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User
Posted 11 May 2025 at 05:05

I have a Degarelix injection every 4 weeks, one time on the left side and the  next injection on the right side, very pain full, just wondering has anyone had this surgery done, having a read up on things, getting both testicles removed, stops the testosterone, so will not need the hormone injection, will still need to take the other hormone treatment apalutamide tablet 240mg each day.

User
Posted 12 May 2025 at 10:18

Yes, I went for bilateral subcapsular orchidectomy.  Why?  I wasn't getting on with prostap injections as they gave me muscle aches and pains, plus I was told I'd be on them for life! With that in mind, why on earth wouldn't you get rid of the main source of testosterone? No more injections, no more fluctuations in testosterone levels through the 3 months and no more juggling doctor appointments with other life.  The operation was a quick day job, I was sore for a week, but then back to work.

Yes I still have to take my apalutamide pills daily, but that's it. Have done so now for over two years. Ongoing side effects - very regular hot flushes, tiredness, loss of body hair, zero libedo but I'm still alive and kicking.

 

Basically, if you've got advanced prostate cancer and have been told you'll be on hormone therapy for life, orchidectomy is a no brainer. If you've a hope of cure and sex is still a vital part of your relationship perhaps not.

Edited by member 12 May 2025 at 10:20  | Reason: Spelling

User
Posted 11 May 2025 at 12:23

Often when I hear people thinking of bilateral orchiectomy (testicle removal), it's because they think it will stop the hot flushes and/or other hormone therapy side effects, which it doesn't, but that's not your reason for thinking of it. A few people here have done it so hopefully you'll get a reply from them too.

Degarelix is a GnRH Antagonist. It was the only one, but there is now a daily tablet GnRH Antagonist, Relugolix/Orgovyx, which you could ask about instead, but I'm not aware of any advantages one way or the other compared with bilateral orchiectomy.

I have heard that a couple of things can help with reducing the injection site reaction of Firmagon. One is to use an antihistamine, and the other from an oncologist that the reaction is due to spilling some of the injection on the skin surface. I can't personally vouch for either of those.

[Disclosure: I am a patient consultant for Accord, who supply Orgovyx in Europe.]

User
Posted 11 May 2025 at 12:24

There's been several people here consider the idea but I don't know if anyone went ahead with it and if so, how it worked out for them.

On the plus side, if you're having trouble with the injections or their side effects, this could be a good option. I think I'd give it serious thought if I got to the stage of being on hormone therapy for life.

If you're on HT for life you'll have to deal with some of the side effects of never having testosterone in your system. Cholesterol can go up, blood pressure can go up, bone density can fall [osteopoenia up to osteoporosis is progressive] and muscle loss, while it's not life threatening, does mess with QoL.

I suspect, based on my own experience coming off Zoladex, that having your testes removed or surgically blocked, might be more tolerable than HT because of some of the side effects these drugs have, like poor sleep, restless leg syndrome and generally feeling bad. I say that because in the period after my HT finished but before my testosterone came back, life was significantly better hence, these drugs definitely have side effects outside their intended goals.

Are you on HT for life?

Jules

 

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User
Posted 11 May 2025 at 12:23

Often when I hear people thinking of bilateral orchiectomy (testicle removal), it's because they think it will stop the hot flushes and/or other hormone therapy side effects, which it doesn't, but that's not your reason for thinking of it. A few people here have done it so hopefully you'll get a reply from them too.

Degarelix is a GnRH Antagonist. It was the only one, but there is now a daily tablet GnRH Antagonist, Relugolix/Orgovyx, which you could ask about instead, but I'm not aware of any advantages one way or the other compared with bilateral orchiectomy.

I have heard that a couple of things can help with reducing the injection site reaction of Firmagon. One is to use an antihistamine, and the other from an oncologist that the reaction is due to spilling some of the injection on the skin surface. I can't personally vouch for either of those.

[Disclosure: I am a patient consultant for Accord, who supply Orgovyx in Europe.]

User
Posted 11 May 2025 at 12:24

There's been several people here consider the idea but I don't know if anyone went ahead with it and if so, how it worked out for them.

On the plus side, if you're having trouble with the injections or their side effects, this could be a good option. I think I'd give it serious thought if I got to the stage of being on hormone therapy for life.

If you're on HT for life you'll have to deal with some of the side effects of never having testosterone in your system. Cholesterol can go up, blood pressure can go up, bone density can fall [osteopoenia up to osteoporosis is progressive] and muscle loss, while it's not life threatening, does mess with QoL.

I suspect, based on my own experience coming off Zoladex, that having your testes removed or surgically blocked, might be more tolerable than HT because of some of the side effects these drugs have, like poor sleep, restless leg syndrome and generally feeling bad. I say that because in the period after my HT finished but before my testosterone came back, life was significantly better hence, these drugs definitely have side effects outside their intended goals.

Are you on HT for life?

Jules

 

User
Posted 11 May 2025 at 14:27

A member of this forum did have this now relatively rare procedure as a treatment to reduce Testosterone but I can't recall it being updated for a long time. Some men don't continue to update and the forum search facility is pretty poor. Though American, you might find this link provides some interesting information on the procedure https://my.clevelandclinic.org/health/procedures/orchiectomy

 

Edited by member 11 May 2025 at 14:27  | Reason: to highlight link

Barry
User
Posted 11 May 2025 at 16:08

I would consider switching to zoladex, which is every three months. I have not seen many complaints on this forum  about the injection site with zoladex, whereas I have seen several for degeralix.

Edited by member 11 May 2025 at 19:56  | Reason: Not specified

Dave

User
Posted 11 May 2025 at 19:07

Hi all, regarding my post, Testicles Removed, I am on hormone therapy for life, I do get the hot flushes, but can deal with them, I take Evening Primrose oil 1500mg which was recommended for help with the hot flushes, its the Degarelix injections that bothers me, I feel that after the injection I am in pain for 3 or 4 days, I take some painkillers to help plus a icepack to help with the swelling, but I feel that I no sooner get over the injection, then its due again, regarding the testicles removed, after being on hormone therapy for the last three years, my bits and bobs have shrunk  to next to nothing, penis very small and testicles about the size of two M&Ms ( The Sweets ), so for me I have nothing to Lose, sex life is finished I don't have the equipment, and at 72 years old, I don't think I will be having anymore children, from what I have read by getting the surgery to remove my testicles, my body will not produce any Testosterone,  only a small amount from the Pituitary gland, just testing the water to see if anyone has had this surgery, and how did it go?

Edited by member 12 May 2025 at 19:02  | Reason: Not specified

User
Posted 11 May 2025 at 21:02

Originally Posted by: Online Community Member
from what I have read by getting the surgery to remove my testicles, my body will not produce any Testosterone, only a small amount from the Pituitary gland

Adrenal glands rather than pituitary.

There are a couple of orchiectomy patients in this thread:
https://community.prostatecanceruk.org/posts/t28941-Post-Orchiectomy-treatment-options

User
Posted 12 May 2025 at 10:18

Yes, I went for bilateral subcapsular orchidectomy.  Why?  I wasn't getting on with prostap injections as they gave me muscle aches and pains, plus I was told I'd be on them for life! With that in mind, why on earth wouldn't you get rid of the main source of testosterone? No more injections, no more fluctuations in testosterone levels through the 3 months and no more juggling doctor appointments with other life.  The operation was a quick day job, I was sore for a week, but then back to work.

Yes I still have to take my apalutamide pills daily, but that's it. Have done so now for over two years. Ongoing side effects - very regular hot flushes, tiredness, loss of body hair, zero libedo but I'm still alive and kicking.

 

Basically, if you've got advanced prostate cancer and have been told you'll be on hormone therapy for life, orchidectomy is a no brainer. If you've a hope of cure and sex is still a vital part of your relationship perhaps not.

Edited by member 12 May 2025 at 10:20  | Reason: Spelling

User
Posted 12 May 2025 at 16:52

Hi John , Thanks for your reply to my post regarding testicles removal, it was  a good read, I have a upcoming appointment, on Wednesday 14th May 2025 with Urology at James Cook Hospital, i was hoping someone on the forum might have had the surgery to remove the testicles, and I have had a few good reply's, all very good, I now have some information when I go for my appointment, thank you.

 
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