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Dieting with nil testosterone

User
Posted 31 Dec 2020 at 12:21

Hi All,

I was diagnosed November 2017 after completing the ride to Amsterdam (took advice from other riders).

After 18 months of implants, about 20 months of Bicalutamide and 38 Radiotherapy sessions, I am now recovering. I have worked all the way through it so my body is pretty strong.

However, after my last blood test ( 1 year ) I still have no hormones present in my body.

My question is: how does having no hormones affect my ability to lose weight?

 

 

User
Posted 31 Dec 2020 at 14:43

No testosterone will tend to cause you to build up body fat around the abdomen/waist and breasts first (female form), but eventually everywhere including visceral fat, and it makes it difficult to retain muscle. If you have body fat in these areas, then lack of testosterone may hinder you losing that.

It can take up to 15 months to start getting testosterone back, so I think it could still happen for you. In a small number of cases, it doesn't return, and then you might want to have a conversation about having further andrology tests and testosterone replacement therapy, but if you start that too soon, it may stop it returning when it would have done otherwise. Do you know what your testosterone level is?

You should also keep an eye on things like blood pressure, blood glucose, cholesterol, all of which can be pushed up by lack of testosterone, and making provision to protect yourself against osteoporosis. In effect, you are still on hormone therapy. Keep up with the exercise - that's excellent.

Edited by member 31 Dec 2020 at 14:44  | Reason: Not specified

User
Posted 31 Dec 2020 at 15:38
Thanks Andy
User
Posted 31 Dec 2020 at 15:39
Sorry Andy

At my last test it was undetectable

D

User
Posted 31 Dec 2020 at 16:37
D, was it your PSA that was undetectable or your testosterone? Testosterone check doesn't usually come back as 'undetectable'.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Dec 2020 at 17:03

Hi Lyn

I believe that was their term. They said that at 0.4 that couldn’t honestly say it was a true reading.

however, they did mention that after being on Bicalutamide for over 18 months the chances of my hormones returning was less than 5%

D

User
Posted 31 Dec 2020 at 18:48

It's the implants (Zoladex?) which get rid of your testosterone, but your chances of getting testosterone back after 18 months are very much higher than 5%. (You chance of not getting it back might be nearer 5% - I don't know what that figure is off the top of my head, but I might be able to find it if I searched around.)

Bicalutamide doesn't stop testosterone (actually, by itself, it pushes testosterone up by about 50%, but not if you're having implants too).

0.2-0.7 nmol/L are typical values on GnRH Agonists (such as Zoladex), although anything below 1.2 is regarded as castrate level. These levels are correctly measured, but yes, they basically mean you haven't got any testosterone - you're still under the influence of the hormone therapy. Normal range is around 7-26 nmol/L.

You could ask if you can be referred to Andrology - it would probably take 3 months to happen anyway. They would probably measure GnRH and Lutenising Hormone levels which are the precursor hormones for making testosterone, to find at what point testosterone production is being blocked, and they might have some things they can try to kick off testosterone (I'm not sure). Failing that, they might start the conversation about testosterone replacement therapy (which will open up another can of worms for a prostate cancer patient).

 

Edited by member 31 Dec 2020 at 18:56  | Reason: Not specified

User
Posted 01 Jan 2021 at 09:00

David,

Going back to your original point, how do you diet when on hormone therapy (or in your case, still under the influence of hormone therapy)?

This is a good question which I've never seen answered. I've been to several presentations on diet for prostate cancer patients, and they all had one thing in common, no adaptation to the effects of hormone therapy, beyond saying you need a regular good diet. For me at least, this isn't true.

I also exercise quite a bit, and I could lose weight. However, body composition scales showed when I did this, I was simply losing muscle faster than I was putting on fat, i.e. my body was in effect burning my muscle but still gaining fat, which is definitely not what I wanted. What I've had to do is increase my protein consumption well above what you'll see in the classic good diet. For me, this is mainly chicken (turkey over the last week!) and fish, as I'm not much of a red meat eater.

With exercise and reasonably high protein consumption, I've managed not to lose any more muscle for some time. I have put on fat, but at a rate I considered sustainable for time-limited hormone therapy, although not if I need to return to it lifelong in the future. I'm a year behind you, my last implant having just run out.

If you are looking to modify your diet and see what effect it has, I would recommend using body composition scales. They quickly showed up for me that some weight loss I might otherwise have been pleased with was actually a bad thing, as it was muscle loss with fat gain.

User
Posted 01 Jan 2021 at 09:31

Yes Andy, that was the term (castrate) that was used in the report.

we have already discussed HRT but there’s a 60% chance that it may kick off the cancer again. They said if that were to happen it would be a lot more aggressive.

looks like I’m stuck with it for now.

Happy New Year to you all.

Keep your pecker Up. Or not, as the case may be🤣🤣🤣🤣

User
Posted 01 Jan 2021 at 11:01

Originally Posted by: Online Community Member
we have already discussed HRT but there’s a 60% chance that it may kick off the cancer again. They said if that were to happen it would be a lot more aggressive.

This sounds dubious on both counts to me.

So is he saying there's a 60% chance your cancer would come back more aggressively if your testosterone had returned? Those are not the usual odds for external beam radiotherapy. Or is he saying this is more likely to happen with TRT than if it was your own testosterone?

So you are in effect being kept on hormone therapy. Why don't we do this to everyone if it would significantly reduce the chance of cancer coming back? The answer is that lack of testosterone causes issues too. Firstly, there are the quality of life issues from the side effects - they're personal and impact some people more than others. Secondly, there are longevity issues - lack of testosterone causes other health issues which increase chance of cardiovascular events, broken bones, increased risk of dementia, etc. The selection of hormone therapy duration for curative treatments is significantly driven by balancing the benefits from the prostate cancer side of things against the disadvantages of having no testosterone.

When I'm doing presentations on hormone therapy, the question I get asked most often by any clinicians in the audience is what is my view on TRT after prostate cancer treatment, so I have quite a detailed answer ready for this, and it's something I have thought about and discussed with a couple of England's top urologists. (BTW, I'm a patient, not a clinician.) I recently posted more detail on this in another thread here.

 

User
Posted 01 Jan 2021 at 12:11
It seems that some of the stuff you have been told is unusual to say the least so it would be helpful to know more about your diagnosis and who is telling you this stuff.

For example, it is not true that testosterone can make the cancer come back more aggressively... if that was true then all men would need to be kept on HT for the rest of their lives following 'curative' RT. However, there is a lot we don't know about your situation and it may be that yours is not a common curative case:-

- were you diagnosed with a common adenocarcinoma or a rare type?

- do you know why you had HT injections and prolonged bicalutimide? This is not usual with curative RT?

- are you instead on intermittent HT for incurable cancer?

- is it your oncologist or specualist nurse who is telling you this information or your local GP? Or someone else entirely?

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

User
Posted 01 Jan 2021 at 14:39

Hi Folks,

My RT was not restricted to my prostate, it also targeted my lymph nodes.

im unsure of what types of cancer you refer too so I cannot really enlighten you on what mine was.

The Oncologist would not comment on TRT at all. My next stop was the Endocrinologist, after speaking to my GP, he to would not commit himself to advise me one way or the other.

All that was said to me was; if I went the TRT route it could result in the cancer returning quicker. I asked what the chances were and they said that there 60-40% chance. I did not think at the time it was a risk worth taking.

Obviously, I cannot say whether their diagnoses, was dubious or otherwise.

I can only take advice that is given to me by the professionals, it would be a thankless task to get advice on the advice.

The reasons for the injections and long term bicalutamide I believe was the result of my high PSA levels (56).

User
Posted 01 Jan 2021 at 15:32
Okay, that makes more sense - as you say, if the GP has already consulted with the endocrinologist then testosterone replacement is not an option.

There is still a part of your story missing and that perhaps was never discussed with you. It is very rare for a man to have the injections AND the bicalutimide at the same time over a sustained period; the PSA level wouldn't expalin why they decided to do that. Most men would only have 28 days of bicalutimide at the beginning. There are at least 27 different types of prostate cancer - some are more aggressive than others and some do not respond to the hormone treatment in the normal way so perhaps you fell into one of those groups. Whatever the back story is, it doesn't sound like it was explained to you in great detail so you may never really know now unless you ask the oncologist the next time you see him/her.

Back to your original question, it is not too late for the testosterone to kickstart by itself; in the meantime, being below castrate level means that it is harder for you to build & maintain muscle. But like all weight loss strategies, you have to eat healthily & reduce calorie intake as well as exercising.

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

User
Posted 13 Apr 2021 at 22:39
What Lyn said about bicalutimide stopping before injection mirrors my own experience. What caught my eye was her remark about the 27 types of PCa. Please could we have a reference for further reading?

I know she is not a lurking medic, but she does know a lot about our malady. As a newbie with habits of study I am trying to learn more and would be grateful for some guidance. I found a pre-registration reading list from Kings College Cambridge medical school and am currently enjoying Alberts Essentials of Cell Biology, but it doesnt reach cancer until page 717.

User
Posted 13 Apr 2021 at 23:32

Reading is sustenance for the mind but sometimes best not to be done at bedtime.

A light introduction best accompanied by coffee and toast:-
https://prostatecanceruk.org/prostate-information/further-help/rare-prostate-cancer   

This one is old but fascinating - includes 8 sub-categories of adenocarcinoma:-
https://www.nature.com/articles/3800052  

What I find most interesting is the prostate cancers that produce no PSA and the ones that do not respond to HT ... obviously, these are the most devastating (but fortunately very rare). And for personal reasons, I am particularly interested in why some prostate cancer stops producing PSA as it becomes more aggressive; if we understood that, my father in law might still be here.

Edited by member 14 Apr 2021 at 00:32  | Reason: to activate hyperlinks

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

User
Posted 20 May 2021 at 21:30

Thanks for those,  Lynn.

A family emergency took my attention for some weeks, and I have just got around to reading your references. They brought home to me the awesome erudition of our wonderful oncologists; but I think I shall go back to reading about my plain old adenocarcinoma - if not with relief, at least with a sense of facing a relatively familiar enemy. 

 
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