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User
Posted 10 Jan 2019 at 14:53

Hi everyone:

Quick recap;

Gleason 3+4 (anterior) misdiagnosed a year ago with prostatitis - ok thats harsh - they couldnt find the lesion as it was in the anterior of the prostate near the edge

T3 (no seminal vesicles N0 M0 no perineurial)

HT/RT treatment

HT prostap for a year

Psa prior to Radiotherapy <0.1 Radiotherapy for 7 weeks (due to bowel complications in the passed he has bowel cancer but cured of that over 13 years ago) 

1st PSA test following radiotherapy this week.

Results in today <0.1!

I know we have miles and miles to go and months and years of anxiety and ups and downs as we ride the prostate cancer rollercoaster ahead of us but the first score is really good and boy did we have "psa anxiety this week! Dry January may be broken tonight.....!

Just thought you would like to know

 

Jenny and Allan x

User
Posted 10 Jan 2019 at 22:21

Oh my God, I thought dry January meant only dry white wine, dry gin, dry martini....

User
Posted 22 May 2019 at 22:28
Great news :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jan 2019 at 14:53

Hi everyone:

Quick recap;

Gleason 3+4 (anterior) misdiagnosed a year ago with prostatitis - ok thats harsh - they couldnt find the lesion as it was in the anterior of the prostate near the edge

T3 (no seminal vesicles N0 M0 no perineurial)

HT/RT treatment

HT prostap for a year

Psa prior to Radiotherapy <0.1 Radiotherapy for 7 weeks (due to bowel complications in the passed he has bowel cancer but cured of that over 13 years ago) 

1st PSA test following radiotherapy this week.

Results in today <0.1!

I know we have miles and miles to go and months and years of anxiety and ups and downs as we ride the prostate cancer rollercoaster ahead of us but the first score is really good and boy did we have "psa anxiety this week! Dry January may be broken tonight.....!

Just thought you would like to know

 

Jenny and Allan x

User
Posted 10 Jan 2019 at 18:00
That’s wonderful news. Thanks for posting this as I have a similar diagnosis and will be having RT March/April and although I am already positive about my result this has helped to strengthen my thoughts

Bob

User
Posted 10 Jan 2019 at 18:18

Great News, Jenny & Allan!!!

All the Best,

Steve 

User
Posted 10 Jan 2019 at 18:20
FANTASTIC. What’s dry January? Just because it’s been clement ? :-))
User
Posted 10 Jan 2019 at 18:29

Originally Posted by: Online Community Member
FANTASTIC. What’s dry January? Just because it’s been clement ? :-))

It means "not drinking alcohol", Chris smile .

Cheers,

Chris

 

User
Posted 10 Jan 2019 at 20:50

Great news. Thanks for sharing.

Ido4

User
Posted 10 Jan 2019 at 20:52

I am also on a ”dry January”

I was getting far too used to enjoying a bothle of red every night so having a bit of a reset 

User
Posted 10 Jan 2019 at 22:22
🤣🤣🤣🤣🤣🤣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jan 2019 at 09:34

Thank you, your post gives us hope. So pleased for you both! well done.

User
Posted 11 Jan 2019 at 09:37

Thank you.
My head says we well and truly broke dry January!
I know we have a long way to go and there may be both good and bad days to come but we have learnt to absolutely take and enjoy the good days!
All the best
Jenny and Allan
x

Edited by member 11 Jan 2019 at 09:39  | Reason: atrocious spelling

User
Posted 17 May 2019 at 14:47
No.

Why don’t they speak English?

Cheers, John.

User
Posted 23 May 2019 at 15:26

Good news overall. You are right to get and and enjoy life.

Best wishes,

Ido4

User
Posted 01 Mar 2022 at 19:33

Brilliant news 👍🏽 Great results, long may this continue 

User
Posted 01 Mar 2022 at 21:51

What great news, it’s posts like this that are keeping me going xx

User
Posted 01 Mar 2022 at 22:49
Great update Jenny 🎉👏
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Mar 2022 at 23:04

Excellent. Anything under 2.2 would be considered acceptable, so 0.2 is excellent. Bet that UTI caused a panic a few years ago.

Dave

User
Posted 02 Mar 2022 at 17:13

Great news Jenny. Nice to hear from you.

Ido4

User
Posted 20 Sep 2022 at 12:22

Scores on the doors;

0.3 small increase from 0.2 almost 4 years since end of radiotherapy. They aren't too worried however repeat bloods in 4 months to err on the side of caution. Psa has jumped about a bit in this journey so I thought it would be useful to list the results in case anyone else finds it useful (no psa journey is the same!).

Background: T2c/3a Gleason 3+4 psa 16. Hormones for a year and Radiotherapy (7 weeks) finished November 2018.

 

So since radiotherapy finished end of 2018 the results have been 0.2 0.2 0.4 1.0 (uti), 0.4, 0.2 0.2 0.2 0.2 and today 0.3

We haven't got that panicky feeling in the pit of our stomachs yet that we are all used to so that bodes well!

Thinking of you all.

 

Jenny x

User
Posted 20 Sep 2022 at 12:47
Excellent result!

Best wishes,

Chris

User
Posted 20 Sep 2022 at 14:32

Great results Jenny.  We all keep our fingers crossed following on from that first ‘undetectable’ result and just pray going forward!

Ange x

Show Most Thanked Posts
User
Posted 10 Jan 2019 at 18:00
That’s wonderful news. Thanks for posting this as I have a similar diagnosis and will be having RT March/April and although I am already positive about my result this has helped to strengthen my thoughts

Bob

User
Posted 10 Jan 2019 at 18:18

Great News, Jenny & Allan!!!

All the Best,

Steve 

User
Posted 10 Jan 2019 at 18:20
FANTASTIC. What’s dry January? Just because it’s been clement ? :-))
User
Posted 10 Jan 2019 at 18:29

Originally Posted by: Online Community Member
FANTASTIC. What’s dry January? Just because it’s been clement ? :-))

It means "not drinking alcohol", Chris smile .

Cheers,

Chris

 

User
Posted 10 Jan 2019 at 20:00

Lol!!!

 

User
Posted 10 Jan 2019 at 20:14
Why would Anyone want to do that ??

;-))

User
Posted 10 Jan 2019 at 20:50

Great news. Thanks for sharing.

Ido4

User
Posted 10 Jan 2019 at 20:52

I am also on a ”dry January”

I was getting far too used to enjoying a bothle of red every night so having a bit of a reset 

User
Posted 10 Jan 2019 at 22:21

Oh my God, I thought dry January meant only dry white wine, dry gin, dry martini....

User
Posted 10 Jan 2019 at 22:22
🤣🤣🤣🤣🤣🤣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jan 2019 at 06:49

🧐😂

User
Posted 11 Jan 2019 at 09:34

Thank you, your post gives us hope. So pleased for you both! well done.

User
Posted 11 Jan 2019 at 09:37

Thank you.
My head says we well and truly broke dry January!
I know we have a long way to go and there may be both good and bad days to come but we have learnt to absolutely take and enjoy the good days!
All the best
Jenny and Allan
x

Edited by member 11 Jan 2019 at 09:39  | Reason: atrocious spelling

User
Posted 16 May 2019 at 14:58

Hi ; results are in.

psa 16

gleason 3+4

mostly 3

t2c/3a no seminal vesicles or node involvement 

 4 months since last Psa (which was <0.1 ) today’s results were 0.2 we had a bit of a wobble as it has gone up. He finished radiotherapy November 2018 and not on any HT any reassurance gratefully received but I think 0.2 is a good result?

thanks for reading  

 

 

 

User
Posted 16 May 2019 at 19:30
Stay calm. The PSA jumps about a bit after RT - some oncos refuse to have PSA tests done so soon after the treatment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 May 2019 at 20:02

Thanks Lyn, it’s been 6 months since 1st Psa At 8 weeks post radiotherapy was<0.1 so we naively thought it would stay that low.

do you think that the fact his testosterone is coming back has something to do with it?

so am guessing we haven’t reached a nadir yet?

 

 

 

x

 

User
Posted 16 May 2019 at 20:05
The nadir typically occurs 18 months after treatment, so you’ve a long way to go yet.

Cheers,

Chris

User
Posted 16 May 2019 at 20:20

Thanks Chris! X

User
Posted 16 May 2019 at 21:16

Originally Posted by: Online Community Member

Thanks Lyn, it’s been 6 months since 1st Psa At 8 weeks post radiotherapy was<0.1 so we naively thought it would stay that low.

do you think that the fact his testosterone is coming back has something to do with it?

so am guessing we haven’t reached a nadir yet?

It could be to do with testosterone but also, he still has a prostate which will have healthy prostate cells producing healthy PSA. As long as it stays under 2.0 you are on to a winner!  

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

User
Posted 16 May 2019 at 21:46

👍🏻 Thanks for replying Lyn x

User
Posted 17 May 2019 at 12:28
just a quick query - we got the hard copy of his results and at the bottom it says "Pathology Harmonisation reference intervals adopted as of 20/6/18.

Does anyone know what that means?

thanks as ever

User
Posted 17 May 2019 at 14:47
No.

Why don’t they speak English?

Cheers, John.

User
Posted 17 May 2019 at 15:08
LOL John!

Yup we wondered if this could have made a difference with the rise from 0.1 to 0.2 after radiotherapy which has spooked us somewhat!

all the best!

jen

User
Posted 17 May 2019 at 15:31

A quick google suggests that this is harmonisation of the "normal" low and high levels for all the components of blood, urine, and other tests, and thus flagging of out-of-range results should be comparing against the same "normal" ranges everywhere.

I don't think this will change the calculation of the PSA, but it might mean everyone uses the same PSA ranges to flag up high levels that need investigating in the case of tests taken prior to any treatment.

It's probably irrelevant for PSA measurements taken after treatment starts, but just a bit of boiler plate text that appears on all test results.

User
Posted 17 May 2019 at 15:33
Thanks Andy that's really helpful!

Cheers

Jen

User
Posted 22 May 2019 at 16:23

Hi Everyone;

Just a quick update.

Saw the Oncologist today who was perfectly happy with 0.2 (even though there had been a small increase from <0.1)and was indeed unusually smiley.... !We are back again in September and we will watch the trend but she thinks 0.2 may be his level as he had been that level in January 2018. She touched on the potential bounce (we are 6 months after Radiotherapy and on no HT) at about 18 months. Other than that it was the quickest appointment we had yet.(we forgot to ask her any of our list of questions!) Flushes are subsiding but again she thinks they may (or may not) get fewer and fewer round about the 18 month mark.

So we will get on with living life until September and the next psa anxiety week!

Thanks for reading

Jen

User
Posted 22 May 2019 at 22:28
Great news :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 May 2019 at 15:26

Good news overall. You are right to get and and enjoy life.

Best wishes,

Ido4

User
Posted 01 Mar 2022 at 15:29

Haven't been on here for a couple of years but you are never far from our thoughts.

I know good news is always received well so here it is. Results Today - after a 3 hour delay in getting the phone call (nerves are shredded!) we found out he is sitting at 0.2 again which is great!

 

T2c/3a Gleason 3+4 psa 16. Hormones for a year and Radiotherapy (7 weeks)

 So since radiotherapy finished end of 2018 the results have been 0.2 0.2 0.4 1.0 (uti), 0.4, 0.2 0.2 0.2 0.2

The Nurse stated if all goes well in 6 months Allan will be discharged back to primary care for yearly psa's.

Thinking of you all.

Jenny x

User
Posted 01 Mar 2022 at 19:33

Brilliant news 👍🏽 Great results, long may this continue 

User
Posted 01 Mar 2022 at 21:51

What great news, it’s posts like this that are keeping me going xx

User
Posted 01 Mar 2022 at 22:49
Great update Jenny 🎉👏
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Mar 2022 at 23:04

Excellent. Anything under 2.2 would be considered acceptable, so 0.2 is excellent. Bet that UTI caused a panic a few years ago.

Dave

User
Posted 02 Mar 2022 at 17:13

Great news Jenny. Nice to hear from you.

Ido4

User
Posted 03 Mar 2022 at 10:01

Thank you guys and gals!

Dave re/ the UTI - I was like Corporal Jones in Dads Army shouting "dont' panic!"

x

Edited by member 03 Mar 2022 at 10:04  | Reason: Not specified

User
Posted 20 Sep 2022 at 12:22

Scores on the doors;

0.3 small increase from 0.2 almost 4 years since end of radiotherapy. They aren't too worried however repeat bloods in 4 months to err on the side of caution. Psa has jumped about a bit in this journey so I thought it would be useful to list the results in case anyone else finds it useful (no psa journey is the same!).

Background: T2c/3a Gleason 3+4 psa 16. Hormones for a year and Radiotherapy (7 weeks) finished November 2018.

 

So since radiotherapy finished end of 2018 the results have been 0.2 0.2 0.4 1.0 (uti), 0.4, 0.2 0.2 0.2 0.2 and today 0.3

We haven't got that panicky feeling in the pit of our stomachs yet that we are all used to so that bodes well!

Thinking of you all.

 

Jenny x

User
Posted 20 Sep 2022 at 12:47
Excellent result!

Best wishes,

Chris

User
Posted 20 Sep 2022 at 13:43
Great news Jenny
User
Posted 20 Sep 2022 at 14:32

Great results Jenny.  We all keep our fingers crossed following on from that first ‘undetectable’ result and just pray going forward!

Ange x

User
Posted 20 Sep 2022 at 14:47

That's fantastic jenny  😁

User
Posted 20 Sep 2022 at 18:36
Good results Jenny

User
Posted 20 Sep 2022 at 18:42

That all looks very good. 

Dave

 
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