Intermittent hormone therapy - side effects

Welcome, and sorry to hear about your diagnosis.

I can't directly answer your question about intermittent hormone therapy, but I can offer my experience of being on full-time hormone therapy for the past 5 years.  I was diagnosed in 2019 when I was 54, and started on zoladex injections straight away, followed by chemo and radiotherapy (the full story's in my profile).  In 2021, my PSA started rising so enzalutamide (also known as Xtandi) was added, which has kept my PSA well suppressed. 

I have experienced almost no side effects from the hormone therapy - no tiredness / fatigue, no 'brain fog', no weight gain, not even any man-boobs.  The one side effect I have had is loss of libido.  However, that's just my experience:  others have had significant side effects.          

But being fit & active is an excellent base to start from, whichever option you decide to take.  My 10p's worth is to try the hormone therapy and see how you get on;  you can always stop.  

Hi jkw , sorry to hear about your diagnosis.

I had RT/HT just over a year ago and, common to a lot of people who have had similar treatment, I had 2 main side-effects of hot flushes/interrupted sleep and loss of libido.  Tiredness was related to the lack of proper sleep and not particularly to the RT treatment.  I did not gain a lot of weight.

I am over a year post RT and the main effects of my 2nd and last zoladex injection wore off last summer. I am pleased to say that my sleep is more or less back to normal.  My sex drive is improving with the help of tadalafil but this aspect of our treatment is difficult to cope with.

I have had a few mild incontinence issues but, to be honest, my bladder was never the strongest before all this started anyway!  I am doing kegal/bladder exercises and hopefully they might help.

With regard to your sporting activities - I have been a regular 5k park-runner and kept these runs up during and after my treatment. It is interesting to see how my times were affected.  From being, on average, about a 24min finisher, I probably was about 6mins slower during my treatment. In recent months I am averaging 26mins. So, not quite back to where I was, but getting there and feeling stronger compared to a few months ago.  I think regular exercise is very important for coping physically and mentally with what we go through and would encourage you to try to keep up your sport.

Good luck with everything! 

Your other option of watchful waiting is also surprising - again, with metastases, WW is basically deciding to die without treatment or deciding to wait for more mets and then have HT just to reduce side effects as you become terminal. That is your right if you choose, of course - my father-in-law chose active surveillance (which is what WW is more usually called) and died within 4 years. He wasn't metastatic when he refused to have treatment.

Hi Jkw,

Yes it’s true that some men don’t seem to have many side effects other than inevitable loss of libido. However there are many others (including me) who have had significant side effects…so be Prepared. I have NO IDEA why some men suffer and others don’t but I really wish there was some research on the subject. Is it down to build, your testosterone levels before starting, your fitness levels, or something else? I have no idea. There MUST be a reason and if you’re on it for life I think it’s important,  so that you can try and take steps to reduce them. The only one that really bothers me is joint ache, which many men on here are complaining about at the moment. This can be quite debilitating so I’m still searching for a something to help with this…and will keep searching.

Good luck,

Derek