Treatment after prostatectomy and radiotherapy

Hello Fredingtonbf5f6d 

I will stick by my reply to you of a couple of months ago when I said "radiotherapy keeps on working and you reach your nadir or lowest reading 18 months after completing the course".

After radiotherapy it's common to get PSA "bounce" where the PSA rises before settling down and thinking about it a rise from 0.2 to 0.3 is negligible.

I'm sure he will be fine and I assume he's on 3 monthly PSA tests so his team are keeping an eye on him. 

Best wishes - Brian.

Great to know it’ll be a good outcome, thank you! 

Just an update,

I don't think a 'bounce' is always a one size fits all. Having spoken to my husband's team and your wonderful staff here they aren't looking at it that way (he was only given a 50% chance that the salvage radiotherapy would work) though wont do  scans yet as 0.3 often doesn't show anything. Not looking for reassurance - just wondering if anyone else has been in this position? Think we need to be careful when saying "everything will be fine", everyone's story is different.

Hello Fredingtonbf5f6d 

Thank you for the update. You get a PSA "bounce" in about 40% of cases after radiotherapy so I would like to think that's the cause.

What are his team doing then? Waiting for the next 2 PSA tests to see if there is a continued rise?

I appreciate we are all different, I had a scan with a PSA of 27 and nothing showed on the scan. I assume that the plan is to give him a PSMA-PET scan if the PSA rises and to either start Hormone Therapy or Targeted Radiotherapy.

Do let us know how you get on.

Best wishes - Brian.

Just when it gets to PSA .5 they’ll look at scans. Can he have salvage radiotherapy in the prostate bed again? They didn’t mention that. 

I assume he’ll get HT at that point. His PSA was doubling every 3 months before the radiotherapy so I guess it depends on what they do this time. They’re just looking to 0.5 and scans right now. 

Hello Fredingtonbf5f6d 

The common understanding is it's difficult to give radiotherapy twice to the prostate bed, however some hospitals with the newer more accurate SBRT machines have started to do this.

I was thinking of targeted radiotherapy if the cancer had gone "walkabout" say to the elbow.

At a PSA of 0.5 there's an 80% of picking up the cancer on a PSMA-PET scan.

Ht isn't as bad as it sounds - I've been on it for over three and a half years and never missed a days work.

Best wishes - Brian.

Glad HT isn’t too bad for you but keeping an open mind, some people in my husband’s support group have had it pretty rough but some like you have been fine, so we’ll see

HelloFredington, I can well understand your anxiety and the need to know what you are both ‘up against’. I agree that everyone’s journey is different - my husband didn’t really achieve the expected nadir after his radiotherapy but, being also controlled by hormone therapy his PSA was stable at 0.02.  He did, though, bounce to O.2 after the ht stopped. So far he has stayed within that range.

i think you do though touch on a point that needs confirming. To my knowledge, nobody posting here is an oncologist or a urologist. We reply to posts from our own experiences and the information we have gleaned along our PC journey. But, alongside that, we do try to offer support and positive messages - bearing in mind the tremendous anxieties we all experience along this journey

I get really anxious as we approach PSA testing time. It’s a reminder about the vagaries of this wretched disease and how random recurrence seems to be. Can any of us say we ( or our partners) are well and truly cured?

I dread recurrence for my husband and the thought of HT again. As you quite rightly say, some have minimal side effects. Others, like my husband, do not. That again seems to be random! If ht becomes necessary,, I really hope your husband is one of the lucky ones!

I think that the medical and nursing professions just do not understand the mental turmoil us wives experience. I try very much to live in the ‘here and now’, taking pleasure in each day as it comes - but don’t always succeed and find myself thinking about the ‘what ifs?’. Logically I know the waht ifs might not happen so this is wasted energy. Illogically I am scared silly of losing my soul mate!

I think you might recognise some of your own situation within mine?

whatever, I really do wish you and your husband all the very best and hope that darned PSA starts to go downwards or, at least, does not rise further. You are not alone on this journey - we are stumbling along besides you  and ready to pick you up should you fall.

xxx

Thank you! It’s all of what you have said! It helps hearing about different experiences, I always hope for the best, but knowing the treatments others have had helps prepare me and takes away some of the anxiety. 

Who knows whether my husband will fall in a 40 or 60 percent statistic but the knowledge of what decisions might be made makes me feel less vulnerable.

Enjoying the day to day small things is definitely the way to go but with a little bit of knowledge behind me! 

Really appreciate your support

Thank you