My husbands recent diagnosis of advanced prostate cancer

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Posted 11 Feb 2023 at 17:25

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

User

Posted 11 Feb 2023 at 17:43

Yes, everything is fine my end: PSA less than 0.1, not wearing pads, sexual function is ok without the need for pills.

Hopefully, the next test in 6 weeks will reassure you

Ivan

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Posted 11 Feb 2023 at 17:49

It’s essentially very good news Elaine. You have to remain totally positive at this stage. If you look at my stats I’m hopefully going to reach my 56th birthday in June and that will be 8 years after the worst post op psa ever of 1.5. My psa has hit over 1000 and I’m still here moaning away. A friend of this forum has his tests done each 3 months but simply requests no results whatsoever unless action is required. Maybe this would be more suitable for you both. Yes still a worry , but it could be years before the Onco gets worried enough to take action. You’re doing fine / amazing. Keep on living and enjoying x

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Posted 11 Feb 2023 at 19:05

Far too early for you to worry. Was the blood sample taken at exactly the same time of day on both occasions? Is there any possibility of a bit of infection? Had he had an orgasm before one and not before the other? So many variables.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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Posted 11 Feb 2023 at 22:38

Originally Posted by: Online Community Member

Yes, everything is fine my end: PSA less than 0.1, not wearing pads, sexual function is ok without the need for pills.

Hopefully, the next test in 6 weeks will reassure you

Ivan

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

User

Posted 11 Feb 2023 at 22:47

Originally Posted by: Online Community Member

Thank you Chris.

I have often read your stats and you truly are an inspiration to many on here (including us). You’re doing amazing and I’m sure this will continue for a very long time.

The not knowing results sounds a good idea but realistically that would never happen for me ha! I struggle just to wait the 3 months each time…and have to restrain myself from ringing the docs every hour to see if results are in 🤦🏻‍♀️😂

I know we’re still in a really good position at the moment but further treatment has always been a worry for us and just feel like we could be a tiny step closer to that. Having said that….how bloody lucky are we that there is an option of further treatment, so grateful for where we are when I think of how different it could have been x

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Posted 11 Feb 2023 at 23:09

Originally Posted by: Online Community Member

John had one blood sample tested at two different labs and got slightly different results. He has also had one test at the GP at 8am and another at the hospital less than an hour later and had two different results, deapite both being tested at the same lab. PSA can fluctuate small amounts depending on the time of day, the lab doing the test and / or due to machine noise.

Far too early for you to worry. Was the blood sample taken at exactly the same time of day on both occasions? Is there any possibility of a bit of infection? Had he had an orgasm before one and not before the other? So many variables.

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

User

Posted 11 Feb 2023 at 23:55

Elaine, similar experience to Lyn, two vials filled from the same draw off , sent to the same lab at the same time and had a difference of 0.01.

His histology was negative margins and no extraprostatic extension, which was good.

It took nearly three years for my PSA to go from 0.03 to 0.2 and my histology was not good. I think you can relax.

Thanks Chris

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Posted 12 Feb 2023 at 11:42

Originally Posted by: Online Community Member

Elaine, similar experience to Lyn, two vials filled from the same draw off , sent to the same lab at the same time and had a difference of 0.01.

His histology was negative margins and no extraprostatic extension, which was good.

It took nearly three years for my PSA to go from 0.03 to 0.2 and my histology was not good. I think you can relax.

Thanks Chris

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

User

Posted 12 Feb 2023 at 12:20

I think you have always known that the original diagnosis could have been correct and the second opinion could have been over optimistic but you made a decision to go for the op anyway. Having committed to the BIG decision, try not to waste these months / years worrying about what is likely to happen next. Otherwise, you don't get any of the benefits of the op, only the downsides.

For context, it is now more than 25 years since my dad had his RP and 13 years since his biochemical recurrence. His PSA rises are very small - doubling time is around 5 years - no scans done, urologist predicts that it could be another 10 years before he needs any kind of salvage or holding treatment. That would make him around 95 when he starts HT !

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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Posted 12 Feb 2023 at 12:46

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

User

Posted 12 Feb 2023 at 13:15

Try not to worry Elaine. I know easier said than done. Like everyone else on here you’ve been through some very rough times, so try not to worry about the very small stuff. Rob’s PSA is still classed as undetectable. Worry doesn’t change anything so try and re-focus and think positive. I know it’s hard but worry can be crippling. We both know that from how much we both worried about our husbands just over a year ago. The mental torture is almost unbearable. Try not to put yourself through it again without good reason. XX

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Posted 12 Feb 2023 at 14:25

Originally Posted by: Online Community Member

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

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!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Feb 2023 at 14:31

Originally Posted by: Online Community Member

Thank you and hope things are really well for you both x

I think I was just interested in peoples thoughts, I know myself it would be undetectable at other labs but like to try and stay ahead of the game ha!

I can honestly say though I don’t even feel remotely close to what I did in 2021 and really not over worrying at the moment. I think regardless of the PSA result…it’s always there in the back of your mind and that’s how I feel still.

Take care x

User

Posted 12 Feb 2023 at 14:44

Originally Posted by: Online Community Member

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

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

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

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Posted 12 Feb 2023 at 14:55

Hi Elaine, I can see you have got this in perspective at the moment it is nothing to worry about. It's worth making the post because in a few years hopefully we will look back on this thread and see that a few blips up and down amount to nothing more than a hill of beans. Of course we might be looking back and say 'ah that was the start of a recurrence' but it's too early to say now, and I hope it is the former not the latter.

Whatever it amounts to in the future, 18 months ago you were dealing with a PSA of 8.3, today you are dealing with a PSA of 0.029. So you have came a long way in the right direction.

Dave

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Posted 12 Feb 2023 at 18:33

Originally Posted by: Online Community Member

Whatever it amounts to in the future, 18 months ago you were dealing with a PSA of 8.3, today you are dealing with a PSA of 0.029. So you have came a long way in the right direction.

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

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Posted 13 Feb 2023 at 22:24

Wise words Lyn x

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Posted 22 Mar 2023 at 12:42

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 🤷🏻‍♀️

User

Posted 22 Mar 2023 at 13:28

Elaine, any rise no matter how small is always unwelcome. It took me three years to get from 0.03 post op to 0.23. I kept being told it could level off at 0.1, sadly it didn't, my surgeon did say he had many patients at 0.1.

Good look for next test.

Thanks Chris

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