I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Baseline testosterone level.

User
Posted 08 Jun 2025 at 13:21

Firstly, thank you to everyone who has contributed thus far to my previous posts as I begin to understand my treatment choices.

One option I have been offered, that of RT + ADT has the hormone medication I have been fearing, and for a 3 year duration the oncologist tells me.  There are so many side effects, and yes, comments on earlier posts suggest it's not impossible to experience few or none, but still I'm very much in "surgery if it's offered" camp. (I am yet to see the surgeon and have a PSMA Pet scan the same week).

The point of this post is to ask whether a patient's existing testosterone level is measured before medication? If you've got a low level to start with, can that influence treatment or do the drugs have less side effects if they have less to do?

I'm single, have no libido or ambitions in that area anyway, as I'm more interested in cycling, sailing and photography, so there are a few side effects that probably won't bother me any in any case?!

T3b N0 M0 Gleason 3+4 PSA 7.8 Age 67

User
Posted 08 Jun 2025 at 19:17

You may find it varies from Trust to Trust. I'm in SE London. I had RT and three years of ADT. My testosterone was not measured before treatment started. Neither was I told how long it would take for my T to return after treatment was over. In my case I came off ADT January 2023. There was no return of T during 2023, then a slow creep back last year. I am now just within the normal reference range albeit right at the bottom.

I doubt your pre-treatment T levels will influence your treatment plan. The whole point of ADT is to stop production completely so that should go ahead regardless of your natural T level. As for side effects I suppose if you have a naturally low level of T you may experience fewer side effects from the loss than someone with naturally high levels.

Good luck

Stephen

User
Posted 08 Jun 2025 at 20:00

Thanks Stephen. Wishing you all the best.

Edited by member 08 Jun 2025 at 20:09  | Reason: Not specified

User
Posted 08 Jun 2025 at 22:24

You could ask to have your testosterone levels checked and it would be useful to know. It's not standard practice, though it's a handy figure to have for future reference.

Testosterone is important for us for various reasons. Without it we can suffer from, lowered muscle mass, raised blood pressure, higher cholesterol levels and reduced bone density. All of these are a short term hazard during HT.

Your libido might not be high but it would be unusual if your testosterone is super low. Even with low level testosterone they'd still give you HT if you went in that direction but I don't know if there's any connection between having a lower natural level of testosterone and being less affected by HT. Based on the experiences of a very few people here, the effects of HT can vary significantly for people who have "normal" testosterone levels.

Jules

 

Edited by member 08 Jun 2025 at 22:35  | Reason: Not specified

User
Posted 09 Jun 2025 at 06:11

Thanks Jules.

User
Posted 09 Jun 2025 at 09:03

Hi, my testosterone wasn't measured before I started on ADT. I would have liked to know what it was, just to see if I ever get back to it.

I have a very similar diagnosis to you, but I've been told I'll be on ADT for 2 years rather than 3. Possible geographical variations on how the NHS do things?   

User
Posted 09 Jun 2025 at 09:37

That's interesting John. I'll ask my oncologist next visit. It may be a worst case scenario as she's sending me for a PET scan to check on lymph involvement. It's possible she worked on the basis it would be 3 years if they found there was?

User
Posted 09 Jun 2025 at 11:28

The PET scan is a really good idea. It's not always offered as an option but it will show up lymph nodes and some detail around the prostate. If it picks up lymph node involvement it almost certainly means RT/HT but it doesn't necessarily mean 3 years. If you go down the RT/HT path it will be a question of monitoring your psa along the way. If it stays low it can mean reduced time on HT. There's several of us here who were initially told it would be 3 years only to reduce it to about half that when psa results stayed undetectable.

With a T3b, a gleason 7 and a psa of 7.8 the signs are that you've caught this early which is always good.

Jules

User
Posted 09 Jun 2025 at 11:31

Thank you Jules. That's such a positive reply and one for which I'm truly grateful.

User
Posted 09 Jun 2025 at 11:39

Thanks for me too Jules, I'd not considered that. My PSA since start ADT has been <0.1 and same since starting and finishing radiotherapy.

I'll ask at my next review. I've not found side effects too bad, but they do seem to be increasing, if there's a option to stop early without any detrimental effect to recurrence I'd take it! Though I'm only on 2 years anyway.

Edited by member 09 Jun 2025 at 11:39  | Reason: remove extra words!

 
Forum Jump  
©2025 Prostate Cancer UK