Testosterone level high / rising?

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Hi all,

I had a telephone chat with my consultant earlier as a follow up to a recent review and then 'additional' blood test (to check the results of the one a couple of weeks earlier).

After 4 months of HT my PSA is still falling (now 1.6 from 6.x I think) but my testosterone is not only not where they expected it to be (unmeasurable), it's gone up from 9 to 18 over the couple of weeks between the blood tests? I was also put back on Bicalutamide over those two weeks between blood tests and I think that's supposed to counter a testosterone 'flare up'?

As a potential aside (?), my Gp has referred me to the Breast Surgery Dept for a slightly uncomfortable 'lump' he found in my left pec?

My first bone and organ CT scans showed clear of any metastization but that was quite a while ago now. I'm still waiting for the results of a follow-up CT scan for the small node they found on my lung.

Anyone had any experience of testosterone levels and can add anything re what might be going on please?

It seems to have confused my consultant and she said she is going to refer my case to endocrinology?

  • It depends on which type of hormone therapy you are on as they act in different ways. The injections stop the production of testosterone (the cause). Things like Bicalutamide, Enzalutamide actively block the binding sites so that the cancer cells cannot multiply (the effect). The Bicalutamide is supposed to reduce some of the side effects by reducing the flare but I have not looked into what the level of flare would be if ADT was given without the initial Bicalutamide. Things like Darolutamide work in a different way again.

    I don't think it is usual to test for testosterone so frequently but the oncologist should be aware of the effects of the drugs they prescribe. We are not medical experts but I would be more concerned about having a testosterone test after the next injection to check more quickly that it is working. 

  • I have attached a link which explains the action of different treatment types than I can.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8977476/

  • Thanks very much for your time AH. It is appreciated. ;-)

    I started off with two weeks of 50mg Bicalutamide (early Oct 23), then the one month Decapeptyl (SR injection, 3mg, in buttock) whilst finished the other two weeks of Bicalutamide. I then had 2 x Prostap 3 DCS (11.25mg, that was originally suggested as an 'OR' v Decapeptyl) in my right then left stomach area at 3 month intervals.

    From memory my first blood test (on my request because of a mild background headache) revealed a PSA of 4.92 (Mid April, 2023). It was then up at 6.2 on the pre-med for the RALP mid  Nov 23. I then started the above HT and I had another BT mid Feb 24 and the PSA was 2.6 and another BT two weeks later (before second 3m HT injection) with PSA 1.6 after being on Bicalutamide again for those two weeks.

    I've taken my last Bicalutamide tablet today and still am not sure if I have noticed any side affects to any of it at all? My mood seems reasonably stable, not had any hot flushes (even when visiting Mum in her very hot care home for 8 hours) and still have the same appetite, energy and (poor) sleep pattern.

  • So, for the prostap injection you are looking at castration levels in 4 to 6 weeks after having it. A blood test then might give a better indication if something is happening. Did you actually watch how the last injection was given compared to the previous one as the way it is done is important.

  • Agreed - The Decapeptyl injections have very specific instructions about how they are to be mixed (I think it's shaken not stirred!!) before injection into the buttocks - as once there they form a gel which lasts for the period of the injection - in my case 6 months.

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  • So, for the prostap injection you are looking at castration levels in 4 to 6 weeks after having it.

    So maybe that's what the consultant was working on Ah?

    Did you actually watch how the last injection was given compared to the previous one as the way it is done is important.

    No, not really as I've only just become more 'at ease' around needles and one way of dealing with that is looking elsewhere. I think the nurse who applied this last one is the same as the one who did the first and different to the one who did the second.

    Both seemed confident in what they were doing, mixing the syringe / whatever (as I said, I tried not to look). ;-(

  • The Decapeptyl you initially had has the same 4 to 6 weeks to castration as the Prostap. Theoretically the first Prostap injection should have completed the work. If it failed due to misadministration (the main reason for failure) then the testosterone would rise again. Add in the Bicalutamide and I think this is what you have seen with the bounce. This is pure conjecture but a possible explanation?

    Also you have had RALP so your PSA would drop, hopefully to undetectable levels within a couple of months. Do you know if they managed to remove all the cancer with good margins?

  • If it failed due to misadministration (the main reason for failure)

    OK, so, how 'difficult' is it to get that wrong or how different is it to any other injection in that area for other things (like blood thinners  etc) so you know please?

    Also you have had RALP

    Sorry, no, I was due to have RALP but bottled it the day before but got onto the RT pathway soon after.

  • Thanks for the clarification about the RALP Able. The PSA will not be expected to be undetectable with just hormone therapy.

    Bicalutamide is known to cause changes in the breast tissue.

    It is not common for the injections to be misadministered but there were sufficient incidents that a supplementary directive had to be sent out by the manufacturers giving detailed instructions on how to mix it, which way up to hold the syringe, and where to inject it, e.g. if in the stomach you should hold a pinch of fat (at least 2 inches away from the belly button) then push the needle in to the sub cutaneous area at a 30 to 45 degree angle, depress the plunger fully and ensure that you hear a click as you pull it out. Remove the syringe, then release the abdominal pinch. It is also important to administer the injection straight after mixing as it can soon demix. 

    Things like blood thinners are given at a 90 degree angle as the needles are a lot smaller. I have to give my husband an injection for his bones which comes in a vial. I usually extract the liquid with a large needle and then change it to a finer one before administration.

  • Bicalutamide is known to cause changes in the breast tissue.

    Hmm, so by 'changes' do we include cysts or cancer Ah?

    hold a pinch of fat (at least 2 inches away from the belly button) then push the needle in to the sub cutaneous area at a 30 to 45 degree angle, depress the plunger fully and ensure that you hear a click as you pull it out.

    Unfortunately I didn't watch the nurse doing it Ah. What is a shame is when I was due the first 3 monthly HT and the Dr.s had mucked up the Prostap prescription (meaning I got a black mark for not attending the appointment to have it administered because they hadn't signed off the prescription! (since cleared)) I had it with me at the hospital (PC support group meeting) where my CNS's lurk  and even found one and asked if she could inject it for me (like how long would it take?) but she refereed me back to the Dr.s and another few days late.

    They then prescribed my next Prostap injection one month early?