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PSMA scan for PSA of 0.023?

User
Posted 12 Aug 2019 at 22:42

Thanks, everyone, for your best wishes

Chris - I hope your cruise is brilliant 

Kayaker Bill - I’ll keep everyone informed on how things go, post-bicalutimide - I’ve had nearly every side effect of the treatment and desperately hope to see an improvement in quality of life once I stop it

User
Posted 24 Aug 2019 at 14:27

To confirm, my oncologist did stop my bicalutimide treatment at our consultation this week.  I was on it for 18 months.  I'm now hoping that excess weight will drop off and that I'll have a bit more energy.

My PSA is <0.006.  She did say it would be ideal if it stayed there but, that even if it did rise, it may settle at a new normal and therefore need no further intervention.  If, God forbid, it goes to around 1.3, that'll be the time to re-scan.

I'm being referred to discuss a penile implant, but that's a story for another day.  If i go ahead, I'll keep the forum up to date.

Ulsterman

 

User
Posted 24 Aug 2019 at 15:20
Best of luck with it all mate. You’ve been through the lot , belt and braces !!
User
Posted 25 Aug 2019 at 13:56

All the best Ulsterman. Enjoy being off treatment.

Ido4

User
Posted 25 Aug 2019 at 14:35
Great news.. You've certainly had a tough ride. Fingers crossed all settles down for you now and the other matter is a success.

Ray

User
Posted 25 Aug 2019 at 14:45
Hmm, penile implant?

Doubt if they would do one for my new size on the NHS, perhaps I will have to go bespoke - made to measure on Savile Row - if they have a children’s tailor...

Maybe you can pay a backhander for ‘enhancements’?

Best of luck as ever.

Cheers, John.

User
Posted 17 Feb 2020 at 15:00

Ulsterman

 

i had RP on November 2017 at age of 47 with (psa 5.8 prior treatment), Gleason score 6 stage T2b, No seminal vesicle invasion, no lymph note invasion but with +ve surgical margins. Two months after RP, my psa score was 0.01.

Two years later, my psa has risen to 0.161 and I am now considering PSMA PET SCAN, just to mention that most articles around this scan including my GP,  recommend having this test on psa +0.2 (Good to know that your scan detected cancerous cells at just 0.023).

Being in the same boat as you, I would like to know your current situation. Is your psa stable now?

Panos

User
Posted 17 Feb 2020 at 17:00

Everyone was surprised when my psma scan actually showed something.  Other men with higher psa who have had a psma scan have shown nothing.  I’ve certainly no regrets.  Just had my latest blood test today and get results on Wednesday at my next oncology appointment.  But the last two have been <0.006 - the lowest our machine measures to.  What does your oncologist say?

User
Posted 17 Feb 2020 at 17:01
To be fair panos, your numbers are acting entirely in line with a recurrence in the prostate bed and there is undoubtedly a problem so successful PSMA scan or not, you are likely to benefit from salvage RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Feb 2020 at 08:33

Ulsterman

yes thats what most oncologists advice, to have a psma pet ct at psa>+0.2, and that is what one of my oncologists have advised. The other one opts for a ct scan and treatment at psa<0.2 (which is what im going to do).  

hope you have same results.

 

 

 

 

User
Posted 21 Feb 2020 at 10:28

6 months post treatment and still <0.006.  Early days, but I’m very happy.

Ulsterman

User
Posted 21 Feb 2020 at 15:29

Excellent news Ulsterman. Best wishes.

Ido4

User
Posted 21 Feb 2020 at 16:37
Great news for you and us all !!
User
Posted 22 May 2020 at 17:26

Three more months have passed and my latest PSA is <0.006.  Great news.

I asked my oncologist if I was in remission.  I was told that remission is one of two things - we know there are cancer cells there, they’re doing nothing at the moment so we don’t need to treat now, but we will do in the future - or, we strongly suspect there are cancer cells there but can’t detect them at the moment but do believe you’ll need future treatment.

He told me I was either in remission but there was a good chance of a ‘cure’ but made it very clear they wouldn’t consider using that word for ten years.  He told me that after everything I’d been through, I was in the best possible place.  I tend to agree.  My urologist and oncologist have done miraculously well so far.

One other piece of news - I’ve been approved for the penile implant.  Waiting list times will have changed because of Covid 19, but at least I’m approved.  My local hospital doesn’t do the operation, I’ll be off to UCLH, which I’m very happy about.

Ulsterman

User
Posted 22 May 2020 at 17:33

Excellent news .The luck of the Irish!

KInd Regards

Norm

User
Posted 22 May 2020 at 17:57
Fabulous
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 May 2020 at 18:52

Great news , as regards the last paragraph, I will keep my legs tightly crossed. 

Hope things continue to go well.

Thanks Chris.

 

User
Posted 22 May 2020 at 19:45
I’m so chuffed for you mate truly. You’ve faced it all big-style , and if you get robo-dick as well all hell’s gonna break loose. Best wishes
User
Posted 22 May 2020 at 21:52
Great news have fun with your new dick!
User
Posted 22 May 2020 at 23:31

I’m far too lady like to refer to the comments on your penile implant 😉😉I’ve read your post to David and he’s delighted for you. He’s also G9 Tb3 and his last PSA was 0.1 though he had different treatments, nevertheless it’s such good news. Given a real boost to David... we’ve shared a bottle of red to celebrate. He is just waiting for the results of his bone scan. Have a good weekend.

 

Leila 

User
Posted 23 May 2020 at 01:18
Going well. Hope the implant serves yo well!
Barry
User
Posted 23 May 2020 at 12:05

Great PSA result Ulsterman. Hope the implant does a good job!

 

Ido4

User
Posted 26 May 2020 at 08:51

Absolutely delighted to see your latest post Ulsterman. Fantastic news!😀

My husband is starting his salvage radiotherapy treatment tomorrow, feeling very apprehensive at the minute. 

I pray that he also gets a good outcome after all this.

Take good care and keep updated. 

User
Posted 26 May 2020 at 11:00

Stacey - so sorry to see that your husband has to have salvage radiotherapy.  I felt cheated having to have it in my late 40s and he is so much younger than me.  I wish him well.  

User
Posted 11 Aug 2020 at 20:13

Good evening, friends.  More good news from the hospital.  My latest PSA result remains undetectable at < 0.006.  I completed salvage radiotherapy two years ago and bicalutimide a year ago.  This is therefore very encouraging.  Thank you all for your support and love

User
Posted 11 Aug 2020 at 20:26

That is fantastic news Ulsterman, congratulations!! 🎉

User
Posted 11 Aug 2020 at 20:39
👍 Excellent. Hope you've kicked it into touch

Cheers

Bill

User
Posted 11 Aug 2020 at 20:57
Great result bud !!
User
Posted 11 Aug 2020 at 21:20
Well done Ulsterman!
User
Posted 11 Aug 2020 at 21:48

 Brilliant  news, so pleased for you.

Leila

User
Posted 11 Aug 2020 at 21:52

Brilliant Ulsterman!

User
Posted 11 Aug 2020 at 22:22

Great news.

User
Posted 11 Aug 2020 at 22:25

Great to hear positive news, really happy for you.

Ange

User
Posted 11 Aug 2020 at 22:43

Great news, Ulsterman.

May they continue that way for a long, long time. 

All the best, 

Steve 

User
Posted 11 Aug 2020 at 23:40

Ulsterman

Great news , are you feeling healthy ?

Thanks Chris

User
Posted 12 Aug 2020 at 07:29

I am feeling healthy and not as tired as I was, but that might be because of not working as much during lockdown

User
Posted 12 Aug 2020 at 08:48

That’s great news Ulsterman. Very encouraging.

 

Ido4

User
Posted 12 Aug 2020 at 09:40

Great news!

 

User
Posted 12 Aug 2020 at 11:13

Hi, I know it’s easy for me to say, being retired, but try to think of yourself when you do go back to work and don’t push yourself too hard too soon x

User
Posted 12 Aug 2020 at 15:53
So encouraging news for other's too.
Barry
User
Posted 12 Aug 2020 at 18:42

Originally Posted by: Online Community Member

Hi, I know it’s easy for me to say, being retired, but try to think of yourself when you do go back to work and don’t push yourself too hard too soon x

 

 

If only - the DfE will make sure that Ulsterman is tested to the limit and gets no rest or peace for the next few months. 

 

Great result, by the way 👍

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

User
Posted 13 Aug 2020 at 06:54

I’ll be busy today Lyn - A level results day and let’s just say I really don’t like the government algorithm 

User
Posted 13 Aug 2020 at 13:28
I have been providing supervision to distressed / livid HTs all week :-/

Actually, that could be said of the last 5 months!

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

User
Posted 09 Sep 2020 at 19:06

Originally Posted by: Online Community Member

For anyone interested, this is the report on FACBC which has had great results in Italy and is now being trialled at a small number of hospitals in England (but again, with very narrow criteria)

http://www.europeanurology.com/article/S0302-2838(13)00905-6/fulltext/the-new-promise-of-facbc-position-emission-tomography-computed-tomography-in-the-localization-of-disease-relapse-after-radical-treatment-for-prostate-cancer-are-we-turning-to-the-right-radiotracer


*************************************************************************************************************************************

 

I accidentally came across this post and decided to have a look, only to find that they charge $35.95 for 24 hours access to this document!!! How ridiculous. Think I'll give it a miss...

User
Posted 10 Sep 2020 at 10:48

Yes strange that Lyn would share it knowing there is an associated cost. 
Lyn could you give us the take home message maybe

UM great results. Keep kicking it’s butt 

Bri 

User
Posted 10 Sep 2020 at 16:52

Originally Posted by: Online Community Member

Bear in mind that CJ has had fancy scans at a much higher PSA than yours without any success. Having said that, if I thought I could get J an FACBC I would pay.

I posted this in January 2017 on another thread

************************************************************************************************************************************

Posted Sunday, January 22, 2017 11:56:42 PM
It isn't a straightforward issue though, is it ChrisJ, and presumably the reason you are unlikely to be referred is that it is still in trial stage. Like John with the FACBC tracer, it seems you might not meet the narrow trial criteria :-(

 

This is a useful perspective from 'those that know'

http://www.birminghamprostateclinic.co.uk/prostate/assessments/pet-scans-for-prostate-cancer/

 

For anyone interested, this is the report on FACBC which has had great results in Italy and is now being trialled at a small number of hospitals in England (but again, with very narrow criteria)

http://www.europeanurology.com/article/S0302-2838(13)00905-6/fulltext/the-new-promise-of-facbc-position-emission-tomography-computed-tomography-in-the-localization-of-disease-relapse-after-radical-treatment-for-prostate-cancer-are-we-turning-to-the-right-radiotracer


*************************************************************************************************************************************

 

 

 

Please see above - I originally posted it in January 2017 when the UK arm of the trial was in its early stages and the article wasn't behind a pay wall :-/  When I quoted my own post in 2018, it still wasn't behind a pay wall - perhaps non subscribers have to pay for old papers once they are out of date?

The take home message was that FACBC (now referred to as Axumin) performed well at very low PSA levels to identify site of biochemical recurrence - not quite as well as Ga68 but cheaper to make and more stable.  

 

 

Edited by member 10 Sep 2020 at 16:55  | Reason: Not specified

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

User
Posted 26 Oct 2020 at 10:46

I’ve been reflecting this morning.  It was in late October 2016 that I became a member of this forum.  So, I’ve been with you lot for 4 years now.  Where has the time gone?  Happily, my cancer is in remission or may even be gone.  My son is now at university, although his hall of residence has just been put on lockdown.  Just back from a weekend to Grimsby where my daughter is on placement at a local hospital training to be a doctor (she checked first, I was allowed to visit).

 

so, 4 years on, things are fine.  Thank you all for sharing your knowledge, your love and care.  I would not have wanted to make this Cancer journey without this forum or without the PCUK specialist nurses.

User
Posted 26 Oct 2020 at 15:02

Lovely post Ulsterman. Long may you stay well.

Ido4

User
Posted 26 Oct 2020 at 15:43

Best wishes to you 🌹

User
Posted 26 Oct 2020 at 16:26
Great news bud !
 
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