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Quit adt or not?

User
Posted 05 Jan 2023 at 13:52

I was diagnosed T3a L0 M 0 last March. Been on decapeptyl since April 2022.


Psa was 7.99 ,now 0.01.


Gleason 7 (3+4)


My treatment was brachytherapy plus 15 x rt.


I am struggling with the adt. I feel like a much older man. Even my walk has changed. Im irritable,  and demotivated. I walk every day , as advised. I force myself to do so and would rather sit moping.


I knew it would be hard.and i chose this tri modal therapy. But its affecting me, my relationship and my health.


So, I am thinking of not having my next injection. Due end of March. I will have been on approx one year then.


Its the T3a that is making this decision harder. I have had sight of my medical records.


My intial mri report says there is a " mild capsular bulge" and no " gross extra capsular mass"


It then gives me a provisional T rating of T3a.


However,  later notes say my treatment for PCa and an "extra capsular bulge" But there is no record of the basis for this.


I am a little confused.


My consultant says if I was T2 , it would be 6 months but as its T3 he recommends 2 years.


My post is to look for advice on finding out if a mild capsular bulge is indeed always T3a or have they erred on the side of caution and if it was, and it was just " poking its nose out" does the treatment have to be the same for all T3as ?


Thank you


 

User
Posted 05 Jan 2023 at 17:30
My oncologist was happy for me to stop HT after 18 months. He said that studies had shown there was no difference in long-term outcomes between 18 months and 2 years HT. A year might be a bit too short a time, though. Perhaps have a chat with your oncologist if possible?

Best wishes,

Chris
User
Posted 05 Jan 2023 at 19:40

Same treatment as you, and also T3a due to a bulge, but my PSA was 58.


I was originally told 18-36 months. When I got to 18 months I asked again, and was told I could stop anytime now as my PSA was <0.01 - oncologist said if my PSA had been higher, he'd want me to do the full 36 months.


As it happened, I wasn't having any issues with the HT that I didn't mind having for a bit longer, so I went on to 22 months in case it gave me an extra 1% chance of a cure.


Ask your oncologist what difference you think it would make in your case.

User
Posted 05 Jan 2023 at 21:05

My diagnosis and treatment exactly the same as yours. Mine was just labeled T3 without any letters, but MRI said extra capsular extension.


I didn't have much problem with HT so went the full two years. If it is having a big impact on your QoL then stopping is reasonable and we have a one or two members who have.


Worth considering is how HT and RT are interacting. In a fetus all cells start as stem cells, they then become organ specific cells. Hormones play a part in this. Apoptosis is a process where if a cell finds it isn't needed or is in the wrong place it commits suicide. If testosterone is present then some cells will become male genitalia, prostate etc. When on HT these cells become less active, it is almost as if the cells are thinking we are male specific cells but I think we may be in a female body. I don't think this is strong enough to cause apoptosis, but it is enough to make the cells inactive. RT does not kill cancer cells, it damages them such that when they reproduce they fail to divide correctly and then they die. Cancer cells are very bad at repairing RT damage. Prostate cells normally divide after about 6 to 24 months. So it should take about two years before most of the cancer cells have died. Some cancer cells might not divide for five or ten years, but if the RT did its job, and the cell has not repaired the RT damage it will then die.


In summary: RT is damaging the cancer cells, cancer cells are very bad at repairing the damage and HT is making the cells less active so even less able to repair the damage. No matter when you stop HT there will be damaged cancer cells which have not yet died, but they probably will die when they divide. The longer you are on HT the fewer dieing cancer cells will be left when you stop, so the less chance that one may repair the RT damage and start a new tumour.


Certainly within six months of RT there would be a lot of cells to potentially start a new tumour, the chances of any doing that are tiny, but with a lot of cells the odds are stacked against you, after one year, the number of cells has declined massively, after two years, even further.


No one knows what your risk is, but the oncology has taken a guess, based on a lot of experience. He is balancing that risk against the side effects in an average patient. You do know what your side effects are and how tolerable they are to you, so you get to make the final decision and as long as it is informed, it is the right decision even if it results in an early death.


 


 

Dave

User
Posted 05 Jan 2023 at 21:40
Sounds like you are having a rough time John.

My take on things is that HT has its biggest effect before treatment, when it shrinks the tumour by inhibiting cell division and forming a better target for RT. With HT after treatment there is a balance between damaged cells dying on their own without risk of dividing (under HT) versus dying because the cells try to divide in the absence of HT but the DNA is too damaged and cell death results.

Dave describes above in more detail the way the aim is to minimise the risk any live cancer cells escape dying, with the important conclusion that with the benefit less certain there is a harm-benefit balance which depends on the patient's side effects. You are clearly someone with bad side effects.

However none of us here can give clinical advice (and I am just making sense of things as a retired scientist). Your oncologist knows much more about your personal situation and you should ask him/her.

The other thing to say is that as I am experiencing at the moment, stopping the HT doesn't immediately restore normal hormones. In my case it is Zoladex but I think the same would be true of decapeptyl. So stopping the injections after a year might give you more like a year and a half of any benefit.
User
Posted 26 Mar 2023 at 11:57

Originally Posted by: Online Community Member
I did ask for option to have 12 week shots but gp said this was only licensed for sex offenders!


12 weekly is the most common Decapeptyl dose used. The 24 weekly only really took off during COVID, when the manufacturer started advertising it to clinicians as needing fewer visits.

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User
Posted 05 Jan 2023 at 17:30
My oncologist was happy for me to stop HT after 18 months. He said that studies had shown there was no difference in long-term outcomes between 18 months and 2 years HT. A year might be a bit too short a time, though. Perhaps have a chat with your oncologist if possible?

Best wishes,

Chris
User
Posted 05 Jan 2023 at 19:40

Same treatment as you, and also T3a due to a bulge, but my PSA was 58.


I was originally told 18-36 months. When I got to 18 months I asked again, and was told I could stop anytime now as my PSA was <0.01 - oncologist said if my PSA had been higher, he'd want me to do the full 36 months.


As it happened, I wasn't having any issues with the HT that I didn't mind having for a bit longer, so I went on to 22 months in case it gave me an extra 1% chance of a cure.


Ask your oncologist what difference you think it would make in your case.

User
Posted 05 Jan 2023 at 21:05

My diagnosis and treatment exactly the same as yours. Mine was just labeled T3 without any letters, but MRI said extra capsular extension.


I didn't have much problem with HT so went the full two years. If it is having a big impact on your QoL then stopping is reasonable and we have a one or two members who have.


Worth considering is how HT and RT are interacting. In a fetus all cells start as stem cells, they then become organ specific cells. Hormones play a part in this. Apoptosis is a process where if a cell finds it isn't needed or is in the wrong place it commits suicide. If testosterone is present then some cells will become male genitalia, prostate etc. When on HT these cells become less active, it is almost as if the cells are thinking we are male specific cells but I think we may be in a female body. I don't think this is strong enough to cause apoptosis, but it is enough to make the cells inactive. RT does not kill cancer cells, it damages them such that when they reproduce they fail to divide correctly and then they die. Cancer cells are very bad at repairing RT damage. Prostate cells normally divide after about 6 to 24 months. So it should take about two years before most of the cancer cells have died. Some cancer cells might not divide for five or ten years, but if the RT did its job, and the cell has not repaired the RT damage it will then die.


In summary: RT is damaging the cancer cells, cancer cells are very bad at repairing the damage and HT is making the cells less active so even less able to repair the damage. No matter when you stop HT there will be damaged cancer cells which have not yet died, but they probably will die when they divide. The longer you are on HT the fewer dieing cancer cells will be left when you stop, so the less chance that one may repair the RT damage and start a new tumour.


Certainly within six months of RT there would be a lot of cells to potentially start a new tumour, the chances of any doing that are tiny, but with a lot of cells the odds are stacked against you, after one year, the number of cells has declined massively, after two years, even further.


No one knows what your risk is, but the oncology has taken a guess, based on a lot of experience. He is balancing that risk against the side effects in an average patient. You do know what your side effects are and how tolerable they are to you, so you get to make the final decision and as long as it is informed, it is the right decision even if it results in an early death.


 


 

Dave

User
Posted 05 Jan 2023 at 21:40
Sounds like you are having a rough time John.

My take on things is that HT has its biggest effect before treatment, when it shrinks the tumour by inhibiting cell division and forming a better target for RT. With HT after treatment there is a balance between damaged cells dying on their own without risk of dividing (under HT) versus dying because the cells try to divide in the absence of HT but the DNA is too damaged and cell death results.

Dave describes above in more detail the way the aim is to minimise the risk any live cancer cells escape dying, with the important conclusion that with the benefit less certain there is a harm-benefit balance which depends on the patient's side effects. You are clearly someone with bad side effects.

However none of us here can give clinical advice (and I am just making sense of things as a retired scientist). Your oncologist knows much more about your personal situation and you should ask him/her.

The other thing to say is that as I am experiencing at the moment, stopping the HT doesn't immediately restore normal hormones. In my case it is Zoladex but I think the same would be true of decapeptyl. So stopping the injections after a year might give you more like a year and a half of any benefit.
User
Posted 06 Jan 2023 at 12:23

Thanks for the replies. Great information.  I learn something new every day with this blooming disease!


I will be speaking to the oncologist further.


His last message ( 3 months ago) was that 2 years is preferable but if i did quit,  it would not be unreasonable. 


I'm also going to ask my GP to prescribe a 12 week dose rather than the 24, as I feel the thought of the six months is a huge black cloud. Maybe doing it in 3 month stints will make it more doable.


I am certain to quit on 18 months.


 


 


 

Edited by member 06 Jan 2023 at 12:24  | Reason: Not specified

User
Posted 26 Mar 2023 at 11:39

Update: Spoke to head of clatterbridge oncology last week. No idea where my usual consultant was.


Psa 0.01 since December.


She reviewed the scans and dx. We spoke about the treatment i had. Brachytherapy and rt. She says the dose escalated Brachytherapy can impact length of time for adt.


We discussed how adt was affecting me. She says i was " borderline " 6 months or24 months adt.(We had a chat about generalisation of treatment pathways and how difficult it is to personalise it)


She says stopping adt is acceptable. It will take 12- 18 months to wear off.


So somewhat surprised,  excited but terrified my safety net is going.( if i agree)


I am having a 4 week shot next week then potentially stopping. I was struggling with adt and changed to 4 week shots so any decision to stop worked better. I did ask for option to have 12 week shots but gp said this was only licensed for sex offenders!


 


 


 

User
Posted 26 Mar 2023 at 11:57

Originally Posted by: Online Community Member
I did ask for option to have 12 week shots but gp said this was only licensed for sex offenders!


12 weekly is the most common Decapeptyl dose used. The 24 weekly only really took off during COVID, when the manufacturer started advertising it to clinicians as needing fewer visits.

 
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