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ADT or Orchidectomy?

User
Posted 28 Jul 2023 at 18:14

I am 77 and have been on ADT now for six years since diagnosis and following surgery.  My PSA has, thankfully, remained undetectable.  I had a RP but unfortunately the subsequent PSMA scan showed some remaining micro lymph node involvement so am on Decapeptyl for life. Since I had a (very) radical prostatectomy with no nerve sparing I have no remaining sexual function, added to the fact that both my penis and testicles have atrophied significantly because of the ADT.  I am starting to wonder whether I might just as well have an orchidectomy and save the hassle of regular six monthly Decapeptyl injections.  Generally I prefer not to inject substances into my body if I can avoid it.  Are there any contra-indications to physical castration that I am missing?

User
Posted 29 Jul 2023 at 19:06

This was one of the first questions I asked my oncologist, during that early phase when you want everything whipping out if it saves you (I'm T4 N1 M1b). The reply was "why would you want that!?". Back then, 3 months ago, I wasn't sure of an answer, but now I can think of 3:


1. If the nurse injects into blood and not fat then I might not receive the full 28-days HT protection. The drug's instruction leaflet says to withdraw some solution and check for blood in the syringe and discard the whole thing if there is. None of the nurses do this, nor do online training videos, it's just treated like a standard subcutaneous injection, like anti-blood clotting agent. My last inj. left a massive bruise with blotchy reddening at the skin surface, besides the usual swelling lasting 10 days, so I'm awaiting my next PSA to see if this affected things.


2. The disease and the HT can make you forgetful. I'm also on Apalutamide (Erleada) and that is one of its side-effects, although for me the main issue has been chronic exhaustion, which I'm hoping is a phase I will pass through as it's becoming an issue of QoL. The glossy booklet for the drug advises you have your partner remind you to take the pills, but I live alone, and you must take them at the same time each day or you may under or 'overdose' in terms of the therapeutic benefit. Similarly it is left to me to arrange my Degarelix inj. each month, making the appointment, ordering the 'script (this can be a nightmare), collecting it and taking it to the nurse as an injectible for them to mix up. If I had my doo-dah's out there'd be none of this palaver; I'd just be forgetful without risk of my testosterone levels and PSA rising.


3. Having found a Management Plan document online for my NHS region, which appears to suggest that patients should be moved off Degarelix after 6 months and onto something cheaper, saving I think around £600 per patient, I'd like to be certain that the efficacy of the new regime was as good. If my testicular-particulars were out there'd be none of these cost-saving concerns. I next see the onco in October, which will be 6 months from first injection, so will await to see if she suggests I change med's then.


Against having the procedure - and I claim no medical expertise here, only referencing what I have read, but an orchidectomy is said to remove 90-95% of testosterone, the adrenal glands will keep producing some, and some patients may need a further procedure, adrenal ablation, if this becomes an issue? If you're older and your cancer's not as advanced or as aggressive then this is a risk you can possibly afford to take, along with regular blood tests, but not someone in my position.

Edited by member 29 Jul 2023 at 19:23  | Reason: Not specified

User
Posted 29 Jul 2023 at 01:28

Hi


I went for the chop at the tender age of 58!  With advanced prostate cancer I was told I would be on ADT for life, so just like you say thought why bother with the injections!  With regard to sex etc the ADT/orchidectomy have the same effect - possible, but no longer have any motivation. My concern, other than the faf of injections, was that the levels of ADT must vary over the 3 months, but with an operation there's no testicular testosterone.


No downsides that I can see. Still have hot flushes and tiredness, but this is probably mainly due to the apalutamide pills.


Go for it!

User
Posted 28 Jul 2023 at 18:14

I am 77 and have been on ADT now for six years since diagnosis and following surgery.  My PSA has, thankfully, remained undetectable.  I had a RP but unfortunately the subsequent PSMA scan showed some remaining micro lymph node involvement so am on Decapeptyl for life. Since I had a (very) radical prostatectomy with no nerve sparing I have no remaining sexual function, added to the fact that both my penis and testicles have atrophied significantly because of the ADT.  I am starting to wonder whether I might just as well have an orchidectomy and save the hassle of regular six monthly Decapeptyl injections.  Generally I prefer not to inject substances into my body if I can avoid it.  Are there any contra-indications to physical castration that I am missing?

User
Posted 29 Jul 2023 at 01:00

I don't know for sure, but I can't fault your logic. The only disadvantage I can see is if medical science advanced and your incurable cancer became curable with a new treatment. I suspect that won't happen in your lifetime.

Dave

User
Posted 29 Jul 2023 at 20:39

Fascinating answer Eurocentric, I think if I had to be put on ADT permanently this is something I would look into.


I wonder How many of the side effects (flushes, joint pain, brain fog, loss of libido, anxiety) are down to loss of Testosterone and how many are caused directly by the drug? Every time I get a new injection I seem to get a new side effect and some subside a little…my hot flushes seem a bit better since my last jag.


I’m on Sertraline for anxiety which was brought on by HT. I’m not sure how much of my loss of libido are due to the sertraline and how much loss of testosterone? I suspect I won’t know until I stop one of them and I’m certainly not stopping the sertraline at this anxious time of my ordeal….and I’ve got another 2 years of HT to look forward to.😟

User
Posted 29 Jul 2023 at 23:14

Hi,


I had my testicles removed in June 2022 at age 65 after I was prescribed ADT for life. I am happy with the outcome.


In my experience the side effects have been minimal compared to when I was having 3 monthly Zoladex. Hot flashes are the only side effect that seems to be about the same intensity though less frequent I think.


It's worth consideration.


Regards


John

User
Posted 31 Jul 2023 at 17:52

Yes, of course, but as I said, my GP practice’s computer gave the nurse a 26 week interval since the Decapeptyl packet says ‘6 months’!! I know it is 24 weeks but she doubted me until I showed her the Decapeptyl leaflet.  
The issue is that a ‘month’ is not absolutely defined in UK medical practice or so it seems.  My GP practice assumed that,  “If a year is 12 months then six months is half a year . If there are 52 weeks in year then there are 26 weeks in six months”!!  However my Denosumab osteoporosis injection is every six months and the company says that means every 26 weeks! Hey Ho!!


 

User
Posted 09 Aug 2023 at 12:47

Very interesting post Amarokada. I didn’t realise about subcapsular. Also interesting to hear about the hot flushes being reduced. I would describe hot flushes as a nuisance but I can live with them. More concerning is the stiffness and aches cause by Prostap 3…..or is it caused by the lack of testosterone? I have no idea. I’ve been doing lots of exercise, gym, cycling, walking and swimming..but it doesn’t seem to have made much difference. Certainly if I had to be on long term HT I would consider this rather than the 3 monthly injections. I guess the risk is though that a new treatment will come along which will make things easier….and of course you can’t have an orchidectomy holiday as you can with HT.

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User
Posted 29 Jul 2023 at 01:00

I don't know for sure, but I can't fault your logic. The only disadvantage I can see is if medical science advanced and your incurable cancer became curable with a new treatment. I suspect that won't happen in your lifetime.

Dave

User
Posted 29 Jul 2023 at 01:10
We used to have a member here (Alex) who came to the Leicester meet-up every year - he chose orchiectomy and it served him well. There are others on here who have also chosen the surgical route but not many - you may find some of their posts by using the search function although it isn't very easy to navigate. Search under both spellings as orchiectomy seems more popular with medics these days
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Jul 2023 at 01:28

Hi


I went for the chop at the tender age of 58!  With advanced prostate cancer I was told I would be on ADT for life, so just like you say thought why bother with the injections!  With regard to sex etc the ADT/orchidectomy have the same effect - possible, but no longer have any motivation. My concern, other than the faf of injections, was that the levels of ADT must vary over the 3 months, but with an operation there's no testicular testosterone.


No downsides that I can see. Still have hot flushes and tiredness, but this is probably mainly due to the apalutamide pills.


Go for it!

User
Posted 29 Jul 2023 at 19:06

This was one of the first questions I asked my oncologist, during that early phase when you want everything whipping out if it saves you (I'm T4 N1 M1b). The reply was "why would you want that!?". Back then, 3 months ago, I wasn't sure of an answer, but now I can think of 3:


1. If the nurse injects into blood and not fat then I might not receive the full 28-days HT protection. The drug's instruction leaflet says to withdraw some solution and check for blood in the syringe and discard the whole thing if there is. None of the nurses do this, nor do online training videos, it's just treated like a standard subcutaneous injection, like anti-blood clotting agent. My last inj. left a massive bruise with blotchy reddening at the skin surface, besides the usual swelling lasting 10 days, so I'm awaiting my next PSA to see if this affected things.


2. The disease and the HT can make you forgetful. I'm also on Apalutamide (Erleada) and that is one of its side-effects, although for me the main issue has been chronic exhaustion, which I'm hoping is a phase I will pass through as it's becoming an issue of QoL. The glossy booklet for the drug advises you have your partner remind you to take the pills, but I live alone, and you must take them at the same time each day or you may under or 'overdose' in terms of the therapeutic benefit. Similarly it is left to me to arrange my Degarelix inj. each month, making the appointment, ordering the 'script (this can be a nightmare), collecting it and taking it to the nurse as an injectible for them to mix up. If I had my doo-dah's out there'd be none of this palaver; I'd just be forgetful without risk of my testosterone levels and PSA rising.


3. Having found a Management Plan document online for my NHS region, which appears to suggest that patients should be moved off Degarelix after 6 months and onto something cheaper, saving I think around £600 per patient, I'd like to be certain that the efficacy of the new regime was as good. If my testicular-particulars were out there'd be none of these cost-saving concerns. I next see the onco in October, which will be 6 months from first injection, so will await to see if she suggests I change med's then.


Against having the procedure - and I claim no medical expertise here, only referencing what I have read, but an orchidectomy is said to remove 90-95% of testosterone, the adrenal glands will keep producing some, and some patients may need a further procedure, adrenal ablation, if this becomes an issue? If you're older and your cancer's not as advanced or as aggressive then this is a risk you can possibly afford to take, along with regular blood tests, but not someone in my position.

Edited by member 29 Jul 2023 at 19:23  | Reason: Not specified

User
Posted 29 Jul 2023 at 20:39

Fascinating answer Eurocentric, I think if I had to be put on ADT permanently this is something I would look into.


I wonder How many of the side effects (flushes, joint pain, brain fog, loss of libido, anxiety) are down to loss of Testosterone and how many are caused directly by the drug? Every time I get a new injection I seem to get a new side effect and some subside a little…my hot flushes seem a bit better since my last jag.


I’m on Sertraline for anxiety which was brought on by HT. I’m not sure how much of my loss of libido are due to the sertraline and how much loss of testosterone? I suspect I won’t know until I stop one of them and I’m certainly not stopping the sertraline at this anxious time of my ordeal….and I’ve got another 2 years of HT to look forward to.😟

User
Posted 29 Jul 2023 at 22:12

Nevis,


Before going down this road, I would go back to your oncologist and ask if there are any new treatments available with curative intent. A small number of mets can now be treated with SBRT (pencil thin radiotherapy beams), and if that was available for you, there's a chance of being cured and not needing to be on ADT. If your hospital doesn't offer this, you will need to ask for a referral to a hospital which does for a second opinion, since your local oncologists will probably only know exactly what's available in this respect if they offer it.


Also, don't get too hung up on switching hormone therapy injections. They are all similarly effective in most people, although sometimes one doesn't work for a specific patient, but I'm not aware any of them are more liable to this than any others. You could certainly ask for a Testosterone test before and after any change. You mention injection site discomfort. My GP surgery prefers Zoladex because they say it causes the fewest injection site issues.

If you're up to it, you could ask to do your own injections and then know how to do them correctly. That's what I did while on Zoladex. Although I was worried I'd get someone who didn't know how to do it properly having read some cases here, that never happened to me. However, during COVID it got increasingly difficult to book an appointment on the right day, and I decided I wasn't playing that game anymore. I got the nurse to observe me doing it once, and after that, I did all my own, which took a load of hassle out, and wasn't painful.

Edited by member 29 Jul 2023 at 22:43  | Reason: Not specified

User
Posted 29 Jul 2023 at 23:14

Hi,


I had my testicles removed in June 2022 at age 65 after I was prescribed ADT for life. I am happy with the outcome.


In my experience the side effects have been minimal compared to when I was having 3 monthly Zoladex. Hot flashes are the only side effect that seems to be about the same intensity though less frequent I think.


It's worth consideration.


Regards


John

User
Posted 30 Jul 2023 at 04:39
I know it's anecdotal but I have owned several castrated dogs and horses, they seem just as happy and perhaps more content as the intact versions.
User
Posted 30 Jul 2023 at 17:47

Interesting thread.  I think I'd be asking how likely is it that new treatments will emerge that might need less treatment.   Also people write about changing drugs but no-one has mentioned how long such surgery might be effective for and what happens then.  Good luck to all.

User
Posted 31 Jul 2023 at 13:44

Thank you Andy.  I am fortunate, it seems, to have an excellent consultant oncologist who keeps in regular touch with me.  So I will ask him whether he thinks there are any curative options, although I doubt it.  I might also ask him whether a 'holiday' from injections would be an idea.  Having said that, I am reluctant to disturb what is currently working so well `nd keeping my PSA undetectable!


 


I think there may be some crossed wires with another contributor with regard to changing hormone therapy injections:  I have been having six monthly Decapeptyl injections since diagnosis with no ill effects, and no wish to change.  Occasionally, with my oncologist's agreement, if I am overseas when my next injection is scheduled I have topped up with a 28 days Zoladex to keep me going - Decapeptyl is not available.  Again, with no discernible side effects. Incidentally I check my testosterone levels fairly regularly.  

User
Posted 31 Jul 2023 at 14:17

Nevis, do you do your owns testosterone tests or through your GP?

User
Posted 31 Jul 2023 at 15:08
Hi Decho

No, I paid for them privately. I was overseas at the time and because I had to change from Decapeptyl to Zoladex temporarily my oncologist suggested that I check my testosterone before and after the change to ensure I was still protected. I was! Then I went back on Decapeptyl once I returned.

One thing I did need to question at my GP Practice was their definition of "Six Months". They said "Six months" is half a year so half of 52, which is 26 weeks but the Decapeptyl leaflet defines 6 months as 24 weeks - on the basis that there are 4 weeks in a month (of 28 days). Given that the Decapeptyl leaflet is clear about this and also warns users that the timings are important, I insist on a strict 24 weeks between injections. My GP practice nurse reluctantly agreed although "Her computer says it is 26 weeks"!!! I told her I had a mathematics degree and both can be correct but not in this case!!
User
Posted 31 Jul 2023 at 17:20

All the hormone therapy injections are measured in weeks, 4, 12, or 24 weeks, except for Prostap which is measured in months (1 or 3 months).

User
Posted 31 Jul 2023 at 17:52

Yes, of course, but as I said, my GP practice’s computer gave the nurse a 26 week interval since the Decapeptyl packet says ‘6 months’!! I know it is 24 weeks but she doubted me until I showed her the Decapeptyl leaflet.  
The issue is that a ‘month’ is not absolutely defined in UK medical practice or so it seems.  My GP practice assumed that,  “If a year is 12 months then six months is half a year . If there are 52 weeks in year then there are 26 weeks in six months”!!  However my Denosumab osteoporosis injection is every six months and the company says that means every 26 weeks! Hey Ho!!


 

User
Posted 09 Aug 2023 at 12:35
Thought I'd add my 2p worth to this thread. I recently had a subcapsular Orchidectomy as I didn't want to have the 3 monthly injections, and the decision was easier for me due to the fact a previous bladder neck incision surgery had already interfered with any sexual activity.

The operation itself was very straight forward, and I woke up to find some lovely new pants in place that helped keep everything tightly packed to avoid bashes and bumps to that area. Surprisingly little or even no pain in the immediate area if all was left alone, but obviously difficult to not accidentally get the odd bash from your own leg if not careful. A background ache was only present around the top/sides of the groin area.

Two weeks later and I didn't need any special pants anymore, things were allowed to be as free as before. Because it was subcapsular you still get to keep your balls (albeit empty ones), but eventually they shrink down to hardly anything anyway. I still get my hot flushes but it does seem less frequent than the implant side effects.

My main concern at this point is because I was so inactive during my 5 months of Chemo my muscles in my legs feel really weak when I get out of a chair etc and without testosterone I'm not sure how I can build that back up again, but I have RT starting in a few weeks and with that comes an exercise program to try and get me on the right path.

For the record I'm 51 and started with 990 PSA which is down to 0.65 currently.
User
Posted 09 Aug 2023 at 12:47

Very interesting post Amarokada. I didn’t realise about subcapsular. Also interesting to hear about the hot flushes being reduced. I would describe hot flushes as a nuisance but I can live with them. More concerning is the stiffness and aches cause by Prostap 3…..or is it caused by the lack of testosterone? I have no idea. I’ve been doing lots of exercise, gym, cycling, walking and swimming..but it doesn’t seem to have made much difference. Certainly if I had to be on long term HT I would consider this rather than the 3 monthly injections. I guess the risk is though that a new treatment will come along which will make things easier….and of course you can’t have an orchidectomy holiday as you can with HT.

User
Posted 09 Aug 2023 at 13:38

Testicles are not always completey removed when done just to suppress Testosterone, but they can be and you can have prosthetic ones inserted.


Testicles shrink in the absence of Testosterone, whatever method is used to remove the Testosterone.

Edited by member 09 Aug 2023 at 13:40  | Reason: Not specified

User
Posted 09 Aug 2023 at 14:20

Thanks for this Amarokada!  And for your observations, Decho!  Interesting and relevant for me.  As I explained previously, I had a RP six years ago and that was followed by chemo and Decapeptyl injections.  As a result of all that, especially six years of hormone therapy, my penis and scrotum/testicles have atrophied significantly.  Not sure, therefore, whether it would make any difference if my orchidectomy was sub capsular or not. Decho's sensible concern that an orchidectomy is not reversible doesn't really affect me since (a) I am on hormone therapy for life and (b) I am going on 78!!  I have emailed my oncologist asking his advice but he is having a well earned family holiday.  However, he will be back next week.

User
Posted 09 Aug 2023 at 20:01

Thanks Andy! Not sure the prosthetic testes will fit these days!!


Alan

 
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