imminent) are both strategies you could discuss with your oncologist.


It might also be an idea to ask if there's a radiotherapy option to slow things down, but of course, that will come with other side potential effects.

User
Posted 06 Oct 2024 at 15:42

I would like to thank you all for your replies and advice.


My journey started with a visit to my GP with an enlarged prostate and a PSA of 12.7 and referred within 7 days to see a cancer specialist unit and saw a doctor and based on his findings he said I might have an underlying prostate cancer and radiotherapy would bring me no benefit. Because of my age, 82, he suggested a watchful wait pathway and prescribe Finasteride 5mg. The usual statement that I would not die from it but with it.

My PSA was steady for a year to eighteen months but then started to increase until approached 20 but because of the Finasteride is was really 40.

November 2022 I had a CT Scan which showed the cancer had spread and Bone scan which was fine and put on HT.. February 2023 after 3 months of HT the cancers had shrunk because of the treatment. My PSA  is now 0.1. I am now 87 and have my next injection this coming Thursday and will decide what my next move is, maybe discussing, with my urology department,  a holiday from injections in the new year.
 
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