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My husbands recent diagnosis of advanced prostate cancer

User
Posted 21 Aug 2022 at 07:41
Fantastic news Elaine. Long may it continue
User
Posted 23 Aug 2022 at 08:35
Thank you Jamie, Jim and Jeremy.
Sorry hadn’t seen your replies as not on the forum as much. Not sure a day went by the last 12 months without going on to see how everyone was getting on, but I think it was beginning to take over so need to step back a bit. Although I do miss it!

We saw the consultant after PSA and T results. He’s really pleased with the progress so far and maybe even slightly surprised that something hadn’t shown up by now….he’s hoping rob is an exception to the rule 👍 let’s hope so! I know anything can change at anytime but just got to try to enjoy where we are right now.

From an incurable diagnosis last July to an undetectable PSA with rising testosterone and no HT injection since Nov 21….well we really couldn’t have asked for anymore, and feel so fortunate. Also despite age being 74 now he’s recovered so well and quickly from the op. ED of course still an issue but little improvements are happening.

Sending all our best wishes to everyone on here and wishing you all well x
User
Posted 23 Aug 2022 at 12:16

good to hear such positive news Elaine all the best going forward gaz

User
Posted 24 Aug 2022 at 09:56

Originally Posted by: Online Community Member


good to hear such positive news Elaine all the best going forward gaz



Thanks Gaz. And to you x

User
Posted 31 Aug 2022 at 12:52

Really so pleased for you and your hubby Elaine. XXX

User
Posted 01 Sep 2022 at 15:21

Originally Posted by: Online Community Member


Really so pleased for you and your hubby Elaine. XXX



 


Thank you so much xx hope all good with your hubby and family too xx

User
Posted 10 Nov 2022 at 15:58

Well another 3 months has passed and so another PSA test. Although a couple of sleepless nights, nervous as hell with a churning stomach, I think my anxiety levels improved this month on last….something to be thankful for.


Anyway latest test PSA <0.025 🙏🏼 Testosterone was done 3 weeks ago and has risen to 10 👍


I really do have to keep pinching myself, I can’t believe how different things are to his original diagnosis. I feel we have been so so lucky and fill up everytime I think of it! How different things could have been now. He’s been so fortunate to have recovered so well and quickly from his op aswell, so regardless of what the future holds we have been able to have an incredible year with lots of adventures. Forever grateful ❤️


I want to keep posting in here to hopefully provide some hope for anyone just starting this journey. It’s been a difficult few months on the forum with of course some really sad stories that have brought me to tears on many occasions. As many people say on here we are one big community and support for each other, and I do constantly think of all who are still having more challenging times and really do send all my best wishes to you all x

User
Posted 10 Nov 2022 at 16:09

Well said Elaine. Really am very thrilled for you and your OH. 
What a difference a year makes eh! 
RA XXX

User
Posted 10 Nov 2022 at 16:18
Lovely post Elaine and well said. So happy for you both right now x
User
Posted 10 Nov 2022 at 17:24

Originally Posted by: Online Community Member


Well said Elaine. Really am very thrilled for you and your OH. 
What a difference a year makes eh! 
RA XXX



Doesn’t it just!


Thank you RA. Hope you and hubby are doing really well xx

User
Posted 10 Nov 2022 at 17:25

Originally Posted by: Online Community Member
Lovely post Elaine and well said. So happy for you both right now x


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

User
Posted 10 Nov 2022 at 18:34

Good news for you both I am really pleased for both off you all the best. Gaz 👍

User
Posted 10 Nov 2022 at 20:06

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

Dave

User
Posted 10 Nov 2022 at 20:35

Simply brilliant news, so pleased for you both


Jim

User
Posted 10 Nov 2022 at 20:45

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

User
Posted 10 Nov 2022 at 20:47
Wonderful news! So pleased for you both xx
User
Posted 10 Nov 2022 at 21:07

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


 

User
Posted 11 Nov 2022 at 07:18

Originally Posted by: Online Community Member


Good news for you both I am really pleased for both off you all the best. Gaz 👍



Thanks so much Gaz, hope you’re doing well x

User
Posted 11 Nov 2022 at 07:21

Originally Posted by: Online Community Member


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



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

User
Posted 11 Nov 2022 at 07:24

Originally Posted by: Online Community Member


Simply brilliant news, so pleased for you both


Jim



Thanks so much Jim. Hope your recovery is continuing to go well 👍 x

User
Posted 11 Nov 2022 at 07:29

Originally Posted by: Online Community Member


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



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

User
Posted 11 Nov 2022 at 07:30

Originally Posted by: Online Community Member
Wonderful news! So pleased for you both xx


Thank you Jayney, ditto xx

User
Posted 11 Nov 2022 at 07:39

Originally Posted by: Online Community Member


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 so much Jamie. So pleased that you’re recovering well from your op too with great histology report and PSA.


I do believe in never giving up hope that things can change and improve, luckily for us this has very much been the case so far 🤞🏼 X

User
Posted 11 Nov 2022 at 21:59
Great result
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Nov 2022 at 03:04


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

User
Posted 01 Dec 2022 at 16:22

Hello, we have just joined this site and saddened to read your post.  Can you tell us how things are now?  My husband Barrie has advanced terminal cancer and to be honest with everything concerned I/We feel totally alone.  Any support would be appreciated.


Thank you


Barrie and Jeannie

User
Posted 01 Dec 2022 at 17:39

Originally Posted by: Online Community Member


Hello, we have just joined this site and saddened to read your post.  Can you tell us how things are now?  My husband Barrie has advanced terminal cancer and to be honest with everything concerned I/We feel totally alone.  Any support would be appreciated.


Thank you


Barrie and Jeannie



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.

User
Posted 08 Dec 2022 at 00:54

I’d mentioned previously about Rob getting some heart palpitations. It seems to have only started since his diagnosis, so not sure if it could have been triggered by HT or maybe just the stress of diagnosis etc. Or just completely not related of course!


Anyway he was originally prescribed a beta blocker (bisoprolol), he didn’t start to take them and in the meantime we got an appointment with a cardiologist. We mentioned about his prostate cancer and recovery and he said not to have the bisoprolol as this can cause ED, he then prescribed him a different medication….not sure of the name.


I’m just posting this in case there are others in a similar situation who have been prescribed beta blockers and struggling with ED, this could be an explanation. 


Elaine

User
Posted 11 Feb 2023 at 15:15

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

User
Posted 11 Feb 2023 at 15:27

Sorry to hear that Elaine but I wonder is there any need to be concerned? As you pointed out, many labs only test down to 0.1 (as mine does, after initial testing down to 0.04) and I was told by the specialist nurse who speaks to me shortly after my tests (now every 6 months after my surgery on 21/12/21) that it was because very small movements below 0.1 are often not cause for concern.All it does is create stress to the person receiving the figures. I was also told that the body often creates very small amounts of PSA even when there is no prostate.


 


Ivan

Edited by member 11 Feb 2023 at 15:38  | Reason: Not specified

User
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

User
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
User
Posted 11 Feb 2023 at 19:05
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.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
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
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


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


 

User
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 

User
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
User
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

User
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


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



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


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!  



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

User
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

User
Posted 12 Feb 2023 at 18:33

Originally Posted by: Online Community Member


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. 



 



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

User
Posted 13 Feb 2023 at 22:24

Wise words Lyn x

User
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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