Year 2 of Decapeptyl

Hello Richard (Racketballplayer ) 

I am one of those who stops and starts HT. If you read my profile I started off with a "curative pathway" but with an initial PSA of 182 I thought no!

Sure enough the HT/RT hasn't cleared the cancer and I have what's called a "biochemical recurrence", and now incurable.

The idea of stop / start HT is not to make things easier for me - it's to try and ensure the Decapeptyl keeps on working and the cancer does not get used to the drug. If it does then we need to open the toolbox and step up the treatment.

I am aware your PSA results are now good - you have just had your 6 month injection with one to go. IF and I am sure you do feel the HT is affecting your Quality of Life then you need to have a chat with your oncology team about calling it a day and not having your final 6 monthly injection - but that's a matter for you and the team. 

I hope that helps.

Best wishes - Brian.

Hi Richard, my husband (T3a N0 M0 Gleason 4+3 PSA 10) was treated with radiotherapy . and  decapeptyl. He couldn’t continue with the decapeptyl after 18 months because of the side effects. It also took a considerable time to recover after stopping the ht in May 2024. it is a difficult balance between quality of life and potential loss of some quantity of life - a thought that plagues me!

at the lowest point, his PSA was 0.024. We were told to expect a bounce after stopping the ht and that did happen. Last PSA in July was 0,36. 

Our gp surgery take the blood but it is monitored remotely by somebody (? Nurses) at the hospital. He has been discharged by the oncologist.

my husband was advised by the oncologist to stop the ht as he was getting so dragged down with it. The fact this was an oncology recommendation is reassuring so I would advise you not to stop without discussing with your doctors and listening carefully to what they say.

HT is brutal for some men and it sounds as if you and my husband have been unfortunate to belong to that group. 

Do you have a partner? If so, have any words of advice been offered? I told my husband at the time that I hated seeing him struggle, there were potential risks in discontinuing early but that there seems to be little evidence to support the length of time for ht for his stage of cancer ( as the oncologist had initially told us and as we had been told it would be 6 months, 2 years and 3 years by various professionals). I did, though, emphasise that he was in control, nobody could force the injections on him and only he could make the decision but I would support him whatever. 

The legacy for me is that ‘what if?’ If it comes back is it because he finished ht too early? Or, would it have come back anyway? We will never know but the 6 monthly tests are a time of heightened anxiety.  But, that might have been the case if he had taken the ht for longer? Life is a gamble sometimes.

good luck!

Many thanks for your reply I feel just putting up a post sometimes help get things off my chest. Thanks for clarifying the stop/start process. I will see how my next PSA result goes also in a couple of weeks I think the tension of that is on mind.

best wishes Richard 

Many thanks WW

I think my 3 month PSA tests are the source causing anxiety. My initial PSA of 135 Gleason 3+4 T3a plays on my mind with the high PSA aspect . I was also discharged from oncology with a PSA of 1.7 after one post RT test. I have posted before saying I felt slightly abandoned by oncology and with my local GP services not understanding HT at all. Others have said it’s a post code lottery in the aftercare. I have another PSA test in a couple of weeks I will see how I feel after that.

many thanks for wise words.

best wishes Richard 

Hello Richard (Racketballplayer) 

I can't get my head around this:

Racketballplayer said:

. I was also discharged from oncology with a PSA of 1.7 after one post RT test. I have posted before saying I felt slightly abandoned by oncology

You had a very high PSA to set off with. Most GP practices don't have a clue about PCa.

I am a "lucky boy" and live in the Manchester area and come under "The Christie" NHS trust - a specialist cancer trust - my treatment has been amazing! There's no way you should have been just been

Racketballplayer said:

abandoned by oncology

I would be on the case right away - PALS, Formal complaints, my local NHS Trust Chairman and if needed my MP. 

I am sorry but you need to be proactive and get back on board with oncology - the GP isn't good enough - end of story.

Sorry but your treatment is shabby at least - please do get on the case!

Best wishes - Brian.

Thanks Brian, I have got an enquiry/ review going on with my local MacMillan group who are investigating via my local NHS trust the widely varying different discharge scenarios within the groups members, mine being the quickest to date. If this comes to nothing I will push on as your advice. Early discharge to GP does seem a common occurrence in my region .My local MacMillan group have this on their agenda. My experience of my Oncologist/CNS doesn’t give me any confidence to go back to them so I don’t know what to do there.They wrote to my GP stating the mild anemia I was/am diagnosed with about 7 months into HT was nothing to do with my HT treatment and in fact hadn’t heard of this being a side effect before!

many thanks for your advice and reply. Sometimes writing out your concerns in these posts gets things of your chest also.

best regards Richard