My husbands recent diagnosis of advanced prostate cancer

Really so pleased for you and your hubby Elaine. XXX

Thanks so much Chris, really means a lot. Hope you are well xx

Very good news. Nice to see the testosterone recovering, back in the normal range.

That's a really uplifting post Elaine. Just what I needed. Good luck to both of you.

Hey Elaine,

Of course you want to keep posting in here to provide hope,because its what you do well all too brilliantly! 

Super chuffed for you both.

Jamie

Thanks Dave. Yes it’s definitely noticeable that his T has risen, just thankful the PSA hasn’t followed it yet and hope it never does 🤞🏼 Hope all good with you x

Thank you Chris. Hope you’re doing ok and things settling down after RT x

Thank you Lyn. Really can’t believe where we are. And thanks so much for all your help and advice along the way….it’s been invaluable x

Hi Barrie & Jeannie,

I have responded with some information on your other post aswell.

Just about our situation though. We were very fortunate that my husbands diagnosis changed from advanced to locally advanced so this meant he was able to have the operation and he is currently doing very well. Really wishing you and your husband all the very best.

So latest results:

PSA 0.029 Testosterone 10.1

So PSA no longer undetectable at the lab we use 😢 although I know it would still be undetectable at other labs.

Of course I don’t know what his previous PSA numbers were as they came back <0.025 so not sure how much it has risen in 3 months.

Not really sure what to feel. We’ve always known further treatment was highly possible but I guess you just keep praying you never have to deal with prostate cancer again. I’ve certainly not gone into panic mode but getting the occasional churns in my tummy.

Too early to know what is happening, but has anyone had a slight rise at this point after RP and then no more 🤷🏻‍♀️

Also Rob has in the past few months started heart medication called ADIZEM….could this have an impact on PSA? He’s having an ablation beginning of March so hopefully he would be able to stop the medication then.

Any thoughts appreciated xx

Thanks for your reply Ivan. 

Yes completely understand that we shouldn’t really be worried at this stage….it does cause a bit more anxiety I guess with testing to lower levels. I wasn’t really sure that the PSA could go up slightly at this stage and then stabilise again so hopefully that is the case or it’s just a blip.

We always expected this because of the lymph node involvement but the longer you go with undetectable the more you hope you were one of the very lucky ones.

Getting another test in 6 weeks time. I would struggle to wait 3 months this time and we go away for a while so hopefully will get a better idea then. 

Hope things are going well for you

Great news Ivan. So pleased things are going really well for you x

Thanks for your reply Lyn.

This is his 5th post op PSA. The first 1 was done in London at the hospital but the rest have been done locally. He always goes to the same pharmacy so assume they’re sent to the same lab but I guess you never know. I think all but one have been done in the morning (the latest one was am). I suppose with this test I just don’t know quite how much it has fluctuated with not knowing the exact figure from last time. 

Like you say so many variables, hopefully we will get a better indication in 6 weeks time.

I emailed his consultant with the results and of course he isn’t concerned yet and it would still be undetectable at their lab. He said “still fabulous PSA. Noteworthy but not an indication to add more treatment yet”.

Happy with that and just need to chill for a few weeks x

Thanks Chris. Definitely lots of explanations of what might have happened….fingers crossed it is just simply one of those reasons.

He did get a good post histology, it’s the lymph node that has always bothered me I suppose. I know it escaped the prostate at some point so always concerned one little bit was missed and just waiting to grow again.

Not stressing though, I know we’re in a very fortunate position so will just carry on getting on with life and just keep it monitored. 

Hope you are doing ok Chris x

Lyn, if the original bone met was there do you think he would have had a more noticeable PSA post op?

Yes you are right though, and really we have already benefited so much from the decision, we had such a fabulous year and got to do so much purely because Rob felt more positive with the news we were getting and support from consultant. So 100% no regrets. Our plans for this year won’t change either, France soon for a month and then finally doing our delayed couple of month tour of Scandinavia.

Your dads story is incredible, he is not on any treatment at all? I really think I’ll feel better when I have an idea, if it is rising, at what rate? It’s just good to hear other stories and opinions. Don’t feel I’m stressed about this but just don’t want to become complacent either. 

Lots of great support on here as usual which I am truly grateful for x

Who knows, Elaine 🤷‍♂️ Although it hasn't been proved yet, the theory coming out of some recent research is that removing the prostate can put mets to sleep for a while. We don't see men with advanced PCa routinely being offered RP yet but it may come in the future; I think there will always be a tension between slowing it down and living with unnecessary side effects although you have not had great problems with those. 

In the meantime, you have lots of lovely things to look forward to and plan for. 

Yes, Dad is amazing. He was 60 at diagnosis and had what, at that time, was experimental surgery ... removing the prostate but trying to leave the nerves intact. The urologist had just been to America to learn the technique and, because Dad was one of the first in the UK, he had to pay many thousands of ££££s. Easy to see why, when John was diagnosed, we paid to have the same surgeon! He has had no treatment since the BCR was recognised - he still has a sex life and doesn't want to give that up until he absolutely has to!  

I suppose I’m just hoping the PSMA pet scan was right as it found it in the node but not bone. The MDT at the Marsden disagreed before the pet scan but had that just to try to confirm exactly what we were dealing with.

Yes recovery been great….would never believe he will turn 75 this year! I’m putting that down to him having his young wife 😉😂

Both stories of your dad and John are really inspirational. I guess we’re all just looking for that little piece of hope each time that everything will be ok and reading about the men in your life it really does give us every reason to believe that anything is possible x

Thanks Dave.

Yes hopefully the former as you say. It’s a really good way for me to keep a check on ‘our journey’ too. If I look back to the first posts on this thread we’ve come a long way.

Keeping positive and keeping loving life 👍

Hope all really good with you x

Edited by member 12 Feb 2023 at 18:34  | Reason: Not specified

Well seems it might not have been the blip I had hoped for. Latest PSA 20/3/23 0.044 so a rise of 0.015 in 6 weeks.

Next test in 6 weeks and then appointment with urology. 

I suppose we have that same dilemma whether to risk an early PSMA pet scan like ulsterman or wait for an ‘official’ biochemical recurrence 🤷🏻‍♀️