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Post RP and SRT journey - July 3023 PSA test update

User
Posted 09 Jul 2021 at 18:49

Same here. I opened a Corona import. Hope you have a more relaxed weekend. 🍻🍹😎

User
Posted 09 Jul 2021 at 18:59

And you mate take care  were of to weymouth sun for a few days first trip out since i was diagnosed just over a year ago so ready for relaxing break 

User
Posted 09 Jul 2021 at 19:43

Originally Posted by: Online Community Member

Pete 

I am sure the girls will accommodate your wishes. Hope it is all good. 

Thanks Chris

 

I may include an order for a curry and loads of beer in that case :)

It'll be fine whatever the outcome.

User
Posted 09 Jul 2021 at 19:44

Originally Posted by: Online Community Member

Hi pete 

    Im Bob ive just had first blood results after prostaectomy came back at 0.023 ug/L i think thats quite good uf anybody can put me right im sure you will get the right results but I'm like you a worrier take care 

Bob

 

Cheers Bob

That score is something to bank. With that luck, you need to put money on England this weekend :)

User
Posted 09 Jul 2021 at 19:57

Hope the result is good. Waiting on the result is difficult.

Ido4

User
Posted 09 Jul 2021 at 20:03

Originally Posted by: Online Community Member

Hope the result is good. Waiting on the result is difficult.

 

Especially if you are a bug wuss like me :)

User
Posted 13 Jul 2021 at 12:37
Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

August 2020: 0.06

Jan 2021: 0.07

July 2021: <0.03 undetectable at new ultrasensitive assay - tests six monthly by default

Thanks for all the good thoughts sent my way. You are all awesome.

User
Posted 13 Jul 2021 at 13:23

Excellent result Pete

Dave

User
Posted 13 Jul 2021 at 13:26

Pete  

Great news. I am a fan of the two decimal point results, it has signposted my journey all the way.

Have a beer and relax.

Thanks Chris

User
Posted 13 Jul 2021 at 13:34

Originally Posted by: Online Community Member

Pete  

Great news. I am a fan of the two decimal point results, it has signposted my journey all the way.

Have a beer and relax.

Thanks Chris

 

Many beers and relax.(fixed that for you πŸ˜€)

 

Cheers

User
Posted 13 Jul 2021 at 16:00

That is fantastic. Great news.

Ido4

User
Posted 13 Jul 2021 at 18:22

Can't ask for better than that Pete πŸ‘

Cheers

Bill

Edited by member 13 Jul 2021 at 18:33  | Reason: Not specified

User
Posted 13 Jul 2021 at 20:38

Tried posting earlier but for some reason it wouldn’t post. Anyway I was saying it was great to hear about your result and that with my only slight increase today I was going to join you in a couple of beers. 

Well I’ve had those beers and wish you continued low PSA results 

All the best

Bri 

User
Posted 13 Jul 2021 at 22:00
Cheers chaps

Earl;y start tomorrow so no beers but they are lined up for the weekend :)

User
Posted 13 Jul 2021 at 22:12

Yay - great result!

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

User
Posted 14 Jul 2021 at 12:34

Hi Pete,

Great numbers long may it continue.

Good luck John.

User
Posted 15 Jul 2021 at 10:21
Thanks folks.
User
Posted 24 Jul 2021 at 10:29

Fantastic. Long may it continue. πŸ™‚πŸ‘

User
Posted 10 Aug 2021 at 16:57

Hi Pete.

I have my first PSA test after the RP on Friday 13th August. RP was 6 weeks ago, Gleason score 4+3.

I have had some post operative complications with infections, surgery was not able to be nerve sparing, lymph nodes taken out etc. Still have catheter inπŸ€ͺ

I have posted conversation about adjutant v salvage RT but still with moderators.

I have meeting with the consultant on Monday 16th - any advice or information would be much appreciated.

Best regards

Mike G

 

 

 

User
Posted 12 Aug 2021 at 16:20

Hi Proper Job

Thanks for asking for my advice.

Couple of questions:

- What was your PSA profile leading up to the RP?

- Did you get given a pathology report and was there anything of note on it?

Sorry to hear they had to go in aggressively - it is kind of a "better we do this than risk issues down the line" and will have been based on your PSA, your pre-op biopsies and scans and would have been discussed in the Multi-Disciplinary team to agree the approach for the best outcome.

At this point, I would suggest worries about adjuvant / salvage may be premature. My advice is to let it play out and let your journey be guided by the results and the medical advice, not your worries. Of course, I am the worlds biggest hypocrite as you will have seen from my post history as I spent way too much time in my head worrying about what might happen. I was all "worst case" and in the end, had a good result post SRT. What this means is that your head game is crucial. It is easy to over research and get worried about obscure stuff. Stick to the basics, use the forum to improve your understanding and if things get sticky, find a counsellor to help get your head straight. It is what I did, and it worked. This may be controversial here, but monitor what load you put on your other half. I was a bit too worried and negative and it had an impact on my wife that I regret.

If you are still on a catheter, make sure to empty it regularly and for the overnight one put it in a bucket or bowl next to the bed. I assume you have an extension tube. Don't worry about the process of removing it - they joy of losing it far outweighs any discomfort.

If you are still on meds and have DVT stockings, make sure you are rigorous on their use.

As you have had lymph nodes removed, keep an eye out for lymphodema around your nether regions and upper legs. If it gets bad, raise it with your McMillan (or similar) nurse.

On the nurse front, these people are angels. They are very supportive, even if you just want to ring up for advice and to let of steam. Don't be afraid to call them.

Your regular PSA tests may be a source of anxiety. I find the best approach is to accept that anxiety and just press on. As you get through more of them, it gets easier. If things to change, the best perspective is "knowledge is power" and gives you treatment options.

That is about it, other than to note the folks here are fantastic and always ready to give advice.

Good luck!

Pete

User
Posted 15 Aug 2021 at 23:00

Hi Pete,

Many thanks for very detailed and considered comments.

Also for the good advice. Like you I try to go with things and not over think it ... whilst being aware of and not ignoring the situation.

I also sometimes find it difficult to follow my own advice and every test, meeting, event is like a ticking bomb! I am mostly able to put it in its box and keep the lid on, so not all bad.

My PSA was only 6.5 I think but the Gleason score was 4+3 and the tumour was very near the margins.

So tomorrow should answer some questions at least ... Although everything seems to always be a waiting game! This loss of control over myself is hard.

Thanks again for wise words and for taking the time.

I think a glass of red wine or two tomorrow, what ever πŸ™‚

Regards

MikeG

 

 

User
Posted 17 Aug 2021 at 21:29

Hi Pete,

Quick follow up ... Good news.

Against the odds PSA is undetectable! Even though histology etc confirmed Gleason score 4+ 4 not 4+3 and that the tumor had breached the prostate!!

On the down side my wife has tested positive for Covid and I have had to have test ... waiting for results. Also had to to cancel tomorrow's scan to see if I can have catheter removed!! So probably another 2/3 weeks!!!

I stay with the positive news.

Best regards

Mike

User
Posted 18 Aug 2021 at 09:29
Brilliant news.

The thing now is to look forward. Try to bracket the PSA tests as much as possible and concentrate on the rest of your life.

Focus on recovery, rehab and having fun!

Bugger about the catheter. I promise you that moment of removal will be worth the wait!

Sorry to hear your missus has covid. I assume you are jabbed?

Pete

User
Posted 18 Aug 2021 at 11:31

Thanks Pete.

Yes all fully vaccinated and as you say it's a bugger about the catheter ... But can put up with that.

Take care 

Mike

 

 

 

 

User
Posted 12 Jan 2022 at 16:00
Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

August 2020: 0.06

Jan 2021: 0.07

July 2021: <0.03

Jan 2022: <0.03

I'll take that!

User
Posted 12 Jan 2022 at 16:11

Tremendous. Great news. I’ve been trying to pm you since December and again today. Inbox is full!

Ido4

User
Posted 12 Jan 2022 at 16:45

Pete , excellent news, really pleased for you.

Thanks Chris

User
Posted 12 Jan 2022 at 17:08

It is for both of us!

I only just spotted your results update - well done!

I have cleared out my inbox - it was rather full :)

Try again to test it!

User
Posted 12 Jan 2022 at 19:55

Just tried. It’s still saying full. Mine is at 3%.😎

Ido4

User
Posted 12 Jan 2022 at 20:06

Hmmm...

 

It said it was empty. I have deleted the archives and sent - can you try again?

User
Posted 12 Jan 2022 at 21:19

Originally Posted by: Online Community Member

Hmmm...

 

It said it was empty. I have deleted the archives and sent - can you try again?

I found that if you had 100 messages the mail box is full, even it the percentage was low. 

Thanks Chris

 

User
Posted 12 Jan 2022 at 22:28

Success!

Ido4

User
Posted 16 Jan 2022 at 15:21

no apology needed here mate.

It seems important we acknowledge what is hard properly. 

I know i have had a bit a mood crash pst surgery - to be expected of course but still hard going..

Dave

User
Posted 26 Jul 2022 at 11:34
Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

August 2020: 0.06

Jan 2021: 0.07

July 2021: <0.03

Jan 2022: <0.03

July 2022: <0.03

I'll take that!

User
Posted 26 Jul 2022 at 11:48

Fabulous result. Very pleased for you PP. 

Ido4

User
Posted 26 Jul 2022 at 12:08
Brilliant πŸ‘ πŸ‘ πŸ‘
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jul 2022 at 13:07
Cheers folks!

I'm probably going to be handed back to the GP after the next one. Not sure when if ever I will go to annual tests?

User
Posted 26 Jul 2022 at 13:17

Pete , great news, really pleased to hear it is going well.

Thanks Chris 

User
Posted 26 Jul 2022 at 13:27

As good as it getsπŸ‘long may it continue

Cheers 

Bill

User
Posted 26 Jul 2022 at 17:44

Originally Posted by: Online Community Member
Cheers folks!

I'm probably going to be handed back to the GP after the next one. Not sure when if ever I will go to annual tests?

As you have used all your options for a cure maybe consider every 2 years... 

I am seriously thinking about never having a PSA test again...

User
Posted 26 Jul 2022 at 23:45

Great news

User
Posted 28 Jul 2022 at 20:34
πŸ‘πŸ‘πŸ‘πŸ‘great result mate

Take care

Bri

User
Posted 28 Jul 2022 at 21:43

Great news πŸ‘

User
Posted 24 Jan 2023 at 14:15
Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

August 2020: 0.06

Jan 2021: 0.07

July 2021: <0.03

Jan 2022: <0.03

July 2022: <0.03

Jan 2023: <0.03

After next test in August I go to yearly tests under the GP.

I also have a job now.

User
Posted 24 Jan 2023 at 14:42
Great news Pete...
User
Posted 24 Jan 2023 at 14:44
Great news Pete...

You still on the low dose aspirin??

User
Posted 24 Jan 2023 at 15:24
Love this Pete !! Keep on soldiering. You’ve battled your way out of it and summer looming πŸ‘
User
Posted 24 Jan 2023 at 16:05

Brilliant news Pete πŸ‘

User
Posted 24 Jan 2023 at 16:15
Fantastic news Pete!
User
Posted 24 Jan 2023 at 16:30

Fantastic news Pete πŸ‘

 
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