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Treatment of by Castration?

User
Posted 15 Feb 2022 at 18:07

As someone new to this community I am seeking advice or experience of castration as opposed to periodic injections of testosterone inhibitors, the latter being the suggested treatment by my Consultant when I come off the 'Watch & Wait' programme; likely following my 3 monthly PSA blood test next month.

I suggested this alternative treatment as although otherwise very active and fit for my age (88 in April) I'm a widower with no close relationships other than my offspring, so see this is an apparently more effective treatment. My Consultant readily agreed to carry out the necessary, more refined operation of partial castration that has the required effect. I can find little information on this option. I can however, well understand that it will likely apply only to those in a similar position to myself.

Waysend

User
Posted 15 Feb 2022 at 19:01
Hi Waysend,

we had a member Alex who went for surgical castration rather than chemical and did well for a number of years. We have also had a couple of family members whose men had castration, in one case because of other medications and in the other, because of existing mental health issues. Surgical castration is still used overseas as well, particularly in countries where you have to pay for treatment and hormone therapy is too expensive for many.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Feb 2022 at 12:06

The paper is interesting, but missing some things I would want to know.

It doesn't say what testosterone levels were achieved in the two cases. Castrate level is usually quoted as 1.2nmol/l which is what I was presuming castration normally achieved (but I don't know if that's the case). GnRH usually does better testosterone suppression than this at around 0.2-0.7nmol/l in cases I know, but as stated in the paper, there are a few percent of cases where GnRH doesn't get down to castrate level or microsurges above just before next injection. The paper suggests without showing any evidence that castration achieves a better testosterone suppression which is different to my assumption above, but the paper then points out that the side effect evidence doesn't match a better testosterone suppression.

If there is a difference in testosterone levels between the two methods, then an important discussion is a comparison of the length of time to become hormone resistant at those different levels, which isn't there. What would concern me is if fewer potential side effects resulted from slightly higher testosterone levels which resulted in shorter time to hormone resistance. You might still choose to go that route, but it would be good to have that knowledge up-front when making the choice.

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User
Posted 15 Feb 2022 at 19:01
Hi Waysend,

we had a member Alex who went for surgical castration rather than chemical and did well for a number of years. We have also had a couple of family members whose men had castration, in one case because of other medications and in the other, because of existing mental health issues. Surgical castration is still used overseas as well, particularly in countries where you have to pay for treatment and hormone therapy is too expensive for many.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Feb 2022 at 21:03

Interesting paper on this. It suggests Orchiectomy has several advantages over chemical castration but means Intermittent HT holidays can't be taken with Orchiectomy. https://prostatecancerinfolink.net/2015/12/30/surgical-orchiectomy-vs-medical-castration-in-treatment-of-metastatic-prostate-cancer/

 

Edited by member 15 Feb 2022 at 21:03  | Reason: to highlight link

Barry
User
Posted 16 Feb 2022 at 00:15

I didn't have much of a problem with my two years of HT, but I'm glad to have my mojo back.

Castration is irreversible, the injections can be stopped. I would consider the injections first and then make a decision about castration after six months.

Dave

User
Posted 16 Feb 2022 at 03:44

Hi,

I have recently been advised that I need to go back on HT for life. PSA now 3.6 following prostatectomy in 2017. Follow up RT and 22mth HT in 2018. Awaiting results of CT and Bone scans currently. I asked about the option of surgical castration instead of medical. My  Oncologist discussed with senior and they were OK with that option and have referred me to urology team.

I am (only) 64, married and sexually active but think it would be the best treatment choice for me based on my earlier HT experience and what Info I have found.

It is one treatment option that doesn't have a lot of documented personal experience on this site. So if nothing else I might be able to add a personal perspective for reference by others.

Will keep you posted.

Regards

J

User
Posted 16 Feb 2022 at 04:18

Originally Posted by: Online Community Member
I am (only) 64, married and sexually active but think it would be the best treatment choice for me based on my earlier HT experience and what Info I have found.

Have you any information to suggest that castration would be more tolerable than HT was? I've found that HT is difficult in several ways. Physically and mentally it's felt a little like I've aged 10 years in an instant, which is tolerable because it should be largely reversible when the treatment finishes but if castration causes the same changes and is irreversible, it might not be a great option.

Jules

 

 

User
Posted 16 Feb 2022 at 11:43

The side effects of hormone therapy are not directly due to the drugs, but due to loss of Testosterone, so I really doubt they'll be much different with castration. I have talked with a few guys considering castration to avoid the side effects, but I think that's incorrect logic. As pointed out, castration doesn't give you the option of intermittent hormone therapy either, or possibly other treatments not yet developed.

User
Posted 16 Feb 2022 at 18:11

Many thanks to the responders to my query. I am so new to this that I don't know if there is a way of directly messaging someones comment or indeed, request - any help/info on this would be appreciated.

As an aside the general suggestion points out the limitation of subsequent treatment choice. I can well understand the concerns of those younger and also the sexually active. They don't come into my decision process. For my generation I'm on borrowed time age wise. I have level 9 cancer aggression, 10 being the highest. I take daily prednisolone medication to reduce my immunity over reaction problem. Question: why such slow PSA progression? I put this to my Consultant stating that the hormone in the pred. med. was delaying progress and he agreed it likely. My same thought process was to eliminate the source rather than the interference practice, so partial castration and again he agreed. I had read the article shown on Barry's response, but that has been all the  info. I have found, hence my initial posting

User
Posted 16 Feb 2022 at 23:10

At this point it might be helpful if you gave us some more information on your PCa. I'm not sure what you mean about slow progress with your PSA score. You don't appear to be on a testosterone inhibitor, so are you talking about it going up or down?

For comparison, I'm 74, have a Gleason score of 9 and have had radiotherapy followed by HT [Zoladex]. Like you, I don't rate sexual performance as vital. What I've found with Zoladex is that while it does a great job of keeping my psa down post RT, it does have some undesirable side effects, both physical and mental, that I could well do without. If indeed castration would have the same effect it would not be a great deal of fun.

As others have suggested above, it might be worth trying out the injections first before you make your decision.

Responses to treatment vary between people so you might find a drug like Zoladex to be quite acceptable long term. Another factor here could be your current testosterone level. At 87 it might already be quite low so you might have less trouble adjusting to its disappearance than others who have a higher testosterone level.

 

Jules

 

 

User
Posted 17 Feb 2022 at 00:41
Waysend, you are correct - prednisolone can act as an anti-androgen and reduce some of your male hormone production. It is very unusual to be on active surveillance / watchful waiting with such a high Gleason score (you say you are a G9?) so I assume there is a good reason that your urologist decided not to start active treatment until your PSA reaches 50.

My instinct is that surgeons don't readily agree to remove someone's testicles so if your consultant has agreed that it is a reasonable way forward for you, go for it. Many men will react with horror because they can't imagine taking that decision themselves but data suggests that the side effects are slightly less than with hormone therapy and since the side effects of prednisolone can be significant, you perhaps don't want to add more breathlessness, etc to the mix?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Feb 2022 at 10:56

Thanks for responding. I was diagnosed with prostate cancer in August 2017 with a PSA marker of 11. Due to age/84 and low PSA and my wish of life quality not quantity I was put on their ‘watch & wait’ prog., initially with blood tests every 6 months then as the count steadily rose this changed to 3 monthly, specifically around the time when the laser op in February 2020 revealed the level of cancer aggressiveness. 

During the height of pandemic I was placed into the care of my local surgery with a request to transfer me back to my Consultant when score reached 30. This happened in late March at score 35. Scores for 2021: Jan 27  Mar 35 June 39  Oct 38(?)  Dec 45. The stated intention has been to start treatment of 3 monthly hormone injections at PSA level 50. In a recent telephone discussion with my consultant I suggested a surgical rather than chemical option. He readily agreed to do this and has confirmed this in writing to my local  doctor. I’m only committed unless adverse information emerges. Bear in mind that my prednisolone medication has resulted (it now appears) as my having some experience of chem. cast.

Take care,  Mike

 

User
Posted 18 Feb 2022 at 11:23

Hello to other responders. It seems I can only directly reply to 1responder directly, which I have just done, making a ‘round robin’ response necessary to others comments:-

LynEyre - Hi Lyn, bear in mind the high score mentioned only became evident 2.5 years after initial diagnosis and the on=going development has likely been affected by Covid lockdown. There have been intervening scans and tests in the 2017-20 period and was told to immediately report if bone pain was being experienced. In relation to that I have wondered if prednisolone would suppress early bone pain experience but hey, life goes on! Interestingly another responder also had his consultant’s agreement to the surgery option. My feeling is that there are normally no volunteers so the  medical  profession are anxious for outcome results and experience.

Take care, Mike

User
Posted 18 Feb 2022 at 11:50

Hi Jules, the only trial report I was able to find so far is fortunately displayed on Old Barry’s comments recently displayed. It is quite detailed and the bottom line is an overal better outcome but a higher incidence of deaths. Unfortunately there is no detail regards age/health of the comparison groups, but as I seek quality rather than life quantity that doesn’t relate to me. There have been other published reports of disquieted relating to why this isn’t a more wide spread option.

Take care,  Mike

User
Posted 18 Feb 2022 at 11:53

Hi Lyn, I’m still trying to get to grips with this system and only now have the reply pointer appeared against your posting. I therefore post a named reply to you instead. Kind regards,  Mike

User
Posted 18 Feb 2022 at 11:58

Hi Dave, thanks for your response. I can see from your displayed photo that your situation and needs differ considerably from mine so that needs to be borne in mind. Kind regards,  Mike

User
Posted 18 Feb 2022 at 17:29

Quote:
Waysend;264884

 My feeling is that there are normally no volunteers so the  medical  profession are anxious for outcome results and experience.

Take care, Mike

On the contrary; before HT was discovered, all men were surgically castrated and it is still a common treatment in some African and Asian countries so there is plenty of data regarding its efficacy 

If you want to show who you are replying to, you can click on the little speech marks next to their post. Or you can just start your response with the name of the person, as you have done here. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Feb 2022 at 09:01

Thanks for your response Lyn, but it does raise the question of why I was advised that my treatment would be injections rather than ‘these are your options’?.

Also, with the potentially huge numbers of men in the countries you indicate having initially the only option of surgery, are they now offered both treatments to choose from? Are there any resulting statistical data of the individual treatment outcomes in terms of side affefects during treatment and on-going survival?

You too take care, Kind regards,  Mike

 

User
Posted 19 Feb 2022 at 10:25
Because surgical castration is not routinely offered on the NHS now - for almost all men, hormone treatment is a better option because it can be stopped if the side effects are too bad.

Not sure I understand your second question? Men suitable for prostatectomy wouldn't have their testicles removed. But if they are diagnosed with advanced prostate cancer and can't afford the hormones, surgical castration is their only option.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Feb 2022 at 00:26

Originally Posted by: Online Community Member
It is quite detailed and the bottom line is an overal better outcome but a higher incidence of deaths.

 

Mike, I read through the study link given by Old Barry and so far as I can see castration appears to have several advantages ... reduced chance of fractures, lower risk of peripheral arterial disease and lower risk of cardiac related complications. I couldn't see anything a higher incidence of death. Are you talking about risk involved with the operation/general anaesthetic? The advantages are surprising, given you lose testosterone either way but there is a rather technical description of why that might be the case in this article:

https://jamanetwork.com/journals/jamaoncology/fullarticle/2476248

Looks like a good option!

Jules

Edited by member 20 Feb 2022 at 02:47  | Reason: Not specified

User
Posted 20 Feb 2022 at 11:36

Thanks Lyn, helpful as always.  Kind regards,  Mike

User
Posted 20 Feb 2022 at 12:06

The paper is interesting, but missing some things I would want to know.

It doesn't say what testosterone levels were achieved in the two cases. Castrate level is usually quoted as 1.2nmol/l which is what I was presuming castration normally achieved (but I don't know if that's the case). GnRH usually does better testosterone suppression than this at around 0.2-0.7nmol/l in cases I know, but as stated in the paper, there are a few percent of cases where GnRH doesn't get down to castrate level or microsurges above just before next injection. The paper suggests without showing any evidence that castration achieves a better testosterone suppression which is different to my assumption above, but the paper then points out that the side effect evidence doesn't match a better testosterone suppression.

If there is a difference in testosterone levels between the two methods, then an important discussion is a comparison of the length of time to become hormone resistant at those different levels, which isn't there. What would concern me is if fewer potential side effects resulted from slightly higher testosterone levels which resulted in shorter time to hormone resistance. You might still choose to go that route, but it would be good to have that knowledge up-front when making the choice.

User
Posted 20 Feb 2022 at 14:12
I wish I could find Alex's profile but it is nowhere to be seen - perhaps his family deleted it after he died. A shame as he lived for many years with advanced PCa just on the strength of his orchiectomy and main side effect for him was muscle wastage and fatigue. He came to the Leicester annual get-togethers - a lovely man
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Feb 2022 at 14:57

When treatment time and choice need to be decided it looks like I will need to have a very lengthy list of questions to first be answered. Many of these result from the helpful community postings for which I’m very grateful, so thanks to all.

Mike

User
Posted 20 Feb 2022 at 15:03

Lyn, your mention of annual Leicester meetings - is that confined to Leicester or are other locations available. I live in north west Surrey?

Mike

User
Posted 20 Feb 2022 at 18:13
The annual Leicester meet up used to bring us all together from around the country - it was brilliantly arranged by one of the long-standing members, George. Then a year or 2 before Covid hit, PCUK volunteered to take over the organising of it and we haven't met since for obvious reasons. Some members used to meet for an afternoon / evening every December next to Euston rail station - that was also arranged by one of the forum members.

There are a number of support groups spread around the country - if you google 'prostate cancer support group local' it should bring up a list. Many groups have been meeting on Zoom during the pandemic though. Andy (a member here) also runs or is involved in a support group in his area which has attracted men from all over the country for its virtual meetings.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Feb 2022 at 13:06

Hi Jules I found a report somewhere that showed similar positive results to those you have featured but did indicate the on-going survival term over an extended period was better for those that were in chemical group . It was expressed in percentages and if memory serves me right there was a 10% higher incidence of those in the surgical group in the period monitored.

As I've reported in a response earlier, Quality is the be-all for me so that is why, to date at least, surgery is seeming attractive.

Take care, Mike

User
Posted 21 Feb 2022 at 14:26

I was diagnosed in 2017 age 59 with stage 4 metastatic Gleason 9 PCa, and started Prostap jabs. 
Severe acute idiopathic pancreatitis in November 2018 - considered unlikely to be associated with the Prostap, but possible. A very nasty life threatening event which saw me opt for a bilateral subcapsular orchidectomy in February 2019. The Consultant Urologist said castration was all they used to do. They have plenty enough practice both back then, and with testicular cancer now. He said they’d not been asked for it for about twenty years for PCa, but commented that he thought they ought to do more of them. They don’t bother to offer the option as so very few would take it. 
I remember a retired GP on here a few years ago who was determined he wanted it. He didn’t like pharmaceuticals. Ironic. 

The very vast majority of the subcapsular tissue is the glandular testosterone making stuff. They may or may not even bother to leave to remaining bit that make sperm at the end; Rendered useless anyway.
At first the capsules are engorged with blood, and it’s like being billy big b*ll*s, however this subsides slowly - it takes months, maybe a year or so, and there’s not much left then to be honest.
It all carries on shrivelling away to nothing anyway just the same as the jabs.

One doctor told me that she thought orchidectomy has fewer side effects because all chemicals have other side effects that those intended, although of course the main “side effects” of the treatment are simply the effects of no testosterone.

Personally I don’t think it makes much difference really. Bear in mind, it’s not quite the minor procedure you may think it is, and it may take a few weeks to fully recover. It’s not hard core, but distinctly uncomfortable if you cross your legs wrong etc., for a while.

My PSA has been on the rise, and I’m quite poorly now really. I’ve had my maximum two high dose pelvic palliative radiotherapies, and am on Enzalutamide. Consultant Onco. says it’s a matter of symptom control now.

Fortunately the nasty symptoms are a bit better now than they were in November-December, and I don’t know, but  after that bout of real awfulness, I do wonder whether if, or when, the time comes when I want to throw the towel in, I’ll regret having had surgical castration…? 

All in all and in my opinion, I don’t think it makes much difference really which you choose. Either works, it’s the same treatment. It’s not wrong to have castration, it’s the most common form of treatment worldwide.

Edited by member 21 Feb 2022 at 14:59  | Reason: Not specified

User
Posted 21 Feb 2022 at 14:38

Hi,

There is a US forum I found that has quite a few personal stories of recent choice of orchiectomy in the Advanced Prostate Cancer section. https://healthunlocked.com

Regards

J

User
Posted 22 Feb 2022 at 08:47

This has been a depressive read Michael, I can see that you have had a very rough time and you have my sympathy. Your comment at the end is intriguing, “when the time comes to throw the towel in” etc. What difference at that stage would the choice you made affect the outcome?

Keep positive, Mike

User
Posted 22 Feb 2022 at 08:52

Thanks J, I did start to register but its a long process (or perhaps its just slow old me) but Ive run out of time  as I have a pressing engagement. Perhaps later.

Take care, Mike

User
Posted 26 Feb 2022 at 13:05

Hi again J,I’ve now been able to read the info on the link you provided and once beyond the reams of statistical jumbo-jumbo the summary is very specific in that surgical castration has some significant benefits over the chemical option. At the moment unless I discover, or perhaps advised by my Consultant, that this isn’t advisable I’ll go for surgery. Frankly I have no need to consider anything for this other than learning that the aftermath of surgery can result in very bad side effects in a significant percentage of such treatment. I would hope that the consultant, since agreeing to carry out the operation, having since learned this would be duty bound to tell me before treatment starts. I certainly now have a long list of questions to ask before treatment starts, this helped by all the responses by those on this Forum - many thanks to all.

User
Posted 26 Feb 2022 at 13:45
Also try the 'you are not alone now' website (YANAnow) which is Australian but attracts an international membership, is well established and was started by a member of our forum. You can search by treatment type which is a very useful function!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Feb 2022 at 11:09

Hi Waysend, glad you have been able to make a decision. Keep us informed how things go, even if you just post once a year being able to refer other people to your experience will help them.

Dave

 
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