How long hormone treatment for prostate cancer should continue vs side effects

[Negita43]

 

Background:

Earlier in the year I underwent a successful radiation treatment for prostate cancer in conjunction with a 3 monthly hormone injection.

My PSA before radiation was 43ish and after radiation was around 0.4.

I had the first two hormone injections in Thailand (one before radiation, one after). Both injections were Enantone manufactured by Takeda

In May I had to go to the UK where I had another PSA test (<0.1) and in July a third hormone injection (Prostap- manufactured by Takeda also) I’m pretty sure Prostap and Enantone  are essentially the same.

This week I had another PSA test (<0.1) and am due another hormone injection in the UK early November

I will return to Thailand late November.

I was due to see a UK consultant mid October when I planned to discuss the issue below but now that has been delayed beyond my return date (no appointment in the foreseeable horizon due to the state of the Scottish health service - apparently patients with a new prostate diagnosis take precedence over those undergoing treatment).

I have had some other blood tests over here and everything (including blood sugar and thyroid) are normal except for raised lipids – prescribed Atorvastatin).

So here goes:

I understand the side effects of the hormone injections and I have no problems dealing with “hot flushes” (usually after meals) and a 5Kg weight gain (which I can’t seem to get down).

However, since the initial treatment I have become progressively more lethargic (I am - or was - an active 80 year old) and more importantly becoming progressively more depressed which is having an impact on my day to day life.

So the main question is this – when does the hormone treatment stop or is it a permanent process – anyone have experience of these hormone injections and what happens longer term?

[Sheryl]

What stage is your cancer? Is there any metastasis? 

[Sheryl]

p.S. I forgot to add - but it is very, very important -- how recently have you had a complete blood count done? As the extreme fatigue you report might be due to the after effects of the radiation treatment, which can kick in many weeks later.

 

In other words, might nto be the hormones at all. At hte very least this possibility should be excluded.  Where in Thailand do you live?

[Negita43]

Thanks for your interest Sheryl.

Currently till late November I am in the UK then it will be near Korat.

I have been told no metastasis and the bloods were done about 1 month ago.

However for me there is another strange issue. Before and immediately after the treatment (radiation and hormone) at no point did I have to get up in the night to urinate - now two or three times.

But the issue I am really concerned with is the depression which I thought might be hormone injection related (maybe I am wrong to think this) so balancing the risk reward of stopping them is my key issue at the moment.

 

 

[Sheryl]

19 hours ago, Negita43 said:

Thanks for your interest Sheryl.

Currently till late November I am in the UK then it will be near Korat.

I have been told no metastasis and the bloods were done about 1 month ago.

However for me there is another strange issue. Before and immediately after the treatment (radiation and hormone) at no point did I have to get up in the night to urinate - now two or three times.

But the issue I am really concerned with is the depression which I thought might be hormone injection related (maybe I am wrong to think this) so balancing the risk reward of stopping them is my key issue at the moment.

 

 

You should seek an immediate appointment with your doctor to investigate cause of the fatigue/depression. It could be a number if things. And I suggest resolving this before returning to Thailand.

 

When you do come, bring detailed medical records wih you. 

[DaLa]

Hi Negita, I'm at a similar stage as yourself. Diagnosed 14 months ago , 28 shots on the Linac, 5 shots of hormone. I suffered a major reaction to the treatment at around the 22 Linac shots which hospitalised me and since finishing the full course have been on a steady course of regaining strength and health. I would not say I have any issues that are not manageable or restricting my lifestyle however there have been and are side effects as follows:

 

Hormone treatment hot flushes are crazy in a hot climate and when they occur it feels like my head is boiling. I would not say it has altered my moods and certainly not led to depression. Decreased libido but not completely destroyed and I didn't put on any weight. Benefits are I am now always correct when I have a discussion with the wife.

 

Before diagnosis and treatment I was visiting the bathroom 3 times a night and this is still the case. It's a combination of that and age that leaves me tired in a morning. Personally I believe most of my lethargy can also be put down to age, I'm 'only' 71 but if you're active at 80 then I would take that as a bonus.

 

My PSA is <0.08 and I will continue with the hormone injections for another 9 months (2 years in total).  I understand once they finish my PSA may increase. Obviously staying in the UK will allow you treatment for free, however I opted to pay and have all my treatment in Thailand (Siriraj Bangkok). Although this is a public hospital the treatment and service has been excellent, and I hate to say this calm and civilised compared to some of the situations I experienced in the UK.

 

[Negita43]

5 hours ago, Sheryl said:

I suggest resolving this before returning to Thailand.

Given the state of the NHS in the UK that is not possible as I explained in the initial post I have spoken with the hospital and no follow up appointment is forthcoming.

 

Here are some figures from 2022 ( and by all accounts they are now worse).

 

https://www.bbc.co.uk/news/health-63905269

 

The UK NHS is very structured and access to consultants is only via a referal via the local General Practictioner (GP).

 

Appointments to speak to the local GP (often only by telephone) regularly take 3 weeks to fulfil which is the only route to get the hospital to review my case - even if the doctor agrees to refer then there is the wait to get a new appointment.

 

Thanks for your help but even though it will cost me money I will have to wait until I am back in Thailand to revisit the excellent doctors there to see if the depression is the result of something else or the hormone treatment.

 

Thanks again