Testosterone level still high?

Hello Again Able  Welcome back.

Able said:

Anyone care to share any thoughts on any of this please?

Well to be honest - my only thought on this one is an issue with your first Prostap injection as I would have thought both your testosterone and PSA levels would have been vastly reduced in the first 3 months. My initial thoughts would have been to ask the Consultant why no drop and is there a possibility you are "HT Resistant".

Let's hope someone has an answer for you as this is a new one on me and I am interested in the answer just as much as you are!!

Best wishes - Brian.

Hi Able,

Do you have any side effects like sweating, hot flushes, fatigue to establish if the HT is working? Also if you can put your full diagnosis on your profile so people here will be in better to position to help.

Best wishes

Dafna

Hi Able.

Occasionally there have been reports of implant failures due either to a mechanical issue with the syringe or to delivery problems. This has led to the guidelines being updated. By the sounds of it your oncologist suspects this as they have put you back on Bicalutamide to prevent testosterone flare with your next implant. Make sure that you get a testosterone test to confirm that the next one has worked. It is good news that your PSA has not gone up but I would have expected it to drop a lot lower with the Prostap injection. It might be an idea to check whether you are going to be given Prostap or a different ADT injection, or maybe ask for a monthly injection so that you can check earlier whether it is you or the drug.

Hi, side effects? No, not really? About the only thing that seems to have happened is a loss of libido (but not of ability etc) but some of that could be everything else that's going on (Mum having a stroke and us regularly spending lots of time with her (very hot) care home).

As of  April 2023:

Oncology summary: GS 4+4, stage T2N0M0, cores 4/17 MCL, 11mm, volume of the gland 48cc, PSA 4.92

RALP planning: Right side nerve spare, MUL 19mm, tiny median lobe, early T3a

Other imging summery: CT scan and bone scan no mets.

Thanks for the feedback etc.

The consultant suggested I get another blood test after visiting my PC support group at my local hospital at the beginning of next month?

My next HT injection is also due about the same time and yes, is Prostap again (I already have it here because the Dr's can't seem to get it's dispensing right. It was a week late the first time). ;-(

04 Dec 2023 Attended for the first Prostap3DCS 11.25mg injection.
Medication given (8B311) - Prostap 3DCS 11.25mg
Subcutaneous injection of gonadorelin analogue (XaamT)
Injection into body site (Xa3HE) - Lower right abdomen
Overview Notes (Y0028) - Patient informed re next injection due date.
Patient informed of next injection due date (Y1378) - 4/3/24
Batch number and expiry date (Y4615) - 517680 ~+ 1/26

Good idea re the monthly injection.

So, if the testosterone has gone down (12 to 10) AND the PSA has dropped from 6.x to 3.x, wouldn't that suggest that something has been working a bit?

Is there anything I should have avoided during the 4 months I've been under HT, like alcohol? (I might have one 440ml can of 2 or 3.8% lager 5 times a week with my dinner)?

Hi Able.

Good question. Here is my theory but I am no expert. When you initially take Bicalutamide it reduces the PSA. Once you stop taking Bicalutamide your PSA will start to rise again so what you are seeing is a return to near where you were pre treatment, but the longer you are off the Bicalutamide then the higher your PSA may go. Also when you start taking Bicalutamide the testosterone can increase for up to 12 weeks but when you stop taking it then this can result in a withdrawal syndrome so the testosterone can reduce to levels below where you started. Taking Bicalutamide prior to ADT should dampen down the excessive flare that the ADT on its own would cause and result in a reduction in testosterone to castration level within 3 to 4 months. Having looked into the mechanism I am not sure that the monthly Prostap injection would be of any use as you would not see any meaningful testosterone reduction in that time, in fact you would probably see a rise before you are due to have your next injection.

Do not beat yourself up thinking it is something you may or may not have done. The general recommendation is to reduce alcohol consumption but everything in moderation is a good maxim. If you were having radiotherapy or chemotherapy then abstention is recommended.

Thanks again for your reply and reassurance. ;-)

What 'worries' me (in a very low level meaning of the word, given most of this is out of my hands anyway) is that my Consultant Oncologist seemed to think my results were 'pretty unusual / unexpected' and that leads on to all the 'If only' I'd asked for another blood test in-between or some such?

But isn't hindsight a wonderful thing. ;-)

Foresight would also be handy, like making the effort to pay for parking, (minimum 4 hours) and be out in half of the 20 mins you got free. Or paying at all when you spot a 'Enter your reg here and park for free' when inside the building. It's not the money, it's the lack of communication from the hospitals. They texted me 3 reminders to attend the appointment and you would have thought one of them could mention the parking setup?

Your results are pretty unusual in that it is rare for the ADT implant to fail due to poor delivery. I can't find any evidence of papers reporting a failure due to a person not responding to the treatment - the reason a switch to a different injection is usually because of unfavorable side effects. The only advantage of an earlier blood test would be to monitor the PSA response which might have sent warning bells when it wasn't reacting as expected, but then time is needed to have the sequential tests done to get confirmation of the results. Having a blood test at the beginning of March is a good idea as it will give you a new baseline.

Hi Able,

All the men here including my husband started to suffer side effects after two months. Mainly hot flushes, sweating and fatigue. You may be lucky not to have side effects but this couple with the fact that testosterone and PSA not dropping substantially could suggest that the HT is not working as it should. No wonder the consultant is confused. There are many different HT on offer. It is good that you question it and get it sorted. Please let us know after you will talk to the consultant again. As for the diagnosis, if you click on your profile you can put all your detailed diagnosis there so all members can follow. 

 Don's worry you are on the case and you will sort it out.

Best wishes

Dafna

Thanks. I'm trying to get an appointment confirmed (and get my CNS team to administer the HT) as when previously trying to get stuff like that done on the fly, haven't had much luck. ;-(

Like 'I'm here, with the treatment, you are not only a RN but one of my CNS team, how long would it take ...'?