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Almost a year on after RARP

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User
Posted 30 Jan 2024 at 13:56

It's almost my prostate free first anniversary.

I had it chopped out on Valentines day 2023 😍. I think I must have upset the lady in listings.

The removed gland's histology showed T3a, bilateral disease, with EPE, still haven't got a clue about margins, Gleason 9 (4+5). Non nerve sparing, took out seminal vesicles and fatty tissues. Prostate was 25% cancerous, but the other stuff all came back negative.

I've just had my fourth PSA test result. Like the other three, it was undetectable <.02 (The lowest my lab can measure to)

It's been a roller coaster year. I had two last minute cancellations for the op. One for anaesthetist concerns, the other due to bed shortage. Both were hard to bear, causing a two month delay, during which as a temporary stopgap, they put me on Bical.  

I was lucky, the op was an absolute doddle, just an overnight stay.

The catheter took some getting used to, but was no big deal.

Incontinence was difficult for 6 months, but apart from the odd dribble, pretty good now.

My sex life hasn't changed a bit, just like pre op, it's pretty poor and very infrequent. Only kidding darling (Just in case you've found my password)

Joking apart, the biggest issue has definitely been ED. However, after 6 months, I can, with Invicorp injections, still to do the biz. It's nowhere near as good as before, but it's better than nowt.

However, even a year on, I don't feel totally safe. I understand the risks of recurrence, and I don't seem to sleep quite as well as I used to. I still hate PSA time, but it's been made much easier now that I'm having the blood samples taken at my GPs. I had my blood test at 9:10 am, yesterday, and because my GP is on Systmonline, I could view my results at 11am this morning. That saves a lot of stress.

I hope I don't come across as gloating, that's the last thing in the world I'd want to do. I fully appreciate, that thus far, I'm one of the lucky ones and I'm fully aware of those less fortunate than me. 

I've noticed recently, that we seem to have had a bit of a run of bad results on here. I just wanted to balance that out a little, and give a bit of hope to others.

I've only known you for 4 months, but can clearly see that you're a great bunch. I thoroughly enjoy your company, and I'm very grateful for you help and support. I wish you all well. 

PS: This is not a farewell speech. You don't get rid of me that easily

Adrian

 

Edited by member 30 Jan 2024 at 14:25  | Reason: Additional text.

User
Posted 30 Jan 2024 at 13:56

It's almost my prostate free first anniversary.

I had it chopped out on Valentines day 2023 😍. I think I must have upset the lady in listings.

The removed gland's histology showed T3a, bilateral disease, with EPE, still haven't got a clue about margins, Gleason 9 (4+5). Non nerve sparing, took out seminal vesicles and fatty tissues. Prostate was 25% cancerous, but the other stuff all came back negative.

I've just had my fourth PSA test result. Like the other three, it was undetectable <.02 (The lowest my lab can measure to)

It's been a roller coaster year. I had two last minute cancellations for the op. One for anaesthetist concerns, the other due to bed shortage. Both were hard to bear, causing a two month delay, during which as a temporary stopgap, they put me on Bical.  

I was lucky, the op was an absolute doddle, just an overnight stay.

The catheter took some getting used to, but was no big deal.

Incontinence was difficult for 6 months, but apart from the odd dribble, pretty good now.

My sex life hasn't changed a bit, just like pre op, it's pretty poor and very infrequent. Only kidding darling (Just in case you've found my password)

Joking apart, the biggest issue has definitely been ED. However, after 6 months, I can, with Invicorp injections, still to do the biz. It's nowhere near as good as before, but it's better than nowt.

However, even a year on, I don't feel totally safe. I understand the risks of recurrence, and I don't seem to sleep quite as well as I used to. I still hate PSA time, but it's been made much easier now that I'm having the blood samples taken at my GPs. I had my blood test at 9:10 am, yesterday, and because my GP is on Systmonline, I could view my results at 11am this morning. That saves a lot of stress.

I hope I don't come across as gloating, that's the last thing in the world I'd want to do. I fully appreciate, that thus far, I'm one of the lucky ones and I'm fully aware of those less fortunate than me. 

I've noticed recently, that we seem to have had a bit of a run of bad results on here. I just wanted to balance that out a little, and give a bit of hope to others.

I've only known you for 4 months, but can clearly see that you're a great bunch. I thoroughly enjoy your company, and I'm very grateful for you help and support. I wish you all well. 

PS: This is not a farewell speech. You don't get rid of me that easily

Adrian

 

Edited by member 30 Jan 2024 at 14:25  | Reason: Additional text.

User
Posted 31 Jul 2024 at 11:22

I've just got my, 18 month, PSA check, still undetectable <0.02. πŸ‘

As delighted as I am, I'm still thinking of you lads, whose results have not been as good.

Best of luck to all of you.

User
Posted 30 Jan 2024 at 14:34

Good hear about your progress Adrian. PSA anxiety is awful so it’s good that your GP has the results online within a day. Up here in Scotland we are still living in the dark ages and I was having to wait at least a week to get the results from my GP only to be told by the receptionist that they were ‘normal’. I’ve even been told by one of them(a bit of a dragon TBH) that ‘Yes, we have the results but the doc has to review them first so I can’t tell you!’😑😑
Now, I bypass my GP and call my CNS who will give me the results as soon as they are in the system.

Glad your PSA has remained undetectable….I will be having a wee celebration if mine ever gets to that level, although up here anything less than 0.1 is undetectable. I actually find it quite confusing when some seem to measure to 2 decimal places and others only 1.

Glad you can see the funny side of your sex life…sometimes you just HAVE to laugh!

You mustn’t feel guilty about being a success story…these kind of stories really help others. Although I wasn’t given the option of the Op, I’m always really pleased to here about success stories no matter what treatment you’ve had.

I don’t think there can be many that feel totally safe after having PCa. What we have to do is just get on with enjoying our lives as much as possible….except around PSA Testing time😱

One of the guys in Maggies came up with a very funny story recently …he had bowel cancer and fitted with a bag. Eventually he decided to go for the reversal and have the bag removed. He came in to Maggies and announced ‘My nickname now is Dyson’…..Puzzled looks by many to which he retorted ‘Bagless!’ 🀣🀣🀣
we have many laughs in Maggies….often at my Expense😩I haven’t been to a meeting since December and am looking forward to ‘Boys Club’ on Friday, followed by lunch with a couple of the guys.

Good luck to you in the future Adrian.😊

Derek

Derek

User
Posted 30 Apr 2024 at 14:33

I've just got my 15th month PSA result, still <0.02 undetectable. I'm over the moon, thanks to all those who've helped me this far.

I hope there are no RSPB in the area because I'm going to murder a few more Old Speckled Hens in the back garden. It's 75 degrees here!

Cheers everyone.πŸ‘πŸ˜Ž

Edited by member 30 Apr 2024 at 15:02  | Reason: Not specified

User
Posted 30 Jan 2024 at 15:45

Great news on your latest result mate πŸ‘ Man of few words today, as I'm just about shut the laptop and bugger off home for the day 😁

User
Posted 30 Jan 2024 at 18:37

Congratulations on your recovery and long may it continue, Adrian. Something for us all to hope and aspire to.

I agree you shouldn’t feel guilty about posting success, it’s inspirational. What will you be doing this Valentine’s day I wonder ? πŸ˜‚

Had the Brachytherapy assessment today and another pipe up my a*rse. Good to go, just need the PSA under control first.

User
Posted 30 Jan 2024 at 19:28

Great news Adrian! 

Very happy to read your test went well! 

User
Posted 31 Jan 2024 at 06:01
πŸ‘All good news welcome on here Adrian.

Long may it continue

Cheers

Bill

User
Posted 31 Jan 2024 at 09:37

Tell her you've got healing hands.........🀣

User
Posted 01 Feb 2024 at 00:13
That's is very good news Adrian. Keep moving in the positive direction.

Richard.

User
Posted 30 Apr 2024 at 15:05

Great news mate! Enjoy those Hens πŸ‘

User
Posted 30 Apr 2024 at 16:02
That’s great news…long May it continue that way x
User
Posted 30 Apr 2024 at 16:19

Great results Adrian congratulations long may it continue.

Jeff.

User
Posted 30 Apr 2024 at 16:20

Great news Adrian, especially as you were Gleason 9. 

Enjoy those beers!

Cheers, 

Kev.

User
Posted 30 Apr 2024 at 16:22

Great news bud enjoy.

Vern.

User
Posted 30 Apr 2024 at 20:53

Well Done Ady, long may the good news continue.

User
Posted 30 Apr 2024 at 21:36

Good to here real life stories.

If it's any consolation I'm pre op and my ED is getting worse by the week, Adrian you are blessed with what you have.

This morning 2 tablets, first attempt 45 seconds dropped off, 2nd attempt maybe 4 minutes.

Ah well, my wife is super supportive, we'll keep trying, we've decided when it finally gives up will go out for fish and chips and then have finger fanny Fridays πŸ˜‚

User
Posted 30 Apr 2024 at 21:46

That’s Brilliant news Adrian, I’m really pleased for you.

Onwards and Downwards,

Derek

User
Posted 30 Apr 2024 at 22:10

πŸ‘πŸ˜

Dave

User
Posted 31 Jul 2024 at 11:41

So pleased for you , in the words of my football team " We march on " 

Vern.

User
Posted 31 Jul 2024 at 12:03

Great news Adrian!

That's got to be worth a celebratory pint or two in the garden 🍻

Cheers and good health. 

Kev.

User
Posted 31 Jul 2024 at 17:36
Great news Mate πŸ‘
User
Posted 31 Jul 2024 at 20:32

Adrian56,

That's great news.  Long may it continue.

JedSee.

User
Posted 12 Sep 2024 at 14:31

Hi Adrian,

 

Thanks for the warm welcome.

I havnt gone down the injection route route yet, as I was told by my Consultant that he managed to save most of the nerves??

Thanks for link, I will check it out. Much appreciated

User
Posted 01 Nov 2024 at 11:06

Morning folks.

Just got my 21 months post op PSA test results back. <0.02 πŸ₯³ 'undetectable'

What's even better is all my routine blood checks are satisfactory. Liver function is spot on, giving me the green light to go to the Club to celebrate. 😁

Good luck to all you lads, who are awaiting results.🀞

Edited by member 01 Nov 2024 at 19:41  | Reason: Typo

User
Posted 01 Nov 2024 at 11:38

Great news Adrian!

 

Enjoy that celebratory pint or 4 😬

User
Posted 01 Nov 2024 at 12:31

Great news mate now relax ! No test for me yet as was put on 6 monthly.

Vern.

User
Posted 01 Nov 2024 at 12:55

Fantastic news Adrian!

Hope you don't work your liver too hard at the club.

Cheers,

Kev.

User
Posted 01 Nov 2024 at 19:23

Great news Adrian, enjoy your beer 🍺 

User
Posted 01 Nov 2024 at 20:47

Good news fella, it's been over 2 years for me undetectable following RP.

Interesting to read in you original post about that cancer monster lurking somewhere in the background. I would guess many of us feel the same, me included.

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User
Posted 30 Jan 2024 at 14:34

Good hear about your progress Adrian. PSA anxiety is awful so it’s good that your GP has the results online within a day. Up here in Scotland we are still living in the dark ages and I was having to wait at least a week to get the results from my GP only to be told by the receptionist that they were ‘normal’. I’ve even been told by one of them(a bit of a dragon TBH) that ‘Yes, we have the results but the doc has to review them first so I can’t tell you!’😑😑
Now, I bypass my GP and call my CNS who will give me the results as soon as they are in the system.

Glad your PSA has remained undetectable….I will be having a wee celebration if mine ever gets to that level, although up here anything less than 0.1 is undetectable. I actually find it quite confusing when some seem to measure to 2 decimal places and others only 1.

Glad you can see the funny side of your sex life…sometimes you just HAVE to laugh!

You mustn’t feel guilty about being a success story…these kind of stories really help others. Although I wasn’t given the option of the Op, I’m always really pleased to here about success stories no matter what treatment you’ve had.

I don’t think there can be many that feel totally safe after having PCa. What we have to do is just get on with enjoying our lives as much as possible….except around PSA Testing time😱

One of the guys in Maggies came up with a very funny story recently …he had bowel cancer and fitted with a bag. Eventually he decided to go for the reversal and have the bag removed. He came in to Maggies and announced ‘My nickname now is Dyson’…..Puzzled looks by many to which he retorted ‘Bagless!’ 🀣🀣🀣
we have many laughs in Maggies….often at my Expense😩I haven’t been to a meeting since December and am looking forward to ‘Boys Club’ on Friday, followed by lunch with a couple of the guys.

Good luck to you in the future Adrian.😊

Derek

Derek

User
Posted 30 Jan 2024 at 15:45

Great news on your latest result mate πŸ‘ Man of few words today, as I'm just about shut the laptop and bugger off home for the day 😁

User
Posted 30 Jan 2024 at 18:37

Congratulations on your recovery and long may it continue, Adrian. Something for us all to hope and aspire to.

I agree you shouldn’t feel guilty about posting success, it’s inspirational. What will you be doing this Valentine’s day I wonder ? πŸ˜‚

Had the Brachytherapy assessment today and another pipe up my a*rse. Good to go, just need the PSA under control first.

User
Posted 30 Jan 2024 at 19:02

Originally Posted by: Online Community Member
What will you be doing this Valentine’s day I wonder ? πŸ˜‚

The same as I do every year. Trying to find a new excuse why I forgot to get her a card. 😁

Edited by member 30 Jan 2024 at 21:27  | Reason: Emoji

User
Posted 30 Jan 2024 at 19:28

Great news Adrian! 

Very happy to read your test went well! 

User
Posted 31 Jan 2024 at 06:01
πŸ‘All good news welcome on here Adrian.

Long may it continue

Cheers

Bill

User
Posted 31 Jan 2024 at 07:23

Originally Posted by: Online Community Member
πŸ‘All good news welcome on here Adrian.
Long may it continue

Morning Bill.

I've just checked your Bio. There are many similarities, we both had robotic surgery, both T3a with EPE. The only difference my Gleason was 9, yours 7, and you're 6 years younger than me.

I find it so encouraging that 7 years on, your PSA is still almost untraceable. That gives me hope that I might be lucky enough to follow suit and avoid recurrence.

 

Edited by member 31 Jan 2024 at 10:36  | Reason: Typo

User
Posted 31 Jan 2024 at 08:53

Originally Posted by: Online Community Member

I'm just about shut the laptop

I had to shut my very quickly, when the wife almost caught me doing some ED therapy. 😁

User
Posted 31 Jan 2024 at 09:37

Tell her you've got healing hands.........🀣

User
Posted 01 Feb 2024 at 00:13
That's is very good news Adrian. Keep moving in the positive direction.

Richard.

User
Posted 30 Apr 2024 at 14:33

I've just got my 15th month PSA result, still <0.02 undetectable. I'm over the moon, thanks to all those who've helped me this far.

I hope there are no RSPB in the area because I'm going to murder a few more Old Speckled Hens in the back garden. It's 75 degrees here!

Cheers everyone.πŸ‘πŸ˜Ž

Edited by member 30 Apr 2024 at 15:02  | Reason: Not specified

User
Posted 30 Apr 2024 at 15:05

Great news mate! Enjoy those Hens πŸ‘

User
Posted 30 Apr 2024 at 16:02
That’s great news…long May it continue that way x
User
Posted 30 Apr 2024 at 16:19

Great results Adrian congratulations long may it continue.

Jeff.

User
Posted 30 Apr 2024 at 16:20

Great news Adrian, especially as you were Gleason 9. 

Enjoy those beers!

Cheers, 

Kev.

User
Posted 30 Apr 2024 at 16:22

Great news bud enjoy.

Vern.

User
Posted 30 Apr 2024 at 16:41

Hey, pack it in you lot.

Your kind comments are causing me to cry into my beer and watering it down. 😭 

😁

 

 

User
Posted 30 Apr 2024 at 20:53

Well Done Ady, long may the good news continue.

User
Posted 30 Apr 2024 at 21:36

Good to here real life stories.

If it's any consolation I'm pre op and my ED is getting worse by the week, Adrian you are blessed with what you have.

This morning 2 tablets, first attempt 45 seconds dropped off, 2nd attempt maybe 4 minutes.

Ah well, my wife is super supportive, we'll keep trying, we've decided when it finally gives up will go out for fish and chips and then have finger fanny Fridays πŸ˜‚

User
Posted 30 Apr 2024 at 21:46

That’s Brilliant news Adrian, I’m really pleased for you.

Onwards and Downwards,

Derek

User
Posted 30 Apr 2024 at 22:10

πŸ‘πŸ˜

Dave

User
Posted 30 Apr 2024 at 22:21

Originally Posted by: Online Community Member

Great news Adrian, especially as you were Gleason 9. 

I'm a realist Kev. T3a, EPE, Gleason 9, means there is still a big chance of recurrence. However, there are others on here who had similar that have made it without BCR. 

Logically, you'd think that if you had a high Gleason, it would raise its ugly head more quickly than a less aggressive one, but I dont think it works like that.

So far so good.🀞

I did over celebrate. Fell asleep on the garden bench and feel a bit stomachy now.🀒

 

 

Edited by member 30 Apr 2024 at 22:23  | Reason: Additional text

User
Posted 31 Jul 2024 at 11:22

I've just got my, 18 month, PSA check, still undetectable <0.02. πŸ‘

As delighted as I am, I'm still thinking of you lads, whose results have not been as good.

Best of luck to all of you.

User
Posted 31 Jul 2024 at 11:41

So pleased for you , in the words of my football team " We march on " 

Vern.

User
Posted 31 Jul 2024 at 11:59

Originally Posted by: Online Community Member

So pleased for you , in the words of my football team " We march on " 

Cheers mate. We're the lucky ones. However on this site, even if things aren't going to plan,"You'll never Walk Alone"

User
Posted 31 Jul 2024 at 12:03

Great news Adrian!

That's got to be worth a celebratory pint or two in the garden 🍻

Cheers and good health. 

Kev.

User
Posted 31 Jul 2024 at 17:36
Great news Mate πŸ‘
User
Posted 31 Jul 2024 at 20:32

Adrian56,

That's great news.  Long may it continue.

JedSee.

User
Posted 01 Aug 2024 at 17:14
So good to see/hear positive news. Thanks for sharing, Adrian. Onward and upward!

Twelve on

User
Posted 12 Sep 2024 at 13:40

Hello all,

 

Ive just joined the forum, and have been reading through numerous posts.

I had my op in August last Year. It went very well, and I was out by lunchtime the next day. I had no problems with the catheter, and it was removed after 10 days. I was one of the lucky ones, as I have had no leakage problems. 

My question is, everything is still dead as a Dodo down below. Nothing, not even a twinge. I've tried the Viagra, and the pump. I've read that it can take up to 2 Years, before seeing any improvement? However a doctor told me that if you have not seen any improvement after a Year, You never will??

Anyone care to comment?

Cheer

Mike

User
Posted 12 Sep 2024 at 14:13

Hello Mike.

Welcome to the forum mate.

I'm pleased the op went fine and that you're not suffering with incontinence. You're a lucky lad.

As for ED. My op was non nerve sparing. I was told I would not get any natural erections again and unfortunately, 18 months on, this has been the case. Invicorp saved me. Now that I've mastered the injecting technique, it guarantees an erection. I'll add a link a thread on the subject.

I was prescribed the drug by my GP following a hospital ED clinic appointment I had 5 months after my op.

https://community.prostatecanceruk.org/posts/t29845-Hooray-for-Invicorp

Best of luck mate.

Edited by member 12 Sep 2024 at 14:14  | Reason: Additional text

User
Posted 12 Sep 2024 at 14:31

Hi Adrian,

 

Thanks for the warm welcome.

I havnt gone down the injection route route yet, as I was told by my Consultant that he managed to save most of the nerves??

Thanks for link, I will check it out. Much appreciated

User
Posted 12 Sep 2024 at 18:14

Good result <0.02.   I wish I knew what my readings beneath 0.05 were.

 

User
Posted 12 Sep 2024 at 19:14

Hi Pete.

Presumably <0.05 is the lowest your lab measured to. 

5 out of 6 of my results were <0.02, they were all from one lab. One of my results was <0.05 but that was a different lab.

Although your results have slightly increased, they look stable and I hope they remain that way. 🀞

Good luck mate.

 

User
Posted 01 Nov 2024 at 11:06

Morning folks.

Just got my 21 months post op PSA test results back. <0.02 πŸ₯³ 'undetectable'

What's even better is all my routine blood checks are satisfactory. Liver function is spot on, giving me the green light to go to the Club to celebrate. 😁

Good luck to all you lads, who are awaiting results.🀞

Edited by member 01 Nov 2024 at 19:41  | Reason: Typo

User
Posted 01 Nov 2024 at 11:38

Great news Adrian!

 

Enjoy that celebratory pint or 4 😬

User
Posted 01 Nov 2024 at 12:31

Great news mate now relax ! No test for me yet as was put on 6 monthly.

Vern.

User
Posted 01 Nov 2024 at 12:55

Fantastic news Adrian!

Hope you don't work your liver too hard at the club.

Cheers,

Kev.

User
Posted 01 Nov 2024 at 14:30

Originally Posted by: Online Community Member

Morning folks.

Just got my 21 months post op PSA test results back. <0.02 πŸ₯³

What's even better is all my routine blood checks are satisfactory. Liver function is stop on, giving me the green to go to the Club to celebrate. 😁

Good luck to all you lads, who are awaiting results.🀞

Excellent news Ady, that reminds me I must take a walk to my surgery to enquire about the results of the test I did over a week ago. They never seem to bother if I don't chase!

User
Posted 01 Nov 2024 at 19:23

Great news Adrian, enjoy your beer 🍺 

User
Posted 01 Nov 2024 at 20:47

Good news fella, it's been over 2 years for me undetectable following RP.

Interesting to read in you original post about that cancer monster lurking somewhere in the background. I would guess many of us feel the same, me included.

 
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