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Treatment of by Castration?

User
Posted 20 Feb 2022 at 13:06

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 15:12
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 15:57

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 16:03

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 19:13
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 14:06

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 15:26

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 15:59  | Reason: Not specified

User
Posted 21 Feb 2022 at 15:38

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 09:47

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 09:52

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 14:05

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 14:45
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 12:09

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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