After Hormone Therapy Stops

Good morning Cinderella and the Ugly Sisters and welcome. You are by no way alone in not achieving a negligible PSA after having radiotherapy and the injection/implant. From reading between the lines you are on a curative pathway and have been on hormone therapy for a set period of time? If this is the case then you will be monitored with regular (probably 3 or 6 monthly) PSA tests. There is a well documented phenomenon called the PSA bounce which is a small rise in the PSA which can occur around 12 to 18 months post radiotherapy but the level normally returns to the level prior to the bounce. Once you come off HT completely it is expected that the PSA will rise a little bit and then settle at a new base line as testosterone levels return. How long this takes is usually determined by the type of injection/implant you have had and it's duration but you are normally looking at 6-9 months for your libido and erections to start to come back (if you lost them) but it can take a lot longer and some men benefit from speaking to their doctor and being referred to an incontinence team who have many options available. The numbers the experts are looking for is to keep the PSA rise to less than 2 above the nadir (lowest level you achieved post radiotherapy). There is also another figure based on the velocity or rate of the increase in that they want to check how quickly the PSA rises and would start to think about doing further investigation if the rate doubles in less than 6 months using 3 readings taken fairly close together as confirmation because the PSA can bounce around a little bit.

As for treatment options in the future, there are many but this would depend on where they find the cancer cells lurking. There is a more accurate scan called a PSMA PET scan which can pinpoint pretty accurately if and where the cancer has set up residence. If only in 1-3 spots then it might be possible to treat them with a focal therapy. If more widespread then a systemic approach could be taken but the aim should be to try and keep you on the curative pathway. 

It would help us to help you if you could update your profile by putting in your initial PSA at diagnosis plus results along the way. Also the TNM, Gleason and type of prostate cancer you have, along with the extent of the radiotherapy, plus a brief summary of your journey but only if you feel comfortable doing this. To do this click on the chair next to your name, edit profile, type away and then don't forget to save.

I am sorry to hear that you have been feeling this is a lonely journey but hope that we can help you as a group on here. There are also other things you might consider doing such as looking to see if you have a 'Mens Shed' near you which is a place for men to meet up and just chat, carry on with hobbies or learn new skills. There are also prostate cancer groups in different areas plus many hospitals have Maggie's centres which can provide support. Macmillan also have a support line on 0808 808 00 00.

Please feel free to ask any questions and we will try and help plus you can join in any of the different threads. Our community champion Brian Millibob is in a similar situation to you in that his PSA has not dropped to negligible after having radiotherapy and he has recently stopped having the injection/implant so I am sure he will be along to offer his two penn'orth, but he is currently on holiday so not quite as active on the forum as normal at the moment.

Hi Cinderella and the Ugly Sisters , you have had a great reply from our resident nerd AH (maybe wise owl is better!) and I can’t improve on it.  However, as for anxiety I think it is quite normal at each transition phase to have a heightened stress level.  Try and work on what you know rather than what you imagine, I am years down this path (in my case not curable) but I quite often think down completely stupid paths, only to realise days later that I was wrong.  I am assuming you are on a curative path so make the most of it, live life and try and stay positive.  Best wishes, David

Good Morning (afternoon here!!) Cinderella and the Ugly Sisters 

A very warm welcome to the Macmillan Online Prostate Community from me too - yes I am still on holiday but I need to keep out of the sun!!

I know your feelings very well - I am almost 3 years into my journey - a fellow member of the Gleason 9 club too. In 3 years I have watched my fellow community Members when their PSA has dropped to almost "0" yet mine is still 0.29!!

I have the "feeling" my testosterone levels are rising too and my next PSA test is in February 2025 - although I am not the worrying type. I know I have a decent team behind me (I am under The Christie" in Manchester) and to be honest, I know there are plenty more treatments down the line.

In the last 18 months my outlook to life has changed (I am 69) and I am ready to give up work - I have more holidays - I don't let things worry me - and I enjoy the time with my family more - I even spend more time as a volunteer for Macmillan both here and on other projects so life for me is great and cancer will not define me,

You can read my journey by clicking on my avatar - for me life goes on and if my journey is extended - so be it.

In a nutshell (no pun intended) I am trying to say - grab life and enjoy it - I am doing and to be honest I have no regrets.

Stick with us we are a great bunch.

Best wishes - Brian.