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Hormone Treatment experience

User
Posted 17 Jun 2021 at 16:21

Gleason 3+4 and I decided to go down the hormone and radiotherapy route, being concerned about the possible side effects of surgery and the risks involved at 70. The consultant surgeon suggested that if I had been 10 years younger he would have thought prostatectomy was a good idea but once over 60, I might consider the less invasive option I have just passed eight weeks since my 6 months Decapeptyl injection today and am feeling pretty good. Hving scrutinised the information booklets, I was quite apprehensive about the possibility of unpeasant side effects, especially weight gain, hot flushes/ sweats etc and possible breast enlargement, but I have managed to avoid these things.The ony effect it sems to have is to  have sligtly reduced my energy levels, but nothing I can't recover from. I take a bit more time to come to in the mornings and my 'mood' seems just a tiny bit 'flatter'. Maybe that's down to the pandemic.

I decided to take premptive action by going on a diet and have by careful eating and reduction of alcohol intake managed to lose jut a bit more than 7 kilos, somy fears of weight gain have been allayed. I have also gone down the route of drinking plenty of water and de-caffeinated tea and coffee, which were advised in one of the booklets.

Next month I will have a psa test and hope it is down from 10.5, prior to a meeting with my consultant and I hope news about my radiotherapy treatment plan.

I know that some people have had adverse reactions to hormone treatment - the consultant told me of one patient who said he couldn't face it any more, but I wanted to share my more fortunate experience because I gather from a medical friend that many people do and for those who may be embarking on this, it doesn't always have to be awful. Once I had face up to the unpleasant fact that my cancer needed treatment rather than just active surveillance, which was quie a shock, I am pleased to be on this therapy journey which, statistically has a favourable outcome. I have met others in my village who have been cured and I am keeping positive about the future. 

 

User
Posted 18 Jun 2021 at 16:45

Originally Posted by: Online Community Member

One thing I can't find is the reasoning behind having to stay on hormone treatment after radiation. If the hormone treatment leading up to and including  radiation is successful, why do we continue the Hormones for (as I understand) up to 2 years after? I assume that because the HT shrinks the cancer it makes it more manageable to target in EBRT? But if the radiation does the business why does one continue the HT - I know there must be good logic behind this.

Basically, the way it works is this: the radiation damages the DNA of all the cells in your prostate. Healthy cells can repair their DNA, but the repair mechanism of cancer cells is usually faulty, so the cancer cells eventually die. This can take quite a while to happen, which is why your PSA generally continues to fall for about 18 months after RT finishes.

HT serves a different purpose: it starves the cancer cells of the hormones they require to reproduce, so your cancer won’t spread. Hence the idea is that you stay on HT with the cancer not spreading while you’re waiting for the existing cancer cells that have been damaged by the radiation to die.

Is that any help?

Cheers,

Chris

 

User
Posted 17 Jun 2021 at 16:21

Gleason 3+4 and I decided to go down the hormone and radiotherapy route, being concerned about the possible side effects of surgery and the risks involved at 70. The consultant surgeon suggested that if I had been 10 years younger he would have thought prostatectomy was a good idea but once over 60, I might consider the less invasive option I have just passed eight weeks since my 6 months Decapeptyl injection today and am feeling pretty good. Hving scrutinised the information booklets, I was quite apprehensive about the possibility of unpeasant side effects, especially weight gain, hot flushes/ sweats etc and possible breast enlargement, but I have managed to avoid these things.The ony effect it sems to have is to  have sligtly reduced my energy levels, but nothing I can't recover from. I take a bit more time to come to in the mornings and my 'mood' seems just a tiny bit 'flatter'. Maybe that's down to the pandemic.

I decided to take premptive action by going on a diet and have by careful eating and reduction of alcohol intake managed to lose jut a bit more than 7 kilos, somy fears of weight gain have been allayed. I have also gone down the route of drinking plenty of water and de-caffeinated tea and coffee, which were advised in one of the booklets.

Next month I will have a psa test and hope it is down from 10.5, prior to a meeting with my consultant and I hope news about my radiotherapy treatment plan.

I know that some people have had adverse reactions to hormone treatment - the consultant told me of one patient who said he couldn't face it any more, but I wanted to share my more fortunate experience because I gather from a medical friend that many people do and for those who may be embarking on this, it doesn't always have to be awful. Once I had face up to the unpleasant fact that my cancer needed treatment rather than just active surveillance, which was quie a shock, I am pleased to be on this therapy journey which, statistically has a favourable outcome. I have met others in my village who have been cured and I am keeping positive about the future. 

 

User
Posted 17 Jun 2021 at 21:59

Hello David,

I was on it for nearly 2 years, but not yet got testosterone back.

I also didn't have unmanageable side effects, and chose to stay on it a bit longer than my onco required.

About 20% of men don't get hot flushes, and in many who do, they aren't a major issue, but they are serious in some cases.

I think it took a year for libido to hit the lowest level.

I have put on weight, although I've managed that quite well, and lost a tiny amount of muscle. I do quite a bit of exercise though.

User
Posted 18 Jun 2021 at 14:20

Hi David

I too have just started Hormone Treatment Gleason was 9 on one side and 5 on the other

Initially I opted for a prostatectomy but because the cancer was near to the edge of the prostate capsule and the Hormone/EBRT was considered best option... I've just turned 68.

Like you I was a little tentative about the hormone treatment because of the side effects but I guess it is what it is and fingers crossed.

I started on 28days Balcalutimide tablets for the flare and after 2 weeks had a 3 month Decapeptyl injection.

Its almost been a month now and 3 tabs left.

I have had no real noticeable effects to date but I guess its early days.

I walk/run around 5-10km most days and intend to get back into a bit of weight training when the gyms open again.

Thats great youve taken off the 7kilos - I've done about 3 kilos so far but hope to match you.

One thing I can't find is the reasoning behind having to stay on hormone treatment after radiation. If the hormone treatment leading up to and including  radiation is successful, why do we continue the Hormones for (as I understand) up to 2 years after? I assume that because the HT shrinks the cancer it makes it more manageable to target in EBRT? But if the radiation does the business why does one continue the HT - I know there must be good logic behind this.

I understand that some weight training is encouraged during HT but weights tend to encourage testosterone production also - I would have thought this would counteract slightly the HT testosterone reduction? Theres something I'm not seeing......🤓

All the best and hope things go well for both of us.....

Joe

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User
Posted 17 Jun 2021 at 21:59

Hello David,

I was on it for nearly 2 years, but not yet got testosterone back.

I also didn't have unmanageable side effects, and chose to stay on it a bit longer than my onco required.

About 20% of men don't get hot flushes, and in many who do, they aren't a major issue, but they are serious in some cases.

I think it took a year for libido to hit the lowest level.

I have put on weight, although I've managed that quite well, and lost a tiny amount of muscle. I do quite a bit of exercise though.

User
Posted 18 Jun 2021 at 14:20

Hi David

I too have just started Hormone Treatment Gleason was 9 on one side and 5 on the other

Initially I opted for a prostatectomy but because the cancer was near to the edge of the prostate capsule and the Hormone/EBRT was considered best option... I've just turned 68.

Like you I was a little tentative about the hormone treatment because of the side effects but I guess it is what it is and fingers crossed.

I started on 28days Balcalutimide tablets for the flare and after 2 weeks had a 3 month Decapeptyl injection.

Its almost been a month now and 3 tabs left.

I have had no real noticeable effects to date but I guess its early days.

I walk/run around 5-10km most days and intend to get back into a bit of weight training when the gyms open again.

Thats great youve taken off the 7kilos - I've done about 3 kilos so far but hope to match you.

One thing I can't find is the reasoning behind having to stay on hormone treatment after radiation. If the hormone treatment leading up to and including  radiation is successful, why do we continue the Hormones for (as I understand) up to 2 years after? I assume that because the HT shrinks the cancer it makes it more manageable to target in EBRT? But if the radiation does the business why does one continue the HT - I know there must be good logic behind this.

I understand that some weight training is encouraged during HT but weights tend to encourage testosterone production also - I would have thought this would counteract slightly the HT testosterone reduction? Theres something I'm not seeing......🤓

All the best and hope things go well for both of us.....

Joe

User
Posted 18 Jun 2021 at 16:05
I’ve been on Decapeptyl for 5 months. I’m 54 and had surgery at 48 but too late as had already spread through lymphatic system. I decided on no further treatment as all scans for a long time showed nothing at all and I desperately wanted to maintain my quality of life as my recovery from surgery was very good and full erectile function back. Then a scan showed cancer in bones and ribs and distant lymph nodes. PSA was 990. I had palliative RT to spine and ribs and started HT as I was told I wouldn’t be around for too long.

My experience at 5 months is quite positive to be fair but I don’t regret my choices. I’ve not put on weight or got boobs. Plenty of hot flushes which don’t bother me too much. Libido significantly lower but still have erectile function and enough libido. Lots of muscle loss and very aching legs which is the worst thing. I’ve remedied this by doing light weights and as much walking as I can manage. Good luck ok

If life gives you lemons , then make lemonade

User
Posted 18 Jun 2021 at 16:18

Thanks  and best wishes to you. 

User
Posted 18 Jun 2021 at 16:20

Good luck! Your dog will help you cope my two do. Best wishes

User
Posted 18 Jun 2021 at 16:45

Originally Posted by: Online Community Member

One thing I can't find is the reasoning behind having to stay on hormone treatment after radiation. If the hormone treatment leading up to and including  radiation is successful, why do we continue the Hormones for (as I understand) up to 2 years after? I assume that because the HT shrinks the cancer it makes it more manageable to target in EBRT? But if the radiation does the business why does one continue the HT - I know there must be good logic behind this.

Basically, the way it works is this: the radiation damages the DNA of all the cells in your prostate. Healthy cells can repair their DNA, but the repair mechanism of cancer cells is usually faulty, so the cancer cells eventually die. This can take quite a while to happen, which is why your PSA generally continues to fall for about 18 months after RT finishes.

HT serves a different purpose: it starves the cancer cells of the hormones they require to reproduce, so your cancer won’t spread. Hence the idea is that you stay on HT with the cancer not spreading while you’re waiting for the existing cancer cells that have been damaged by the radiation to die.

Is that any help?

Cheers,

Chris

 

User
Posted 18 Jun 2021 at 17:37
Pretty good explanation, Cheshire Chris!
User
Posted 18 Jun 2021 at 19:01
Weight training won't increase testosterone production because you won't have any testosterone.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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