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

Notification

Error

Breathless in Hereford Decapeptyl / Triptorelin?

Email this conversation Print this conversation
User
Posted 01 Dec 2025 at 19:32

Hiya Out there....

This is an overview of my story:-

I had a couple of friends, one who had just undergone radiotherapy and one who was on active surveillance and so I decided to listen to  'Jon Holmes says the C-word' on BBC Sounds (https://www.bbc.co.uk/sounds/play/p0j4x435 ) (who has my eternal thanks for probably saving my life) and should be compulsory listening for all men "of a certain age"....

So back in March 2024 my PSA was 6.6. In September it had gone up to 7.6, my doctor asked if I would like to be referred to Urology and that was a hard "Yes"!

So, after some probing, some (slightly delayed) MRI scans and a biopsy in November (Search spotify for a playlist called TPPB, ( https://open.spotify.com/playlist/53xOVUa7bAjKktZfvDGiBU ), I received a phone-call inviting me to a meeting with the Consultant Urologist...... at 09:00..... on Tuesday 24th December (never a good time or sign!).

It transpired that I had T3b (Gleason 4+4=8) carcinoma which had broken out of the prostate and into the seminal vesicles. (Does this explain the reduced semen output in the preceding year or so??). So it was a bone scan in January (such a FUN Xmas!), which was clear (thanks to the Consultant Radiographer who called me after only 2 days with the result).

So....

Bicalutamide (OK), then Tamsulosin (which made me horribly stuffed up at night to the extent of keeping me awake), 3 monthly injections of Decapeptyl/Triptorelin, a mapping CT scan (Hint: when asked 'When did you last have a drink, NEVER reply "10 minutes ago", the make you drink more..... Always say how much you have drunk over how many minutes. Instead of 200 ml, I had 700 ml washing around.... Walking was very.... interesting!!) and finally 20 fractions of radiotherapy in May.

My PSA has gone from 7.6 in September 2024 to 0.031 in June 2025 and now 0.014 in November 2025. I'm happy with that current trajectory....

But, BUT...... !!!

What started as mild breathlessness has progressed to such an extent that walking up 11 stairs or a mild slope absolutely wipes me out.

My bloods show mild anaemia, but that has been so since well before the diagnosis and treatment. The rest (B12, ferritin, RBC etc) are all strikingly normal.

So my friends...

Is this common for HT?

How long can I expect it to continue (during and after treatment)?

Any useful strategies?

Should I submit a yellow card to the MHRA regarding adverse effects?

Any help would be gratefully received.

With many thanks 

Jules

User
Posted 02 Dec 2025 at 21:04
Jules, it is a pity that Andy62 hasn't engaged with the forum recently, he had seriously investigated the metabolic effects of hormone therapy and could probably tell you the likelihood this symptom relates to your treatment. It would be worth looking for his contributions to previous threads.

However, anecdotally (i.e. just my experience) I can say that by chance my GP checked my blood characteristics just a month after the last 3-month hormone injection (Zoladex) ran out - I think triggered by my seventieth birthday which happened the same time. He found mild anaemia just as you describe.

To be honest I guessed it was more likely due to the radiotherapy affecting bone marrow in my pelvis, but I really don't know. The GP's response was to organise a repeat blood test in a couple of months to see if it persisted. In the meantime I thought I should make sure I get the recommended intake of iron (we don't eat huge amounts of red meat) and I started taking vitamin tablets incorporating iron at the recommended daily amount. At the repeat test my iron was just inside the normal range, and at a recent test three years later it was still at the low end but a bit higher than before.

But of course I could have been wrong, my low iron could have been a result of hormone therapy not radiotherapy. And you are still on hormone therapy. And I didn't have anything like the breathlessness you describe, which might have a different cause. So worth talking to your doctor.

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK