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

Notification

Error

Has my luck changed?

User
Posted 24 Jan 2024 at 19:08

Many of you know me.  Age 46, Dec 2016, radical prostatectomy, pT3b, Gleason 9 (4+5).

 

Completed 35 sessions of salvage radiotherapy in June 2018.

 

Completed 18 months of bicalutimide in August 2019.

 

Since 2018, my PSA has been >0.006.

 

My Oncologist explained that >0.006 indicated that I was either cured  or the cancer was in a deep sleep.  After a 5 year rest, it looks like it is awake again.

 

Today, it is 0.049, an increase of 0.043.

 

I know the increase is small and that my PSA is low.  I'm not panicking.  

 

I'm seeing my GP on Friday.  What questions should I be asking him?

 

 

User
Posted 30 Jan 2024 at 12:35

Unbelievable news.  My GP repeated the PSA test and it came back as undetectable, >0.025.  The hospital is using the Abbott Method to report the results.  >0.025 is now the lowest possible result.  

 

Gp will repeat psa test monthly for next three months for reassurance.

 

Thank you all for your support.

User
Posted 25 Jan 2024 at 14:46

I had a very long chat with one of the specialist nurses who was amazingly knowledgeable and supportive.

 

Assuming the reading is correct (I will ask for a retest) then:

 

PSA has increased sevenfold in the last year....the nurse said that is significant.

The speed of increase is probably indicative of pattern 9 disease. 

I will ask to go on 3 monthly testing.

I will ask for a referral to the Royal Marsden as it is an hour's drive away.  My Oncologist is no longer at the hospital I attended, so if I have to have a new Oncologist,  I might as well go to the Marsden.  They have some of the best treatments available and access to clinical trials.

I will ask about scanning in case SABR might be appropriate.  It is done at the Marsden but I don't know if my own hospital does it.

I want to put off hormone therapy for as long as possible.

 

 

User
Posted 28 Jan 2024 at 19:07

Originally Posted by: Online Community Member

Can I ask how concerning a doubling time of 4 months is?  I'm sure it's not great but I don't fully understand it.  Is it faster than most or fairly typical?

For a man with known recurrence, doubling time might be used to determine when to start life-long HT - so, for example, my dad's PSA's doubling time is about 4 years so he is not having HT because it would be about 20 years before the cancer was active enough to kill him (by which time he would be over 100). For a man who is incurable and is on HT, doubling time would be used to pinpoint when the HT starts to fail and when to introduce another HT or chemo or whatever. Generally speaking, a doubling time of 6 months is a concern and a doubling time of 6 weeks is very worrying. 

However, a doubling time of 4 months isn't good or bad in your current situation as you don't know you have a recurrence. PSA could be rising because you have had a recent increase in testosterone production, because you have a bit of a UTI perhaps. Small amounts of 'healthy' PSA can be produced in the liver, pancreas, adrenal gland, salivary ducts and breast.

For the last few years, John's PSA for most of the year sits at <0.1 but in September each year can rise to 0.1 / 0.11 - we assume this is 'healthy' or non-cancer related PSA caused by the increased cycling, red wine drinking and cheese eating of our 6 week trips to France. We can't calculate the doubling time because his January <0.1 could be 0.0001 or 0.0999 - there is no way of knowing. We are certainly not in recurrence territory although I accept that at some point in the future, we might be.    

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

User
Posted 23 Mar 2024 at 19:22

More good news.  I have now had a second PSA test after my questionable one in January.  It has come back as <0.025 undetectable.   

User
Posted 24 Jan 2024 at 19:08

Many of you know me.  Age 46, Dec 2016, radical prostatectomy, pT3b, Gleason 9 (4+5).

 

Completed 35 sessions of salvage radiotherapy in June 2018.

 

Completed 18 months of bicalutimide in August 2019.

 

Since 2018, my PSA has been >0.006.

 

My Oncologist explained that >0.006 indicated that I was either cured  or the cancer was in a deep sleep.  After a 5 year rest, it looks like it is awake again.

 

Today, it is 0.049, an increase of 0.043.

 

I know the increase is small and that my PSA is low.  I'm not panicking.  

 

I'm seeing my GP on Friday.  What questions should I be asking him?

 

 

User
Posted 24 Jan 2024 at 23:36
Ask him whether the sample was sent to the same lab as usual, and whether the surgery has noticed any other patients having sharp increases recently? I would also say (rather than ask) that you would like to see the oncologist if it rises over 0.1.

Not sure how often you are having PSA tests but my view is that if you are having them 6 monthly, you go back to 3 monthly. As you probably remember, I panicked a bit the first time John went above 0.1 but it has settled at or around that level for the last 5 years (which would have been about 5 years post-SRT) and the onco is not concerned.

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

User
Posted 24 Jan 2024 at 23:44

Well we've seen a few posts on here, where the GP would say anything less than 2.9 is good. So the first thing to do is make sure your GP knows you don't have a prostate and if you have PSA in your body it implies there are some active prostate cells somewhere in you body. Hopefully your GP isn't one of the ignorant ones.

At the moment your PSA does not meet the criteria of recurrence, the figures are so low that it could just be a blip. I suspect you will need to be under the care of an oncologist soon.

Dave

User
Posted 25 Jan 2024 at 08:01
Ulsterman that is not what you wanted at the start of 2024.

Before you start to panic I would ask for a retest. If that comes back without a < I would insist on a referral to Oncology immediately and 3 monthly PSA tests.

Assuming the worst and it's not an error, with your history of PSMA visibility at low levels I would be pushing for a PSMA scan too.

Other than test and scan I don't think there is anything else you can do (or should do) unless it starts taking off.

User
Posted 25 Jan 2024 at 08:26

Originally Posted by: Online Community Member
Dave....what is the criteria for recurrence in my circumstances?  Surely any rise from >0.006 indicates recurrence?

Hello mate.

It appears after salvage RT,  BCR is classed as anything greater or equal to 0.2 ng/Ml above nadir.

https://pubmed.ncbi.nlm.nih.gov/28581200

Adrian

Edited by member 25 Jan 2024 at 08:27  | Reason: Typo

User
Posted 25 Jan 2024 at 08:29

UM, not what you want to hear. I don't know how PSA testing machines are operated, but I have come across papers talking about ten fold errors in PSA testing. Could it be an error.

Thanks Chris 

 

User
Posted 25 Jan 2024 at 18:09

Sorry to read that Ulsterman. 

I once read that psa testing isn't that accurate below 0.03 but I recall that you had treatment at not much higher. 

For such a case the doubling time assuming a start point of 0.006 is.  

1.   0.012

2.  0.024

3.  0.048

Three doubles in 12 months or a doubling time of 4 months.

The start points could change in psa level or date which would change the calc.   However 0.006 seems good for making a point in my opinion.

You could look at other start points and get a feel for a range of trends and how they cluster, but I realise not everyone is like me.

In 12 months it could be at 0.2 at the rate above.   If so 0.2 isn't that high although I'd want another test asap as a confirmatory and then one in 3 months if it's right. It could be approaching 0.1 by then.   Three months would be the shortest test period at my hospital,  I suggested 6 weeks when mine became detectable. 

These figures are useful to make a case for treatment, in my opinion.

Good luck
Peter

 

 

 

User
Posted 30 Jan 2024 at 14:33

Best news ever, so pleased for you. Also gives encouragement to other Gleason 9 tb3 lads. David was diagnosed in 2015, he’s <0.1 stage 4  though he is on HT. Today is a good day. 

User
Posted 24 Mar 2024 at 11:36

Andy, I actually did have Covid just after Christmas, so maybe there is a connection. 

 

The hospital also bought a new machine, so I think that might be the issue.

 

Goes to show though, these tests are not always correct.

Show Most Thanked Posts
User
Posted 24 Jan 2024 at 23:36
Ask him whether the sample was sent to the same lab as usual, and whether the surgery has noticed any other patients having sharp increases recently? I would also say (rather than ask) that you would like to see the oncologist if it rises over 0.1.

Not sure how often you are having PSA tests but my view is that if you are having them 6 monthly, you go back to 3 monthly. As you probably remember, I panicked a bit the first time John went above 0.1 but it has settled at or around that level for the last 5 years (which would have been about 5 years post-SRT) and the onco is not concerned.

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

User
Posted 24 Jan 2024 at 23:44

Well we've seen a few posts on here, where the GP would say anything less than 2.9 is good. So the first thing to do is make sure your GP knows you don't have a prostate and if you have PSA in your body it implies there are some active prostate cells somewhere in you body. Hopefully your GP isn't one of the ignorant ones.

At the moment your PSA does not meet the criteria of recurrence, the figures are so low that it could just be a blip. I suspect you will need to be under the care of an oncologist soon.

Dave

User
Posted 25 Jan 2024 at 04:43

Lyn....I have an annual PSA test.  If I have tests every 3 months, is that so we can establish doubling time?  

User
Posted 25 Jan 2024 at 04:44

Dave....what is the criteria for recurrence in my circumstances?  Surely any rise from >0.006 indicates recurrence?

User
Posted 25 Jan 2024 at 08:01
Ulsterman that is not what you wanted at the start of 2024.

Before you start to panic I would ask for a retest. If that comes back without a < I would insist on a referral to Oncology immediately and 3 monthly PSA tests.

Assuming the worst and it's not an error, with your history of PSMA visibility at low levels I would be pushing for a PSMA scan too.

Other than test and scan I don't think there is anything else you can do (or should do) unless it starts taking off.

User
Posted 25 Jan 2024 at 08:26

Originally Posted by: Online Community Member
Dave....what is the criteria for recurrence in my circumstances?  Surely any rise from >0.006 indicates recurrence?

Hello mate.

It appears after salvage RT,  BCR is classed as anything greater or equal to 0.2 ng/Ml above nadir.

https://pubmed.ncbi.nlm.nih.gov/28581200

Adrian

Edited by member 25 Jan 2024 at 08:27  | Reason: Typo

User
Posted 25 Jan 2024 at 08:29

UM, not what you want to hear. I don't know how PSA testing machines are operated, but I have come across papers talking about ten fold errors in PSA testing. Could it be an error.

Thanks Chris 

 

User
Posted 25 Jan 2024 at 14:46

I had a very long chat with one of the specialist nurses who was amazingly knowledgeable and supportive.

 

Assuming the reading is correct (I will ask for a retest) then:

 

PSA has increased sevenfold in the last year....the nurse said that is significant.

The speed of increase is probably indicative of pattern 9 disease. 

I will ask to go on 3 monthly testing.

I will ask for a referral to the Royal Marsden as it is an hour's drive away.  My Oncologist is no longer at the hospital I attended, so if I have to have a new Oncologist,  I might as well go to the Marsden.  They have some of the best treatments available and access to clinical trials.

I will ask about scanning in case SABR might be appropriate.  It is done at the Marsden but I don't know if my own hospital does it.

I want to put off hormone therapy for as long as possible.

 

 

User
Posted 25 Jan 2024 at 18:09

Sorry to read that Ulsterman. 

I once read that psa testing isn't that accurate below 0.03 but I recall that you had treatment at not much higher. 

For such a case the doubling time assuming a start point of 0.006 is.  

1.   0.012

2.  0.024

3.  0.048

Three doubles in 12 months or a doubling time of 4 months.

The start points could change in psa level or date which would change the calc.   However 0.006 seems good for making a point in my opinion.

You could look at other start points and get a feel for a range of trends and how they cluster, but I realise not everyone is like me.

In 12 months it could be at 0.2 at the rate above.   If so 0.2 isn't that high although I'd want another test asap as a confirmatory and then one in 3 months if it's right. It could be approaching 0.1 by then.   Three months would be the shortest test period at my hospital,  I suggested 6 weeks when mine became detectable. 

These figures are useful to make a case for treatment, in my opinion.

Good luck
Peter

 

 

 

User
Posted 25 Jan 2024 at 19:04

Thanks Peter...that is useful

User
Posted 27 Jan 2024 at 14:13

On the NHS app, my results state that the Abbott Method has been used.

 

My understanding is that anything about 0.025 is considered detectable using this method.

 

No matter which method is used, my PSA has jumped 8fold in 12 months.

Does anybody understand this Abbott Method?

User
Posted 27 Jan 2024 at 21:47

Hi,
You've probably done some searching.  Having done a bit myself it seems Abbott is an assay made by a company called Abbott.  There is a comparison with 2 others although I think the nub of it is it's just one type which if you read the below adds to the point often raised that different labs have different results.  It might be some help.

As a side following my note above, perhaps I should mention that my psa shot up when it first became detectable but has been stable for around 15 months.  So forecasting gave a much worse situation and was a heads up for discussion but in reality wasn't anything like what happened.  Back to the topic:

Ref  https://iv.iiarjournals.org/content/35/6/3431

'Background/Aim: Lack of interchangeability between prostate-specific antigen (PSA) assays could have a clinical impact. We compared PSA assays from different manufacturers and calibrations. Patients and Methods: A total of 233 men who underwent prostate biopsy (PSA: 2-10 ng/ml; Beckman Coulter Access® Hybritech® as reference) were enrolled. Total (tPSA) and free PSA (fPSA) were also measured using the Roche cobas® and the Abbott Architect® methods. Results: Roche tPSA values were ≈1% higher than Beckman, while Abbott values were ≈5% lower. Roche had the highest diagnostic sensitivity (92%) compared to Beckman Coulter (87%) and Abbott (85%). Roche fPSA was ≈3% lower and Abbott ≈17% higher than that of Beckman. For the percentage of fPSA, Roche had the highest sensitivity (98%). Conclusion: Roche cobas® and Beckman Coulter Access® Hybritech® tPSA were almost interchangeable. While the agreement was acceptable for tPSA, this did not happen with fPSA and greater efforts for harmonization are required.'

 

I also found this using Bard AI tool.

On asking where it came from they said manufacturers data and journals but no links.  Sometimes it gives poor conclusions that could be misleading if you don't know the subject or dig hard enough.

'Overview:

  • Manufacturer: Abbott Laboratories
  • Technology: Chemiluminescent Microparticle Immunoassay (CMIA)
  • Instruments: Primarily used on the Abbott Architect platform
  • Specificity: Measures total PSA, which includes both free PSA and PSA complexed to alpha-1-antichymotrypsin
  • Purpose:

    • Aid in prostate cancer detection (in conjunction with DRE) in men 50+
    • Adjunctive test for managing prostate cancer patients

Key Features:

  • Sensitivity: Can detect PSA levels as low as 0.003 ng/mL
  • Linearity: Reliable results up to 100 ng/mL
  • Reproducibility: Consistent results within and between assays
  • Specificity: Minimizes interference from other substances

Testing Process:

  1. Blood Collection: A blood sample is drawn from the patient.
  2. Sample Preparation: Serum is separated from the blood cells.
  3. Assay: Serum is mixed with magnetic microparticles coated with anti-PSA antibodies and a chemiluminescent substrate.
  4. Binding: PSA in the sample binds to the antibodies on the microparticles.
  5. Washing: Unbound components are washed away.
  6. Signal Generation: A chemiluminescent reaction is triggered, producing light proportional to the amount of PSA bound.
  7. Measurement: The instrument measures the light intensity and calculates the PSA concentration.

Important Considerations:

  • Results Interpretation:

    • Normal PSA levels vary by age and ethnicity.
    • Elevated PSA can suggest prostate cancer or other prostate conditions (e.g., prostatitis, BPH).
    • Further testing (e.g., biopsy) is needed for diagnosis.

  • Comparison with Other Methods:

    • Abbott results may differ slightly from other manufacturers' assays due to variations in method and reagents.
    • Values from different assays shouldn't be used interchangeably.

Additional Information:

  • Abbott also offers a free PSA assay for evaluation of the ratio of free PSA to total PSA, which can help improve cancer detection accuracy.
  • Abbott's PSA assays are FDA-approved for clinical use.

Always consult with a healthcare professional for accurate interpretation of PSA test results and guidance on appropriate next steps.'

User
Posted 27 Jan 2024 at 23:29

Originally Posted by: Online Community Member

Dave....what is the criteria for recurrence in my circumstances?  Surely any rise from >0.006 indicates recurrence?

No, it doesn't. You may just have some normal PSA being generated from elsewhere in your body; my pregnant daughter probably has a higher PSA level than you do at the moment. You don't have a recurrence until your PSA goes above 0.1

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

User
Posted 27 Jan 2024 at 23:35

Originally Posted by: Online Community Member

Lyn....I have an annual PSA test.  If I have tests every 3 months, is that so we can establish doubling time?  

Partly, yes, but also because 12 months is too long to wait to see what is happening. It may be nothing sinister is happening but at your current doubling time, you will reach 0.2 in around 8 months so may be able to have detailed scans in October rather than waiting till next January

Abbott is just a manufacturer - it is like saying I vacuumed my house using the Dyson method and you did yours using the Hoover method.  

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

User
Posted 28 Jan 2024 at 08:20

Thank you, Lynn and Peter

User
Posted 28 Jan 2024 at 08:54

Can I ask how concerning a doubling time of 4 months is?  I'm sure it's not great but I don't fully understand it.  Is it faster than most or fairly typical?

User
Posted 28 Jan 2024 at 10:42
My understanding is that doubling time at < 0.1 values is an unreliable measure.
User
Posted 28 Jan 2024 at 13:44

I agree with francij. With any scientific experiment you should take account of measurement errors, or random fluctuations.

At one point my six monthly psa results went <0.1, 0.1, 0.2 from this it would be easy to conclude I have a PSA doubling time of six months. However the next two results were <0.1, 0.1 . So I don't have a PSA doubling time, or to be more precise my PSA doubling time is several thousand years.

When the PSA test is trying to measure very small values for example 0.049 even a tiny fluctuation will make a big percentage error.

Until Ulsterman has more test results it is almost impossible to draw any conclusions. Other than he has had RP and that means he should expect a very low PSA and would not expect to see a consistent rise. 

Edited by member 29 Jan 2024 at 03:57  | Reason: Not specified

Dave

User
Posted 28 Jan 2024 at 15:43

Thanks, Dave and Francij

User
Posted 28 Jan 2024 at 17:45

UM, all my PSA values are near the start of my profile. Some of the values doubled in a short period and then didn't go up at the next result Sometimes they went down.

Thanks Chris 

User
Posted 28 Jan 2024 at 19:07

Originally Posted by: Online Community Member

Can I ask how concerning a doubling time of 4 months is?  I'm sure it's not great but I don't fully understand it.  Is it faster than most or fairly typical?

For a man with known recurrence, doubling time might be used to determine when to start life-long HT - so, for example, my dad's PSA's doubling time is about 4 years so he is not having HT because it would be about 20 years before the cancer was active enough to kill him (by which time he would be over 100). For a man who is incurable and is on HT, doubling time would be used to pinpoint when the HT starts to fail and when to introduce another HT or chemo or whatever. Generally speaking, a doubling time of 6 months is a concern and a doubling time of 6 weeks is very worrying. 

However, a doubling time of 4 months isn't good or bad in your current situation as you don't know you have a recurrence. PSA could be rising because you have had a recent increase in testosterone production, because you have a bit of a UTI perhaps. Small amounts of 'healthy' PSA can be produced in the liver, pancreas, adrenal gland, salivary ducts and breast.

For the last few years, John's PSA for most of the year sits at <0.1 but in September each year can rise to 0.1 / 0.11 - we assume this is 'healthy' or non-cancer related PSA caused by the increased cycling, red wine drinking and cheese eating of our 6 week trips to France. We can't calculate the doubling time because his January <0.1 could be 0.0001 or 0.0999 - there is no way of knowing. We are certainly not in recurrence territory although I accept that at some point in the future, we might be.    

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

User
Posted 29 Jan 2024 at 01:00

Thanks, Lyn.  At this stage, all I want is answers, and until I get to sit with my Oncologist, I won't have any.  It's doing my head in.

User
Posted 30 Jan 2024 at 12:35

Unbelievable news.  My GP repeated the PSA test and it came back as undetectable, >0.025.  The hospital is using the Abbott Method to report the results.  >0.025 is now the lowest possible result.  

 

Gp will repeat psa test monthly for next three months for reassurance.

 

Thank you all for your support.

User
Posted 30 Jan 2024 at 13:39
Fantastic! So happy to read it Ulsterman!

Great news!

User
Posted 30 Jan 2024 at 14:15

Very good news.

Dave

User
Posted 30 Jan 2024 at 14:33

Best news ever, so pleased for you. Also gives encouragement to other Gleason 9 tb3 lads. David was diagnosed in 2015, he’s <0.1 stage 4  though he is on HT. Today is a good day. 

User
Posted 30 Jan 2024 at 14:56
Great news buddy 💪
User
Posted 30 Jan 2024 at 17:47

That's good to hear and obviously a relief, and it's a sunny day.  Your GP is a very good person doing a test every month for 3 months for re-assurance. 

My theory is that hospitals test to 0.006 because they have doctors who want to push the tech, whereas other hospitals want to keep the peace until the vast majority of cases need monitoring e.g. 0.1.  Others do a compromise which gives a good trend history.

As it's a leap year you might go for the 29th Feb.  All the best Peter

User
Posted 30 Jan 2024 at 18:19
Excellent news Ulsterman. Must come as such a relief.

Best of luck going forward.

Cheers

Bill

User
Posted 30 Jan 2024 at 20:09

UM , great news, also  sounds like you have a great GP.

Thanks Chris 

User
Posted 30 Jan 2024 at 22:04
Phew
User
Posted 23 Feb 2024 at 18:37

My post about USPSA testing sensitivity has been moved to a new post.

Thanks for all your responses and support.

https://community.prostatecanceruk.org/posts/t30312-New-level-of-sensitivity-that-my-annual-PSA-test-returned-this-year

User
Posted 23 Mar 2024 at 19:22

More good news.  I have now had a second PSA test after my questionable one in January.  It has come back as <0.025 undetectable.   

User
Posted 23 Mar 2024 at 19:38

Great new Ulsterman, onwards and downwards😊

Derek

User
Posted 23 Mar 2024 at 19:48

UM , great news.

Thanks Chris 

User
Posted 23 Mar 2024 at 21:03

Brilliant news mate!

User
Posted 24 Mar 2024 at 08:52
👍Always good to see the < sign
User
Posted 24 Mar 2024 at 09:22

Good news.

Just wondering if the raised test corresponded with having had COVID in the previous month (which is a known issue), or a COVID vaccination, which has come up in many support groups?

User
Posted 24 Mar 2024 at 11:36

Andy, I actually did have Covid just after Christmas, so maybe there is a connection. 

 

The hospital also bought a new machine, so I think that might be the issue.

 

Goes to show though, these tests are not always correct.

User
Posted 24 Mar 2024 at 18:09

That's Brilliant News, Ulsterman.

Best wishes,

JedSee.

User
Posted 24 Mar 2024 at 18:47

Fantastic news Ulsterman.

 

Ido4

User
Posted 24 Mar 2024 at 23:41

Great news

 

User
Posted 25 Mar 2024 at 17:51
Great news Ulsterman!

User
Posted 25 Mar 2024 at 19:04

Originally Posted by: Online Community Member

More good news.  I have now had a second PSA test after my questionable one in January.  It has come back as <0.025 undetectable.   

Excellent News Sir!

 
Forum Jump  
©2024 Prostate Cancer UK