I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

5 years and PSA <0.1

Email this conversation Print this conversation
User
Posted 27 Apr 2020 at 12:21

I have finally taken the plunge and swapped to standard PSA testing. Bollinge thankyou for the inspiration for doing that and Covid19 for providing the opportunity (All routine appointments at my hospital cancelled).

I decided after 5 years of advocacy for supersensitive testing that the standard one will do now as I will not consider further treatment unless my PSA goes over 0.1 anyway. So why worry about 3 decimal places??

Anyway GP just rang and told me it's a "less than" so no PSA anxiety for a year 😀.

Keep fighting and keep contributing guys and gals.

User
Posted 27 Apr 2020 at 16:22

J

Great news and good to hear a reassuring positive story about surgery. Hope it continues for a very long time. 

Thanks Chris.

User
Posted 27 Apr 2020 at 16:50

That's great news.   

But a point for debate.  It's possible to imagine becoming less concerned as time goes on.   

It's a dare.  Could I put up with not knowing it was 0.09 and then finding out it's 0.16 with no history and tests 12 months apart.  I'd want to go onto more frequent tests if it went up to 0.09 or even 0.06.  It's <0.05.

All the best, Peter

User
Posted 27 Apr 2020 at 18:58
Fantastic news Francij
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Apr 2020 at 07:47
Good news!

As I have said before, I asked two oncologists (one the top PCa doctor at the Royal Marsden) and my own surgeon about ‘super-sensitive assay”, i.e. PSA testing to lower than 0.1, and they all concurred that it’s more trouble than it’s worth except in a few rare cases.

My own hospital only tests to 0.1 anyway, so <0.1, ‘undetectable’ is a result.

Chill out for another year, that’s if you can in the middle of the plague pandemic.😷😷😷

Best of luck.

Cheers, John.

User
Posted 28 Apr 2020 at 10:23

Great news Francij1.

 

Ido4

User
Posted 28 Apr 2020 at 13:16
Great news
User
Posted 24 Aug 2021 at 14:17

I think you mean <0.1 rather than >0.1

My worry would be that the specialist is keen to try a new toy (SABR) - at 6 years post-op with a doubling time of 2 years, even if it does turn out that you have a biochemical recurrence, your PSA is behaving like a classic 'cells left behind in the prostate bed'. Was there anything in your post-op pathology to suggest lymph node involvement???? The longer you go post-op before seeing PSA rise, and the slower the rate of rise, the lower the risk, generally. If you were 6 months post-op and your doubling time was 6 weeks, you would be in the tihs.

John waited until the PSA reached 0.12 before agreeing to a referral to oncology and by the time the appointment came through & RT/HT was agreed, it was 0.16. That was almost 2.5 years post-op and here he still is, bobbing along at 0.1 nearly 9 years later.

Edited by member 24 Aug 2021 at 18:52  | Reason: Not specified

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

User
Posted 24 Aug 2021 at 15:16

I think if you and I were horses (or an Alpaca) we’d be shot! 😂😂😂😂😂😂

Wring as much as you can out of your private healthcare before your retirement, although as many of us here can attest to, the NHS usually steps up magnificently when required (eventually).

I’m sorry you find yourself in this dilemma, years after you thought you’d “got away with it”, and maybe you have.

I’m still “getting away with it” after three-odd years, but Her Loveliness thinks I’m completely cured!

I had two CT scans recently for a cough. No lung disease, but a litany of other comorbities showed up, yet I have never felt so well! Some times, ignorance is bliss, just as with my <0.1 ‘undetectable’ PSA readings…

Cheers, John.

Edited by member 25 Aug 2021 at 16:42  | Reason: Not specified

Show Most Thanked Posts
User
Posted 27 Apr 2020 at 16:22

J

Great news and good to hear a reassuring positive story about surgery. Hope it continues for a very long time. 

Thanks Chris.

User
Posted 27 Apr 2020 at 16:50

That's great news.   

But a point for debate.  It's possible to imagine becoming less concerned as time goes on.   

It's a dare.  Could I put up with not knowing it was 0.09 and then finding out it's 0.16 with no history and tests 12 months apart.  I'd want to go onto more frequent tests if it went up to 0.09 or even 0.06.  It's <0.05.

All the best, Peter

User
Posted 27 Apr 2020 at 18:58
Fantastic news Francij
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Apr 2020 at 23:43

That’s fantastic news Jonathan, keep enjoying life and stay well.

Keith is waiting for a scan following his recent chemo treatment, so we are in limbo at the moment until hospitals start re-arranging appointments again. 

Ange

User
Posted 28 Apr 2020 at 00:03

My problem is I know I have residual PSA (thanks supersensitive!!) That has slowly risen over from 4 years from <0.008 to 0.030 12 months ago. 

Believe me I have researched it to death, had 2 separate second opinions, a second opinion on the pathology and in my case (T3a G6 clear margins) it  has all pointed to the same conclusion: Don't do anything until it gets to 0.1.  so if that is what I have decided the standard test will do.

So for now I will enjoy only having PSA anxiety once a year.

 

User
Posted 28 Apr 2020 at 07:47
Good news!

As I have said before, I asked two oncologists (one the top PCa doctor at the Royal Marsden) and my own surgeon about ‘super-sensitive assay”, i.e. PSA testing to lower than 0.1, and they all concurred that it’s more trouble than it’s worth except in a few rare cases.

My own hospital only tests to 0.1 anyway, so <0.1, ‘undetectable’ is a result.

Chill out for another year, that’s if you can in the middle of the plague pandemic.😷😷😷

Best of luck.

Cheers, John.

User
Posted 28 Apr 2020 at 10:23

Great news Francij1.

 

Ido4

User
Posted 28 Apr 2020 at 13:16
Great news
User
Posted 23 Aug 2021 at 22:57
Ok so following my 0.1 PSA result 3 months ago and subsequent >0.1 on a retest the Onco put me back on quarterly supersensitive PSA Tests to be "sure".

So the result today was 0.063 a doubling time of 2 years from my previous supersensitive test of 0.030 just over 2 years ago.

Then came the suprise - he has suggested I need salvage RT and 2 years of Bicalutimide.

He also said I probably have ten years before it gives me any trouble if untreated.

Discuss! Is this over treatment? 6 years of after my RP?

User
Posted 24 Aug 2021 at 09:02

I would go with your oncologists immediate plan and have one or two more quarterly tests just to be "sure" of the trend.  The doubling time suggests you've got plenty of time on your side to take a considered approach.

Flexi

 

 

User
Posted 24 Aug 2021 at 09:41
Get a second opinion from the top PCa oncologist at the Royal Marsden Hospital (look him up), and angle for a G-68 PET-PSMA scan before commencing any more treatment - not that minute metastases are likely to show up on a scan anyway!

That’s my master plan as well, if I find myself in your situation, which is more than likely within the next twelve years, according to the SKM Nomograms.

Best of luck.

Cheers, John.

User
Posted 24 Aug 2021 at 10:35
My thinking on this is that you don't want to give cancer too much of a head start to spread but on the other hand you want any RT to be directed on the cancer. Sometimes an oncologist can make a good guess from the way PSA moves that it is in the pelvic area and will plump for this. It's by no means certain it is always in the pelvic area though and even PSMA scans often don't show cancer cells where PSA is low. So it can sometimes be a fine call. Naturally, your consultant will do his best as to when and where to direct the RT but I would want to discuss this with him/her to learn how sure he/she is in directing the RT. Should you have a PSMA scan, this should be done prior to starting HT.
Barry
User
Posted 24 Aug 2021 at 10:36

Yes, it seems like rude haste to me. We don't know anything at the moment about whether Covid or the vaccine affect PSA readings and, if so, whether that is temporary or permanent. If it was John, I would want at least one more upward reading to be sure.

Edited by member 24 Aug 2021 at 14:09  | Reason: Not specified

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

User
Posted 24 Aug 2021 at 10:58
Further info: Because I am due a hip replacement in 2 weeks he has said I should get that done first, then another usPSA and a PSMA scan in 3 months. So kicked the ball down the road another 3 months..

He has also said he would want to treat my lymph nodes too not just the prostate bed.

He seems very keen on the genesis image guided SABR and for 12 months until I retire I will be covered for this, but I see this as a perverse incentive for me to get treated before I have to revert to the NHS.

What I am confused about is what are the actual guidelines? Half the country doesn't use usPSA (so I would still be a >) Radicals-RT treated at 0.1 and had no different outcomes to ajuvant RT, does the fact that I am 6 years since RP add to my risk if I delay or reduce it? As it was a confirmed G6 am I only at risk from local invasion?

User
Posted 24 Aug 2021 at 14:17

I think you mean <0.1 rather than >0.1

My worry would be that the specialist is keen to try a new toy (SABR) - at 6 years post-op with a doubling time of 2 years, even if it does turn out that you have a biochemical recurrence, your PSA is behaving like a classic 'cells left behind in the prostate bed'. Was there anything in your post-op pathology to suggest lymph node involvement???? The longer you go post-op before seeing PSA rise, and the slower the rate of rise, the lower the risk, generally. If you were 6 months post-op and your doubling time was 6 weeks, you would be in the tihs.

John waited until the PSA reached 0.12 before agreeing to a referral to oncology and by the time the appointment came through & RT/HT was agreed, it was 0.16. That was almost 2.5 years post-op and here he still is, bobbing along at 0.1 nearly 9 years later.

Edited by member 24 Aug 2021 at 18:52  | Reason: Not specified

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

User
Posted 24 Aug 2021 at 15:16

I think if you and I were horses (or an Alpaca) we’d be shot! 😂😂😂😂😂😂

Wring as much as you can out of your private healthcare before your retirement, although as many of us here can attest to, the NHS usually steps up magnificently when required (eventually).

I’m sorry you find yourself in this dilemma, years after you thought you’d “got away with it”, and maybe you have.

I’m still “getting away with it” after three-odd years, but Her Loveliness thinks I’m completely cured!

I had two CT scans recently for a cough. No lung disease, but a litany of other comorbities showed up, yet I have never felt so well! Some times, ignorance is bliss, just as with my <0.1 ‘undetectable’ PSA readings…

Cheers, John.

Edited by member 25 Aug 2021 at 16:42  | Reason: Not specified

User
Posted 24 Aug 2021 at 15:21
Hi Lyn that is my concern too. They didn't resect any lymph nodes because I was a G6 and the surgeon didn't see anything that warranted it at the time - it was only in the post op pathology that revealed a small focal breach and hence upgraded to T3A.

Just ringing my insurance to see if they will pay for a second opinion! May save them a large Genesis bill!

Must admit I was happy with my wait until 0.1 strategy agreed with this guy and my surgeon previously hence it was a shock when he said pull the trigger now. He also said it was safe to wait for my hip op, I don't like the contradiction in those positions! I certainly don't want to unnecessarily jeopardise my new life and happiness now.

I have 3 months grace to make my mind up, I am grateful for that!

Thanks again to all the wonderful people on this forum.

User
Posted 25 Aug 2021 at 03:27
I had my second opinion from the Royal Marsden oncologist on the NHS, although I did have to travel to Sutton in Surrey to get it.

Cheers, John.

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK