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Post RP PSA from <0.02 to 0.36 in 6 months

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User
Posted 13 Apr 2022 at 15:03

I'm new here and not sure if I'm in the right section but here goes...  My husband had RP in August 2019 and until this month all his PSA readings were <0.02 but the latest has come back at 0.36!  I'm really very worried as in 6 months that seems a frighteningly big increase. He can't speak to his surgeon until next week but has anyone heard of rise of this magnitude in such a short space of time?

Edited by member 14 Apr 2022 at 14:53  | Reason: error in subject title amended to <0.02

User
Posted 13 Apr 2022 at 19:56

Hi, Yes it happens, not great news, but not totally bad. Anything above 0.1 for someone who has had a prostatectomy is a course for concern. The fact it stayed low for a long time, means it wasn't a lot of active cancer in distant metastasis. So it is almost certainly a small amount of cells in the prostate bed. 

The surgeon should refer you to an oncologist at the next meeting, do not be fobbed off with "let's wait and see". Next treatment will probably be radiotherapy to prostate bed, but you need the oncologist to be advising on that. Salvage radiotherapy (SRT) is the buzz word you will be hearing a lot of now.

Dave

User
Posted 13 Apr 2022 at 20:38
It's pretty common, I'm afraid. Around a third of men who've had an RP go on to need salvage radiotherapy. It's extremely effective, so don't get too stressed about it.

Best wishes,

Chris

User
Posted 14 Apr 2022 at 00:15
That rise 6 months after an undetectable is very unusual are you sure it's not 0.036? That would be more realistic.
User
Posted 14 Apr 2022 at 00:28

Francij makes a good point. Looking at you bio, it was only 4.6 when this started and it wasn't a particularly aggressive cancer. Definitely worth checking the decimal places.

Dave

User
Posted 15 Apr 2022 at 17:07

Sorry to read about your husband’s biochemical recurrence.

I went from undetectable to 0.3 in 3 months around a year after prostatectomy so it does happen I’m afraid. Like your husband I was floored, felt worse than original diagnosis.

Have a look at my profile, I’ve  had hormone therapy plus salvage radiotherapy. Last hormone injection was a three month one January 2019. As Dave says don’t be fobbed  off, you need to get things moving asap once a PSA of 0.2+ has been reached.

Ido4

User
Posted 15 Apr 2022 at 17:43
Thanks for the kind reply Ido4. We're still coming to terms - which no doubt sounds a bit pathetic considering the journey you and others have been and indeed still are on. We've taken on board everything you and the others have said and will update asap.
User
Posted 15 Apr 2022 at 18:33

Hi Ferdie, it doesn’t sound in the least pathetic. You are rightly coming to terms with a recurrence and the need for further treatment. Your feelings are totally normal and understandable.

I wish you both all the best going forward.

 

Ido4

User
Posted 16 Apr 2022 at 06:58
Hi Ido sorry but I disagree, your rise was from <0.1 and you had T3A with seminal vesicle involvement.

Ferdie is a confirmed T2, and started from <0.02 so a factor of 10 higher potential rise

Very unusual.. Certainly worth double checking the previous and current PSA.

User
Posted 16 Apr 2022 at 07:38
I’m the silly-sausage who has created my own treatment path and refused many treatments over time. But take heart in that my post op psa was 1.5 , and I refused SRT , yet I’m still here 7 yrs on. So don’t panic !

As above if that figure is right then SRT May still give you a cure path. All the best

User
Posted 16 Apr 2022 at 23:30

Hi Ferdie,

If it was me I'd hang my hat on thinking it was a false reading.  As you say, a doubling rate of every 6 weeks is very unusual.    I wonder how the nurse decided it was definitely correct.  Also the surgeon is seeing you next week and didn't want a re-check before then.  If I was him or was it her I'd want it double checking before referring to Oncology unless there are other reasons.

If it is correct or anything like it, you should get a psma scan then perhaps hormones and radiotherapy. It will be interesting to hear what the surgeon has to say.   

At this time I always have questions in the back of my mind as to whether treatment offered is the best for the patient or what they're constrained to because of staff shortages or whatever.   If I suspected it was a delay I'd be looking for ways round it or alternatives.   One treatment that shouldn't be delayed is hormone treatment as it only needs a jab, although if you're have a scan you need the scan first.  I hope it works out.  All the best, Peter

User
Posted 22 Apr 2022 at 19:01

That’s great news regarding the PSA. I’m not sure scans would pick anything up at a level of 0.03.

Ido4

User
Posted 23 Apr 2022 at 00:22
Sounds like someone reported the decimal place incorrectly.

Re scans a PSMA PET scan is as good as it gets but you will be lucky (unlucky!?) If it picks anything up at that level. Read Ulsterman profile but remember he had a T3A not a T2 like you guys. I think you just need to relax and wait and see where it goes next.

User
Posted 23 Apr 2022 at 09:15
Ferdie, good news to read this!
User
Posted 24 Apr 2022 at 08:32
PSA is a constant source of annoyance. Usually GPs receptionists neglect to mention the <.

Regarding decimal places it's a post code lottery as to what is in use, I prefer the 3 decimal place measure now having dallied with 1 decimal place thinking it would reduce PSA anxiety. It didn't because as soon as I went over 0.05 they started reporting it as 0.1. So I have reverted to 3 decimal places even though it means a 2 hour drive to Wolverhampton. When you are 0.076 it's those last 2 that make the difference!

User
Posted 24 Apr 2022 at 13:54

Hi Ferdie,

So glad things are turning out well. If the test was done at the GP surgery and you have Patient access you may be able to see the original test result. If done at the hospital you are able to see the records.

As an aside, I once worked in a room with foreign exchange traders. They would speak an exchange rate of 1.15 as "one spot one five", in aviation it is spoken as "one decimal one five". It would be so much better if people just told us what was written, rather than what they think the number is.

Similarly never trust anyone saying PSA is "normal", this word is used if PSA is less than 4.0 and is not in the least bit normal for someone without a prostate.

Dave

User
Posted 24 Apr 2022 at 19:31

Hi Ferdie,

GP draws blood and hospital processes it is the same service I get. The results will be on the GPs records rather than the hospital ones.

Most GPs can now register you with an app, the one my GP practice uses is this one.

https://www.patientaccess.com/ 

It has my test results going back several years prior to my registering. So it may be worth seeing if your GP has this facility, most GPs are keen for you to use it as it saves them time. If you register you should be able to see the result which caused this problem, and work out if this was miscommunication.

 

Dave

User
Posted 25 Apr 2022 at 02:33

Really pleased to see the updated PSA result and that the original one appears to be an error 👍🏽

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User
Posted 13 Apr 2022 at 19:56

Hi, Yes it happens, not great news, but not totally bad. Anything above 0.1 for someone who has had a prostatectomy is a course for concern. The fact it stayed low for a long time, means it wasn't a lot of active cancer in distant metastasis. So it is almost certainly a small amount of cells in the prostate bed. 

The surgeon should refer you to an oncologist at the next meeting, do not be fobbed off with "let's wait and see". Next treatment will probably be radiotherapy to prostate bed, but you need the oncologist to be advising on that. Salvage radiotherapy (SRT) is the buzz word you will be hearing a lot of now.

Dave

User
Posted 13 Apr 2022 at 20:38
It's pretty common, I'm afraid. Around a third of men who've had an RP go on to need salvage radiotherapy. It's extremely effective, so don't get too stressed about it.

Best wishes,

Chris

User
Posted 13 Apr 2022 at 21:09

Hi Dave, thanks so much for your reply. This news seems to have rocked him more than the original Pc diagnosis and I’m handling it less well than him! It’s like we were of the feeling that it was sorted after so 30 months of ‘non-detectable’ readings. But this bloody thing just refuses to give up.

User
Posted 13 Apr 2022 at 21:19

Hi Chris, thanks very much for your kind reply. It helps to know we’re not in uncharted territory with the news. Not being able to speak to the surgeon or anyone since we heard has made us feel very worried and low I’m really glad I came on here to share.

User
Posted 14 Apr 2022 at 00:15
That rise 6 months after an undetectable is very unusual are you sure it's not 0.036? That would be more realistic.
User
Posted 14 Apr 2022 at 00:28

Francij makes a good point. Looking at you bio, it was only 4.6 when this started and it wasn't a particularly aggressive cancer. Definitely worth checking the decimal places.

Dave

User
Posted 14 Apr 2022 at 09:03
Yes it does appear to be very unusual - can’t find anything anywhere which references a rise like that. And that it was an error was our initial reaction, but the Uro nurse who gave us the result over the phone said it was definitely correct. Then we thought as they only ever report to 2 places it must be right as they’d have said it was 0.03? My husband also asked whether the surgeon said he wanted another test to be done she said no but he’d speak to us sometime next week. To say we’re not sleeping well would be an understatement!
User
Posted 15 Apr 2022 at 17:07

Sorry to read about your husband’s biochemical recurrence.

I went from undetectable to 0.3 in 3 months around a year after prostatectomy so it does happen I’m afraid. Like your husband I was floored, felt worse than original diagnosis.

Have a look at my profile, I’ve  had hormone therapy plus salvage radiotherapy. Last hormone injection was a three month one January 2019. As Dave says don’t be fobbed  off, you need to get things moving asap once a PSA of 0.2+ has been reached.

Ido4

User
Posted 15 Apr 2022 at 17:43
Thanks for the kind reply Ido4. We're still coming to terms - which no doubt sounds a bit pathetic considering the journey you and others have been and indeed still are on. We've taken on board everything you and the others have said and will update asap.
User
Posted 15 Apr 2022 at 18:33

Hi Ferdie, it doesn’t sound in the least pathetic. You are rightly coming to terms with a recurrence and the need for further treatment. Your feelings are totally normal and understandable.

I wish you both all the best going forward.

 

Ido4

User
Posted 15 Apr 2022 at 19:08

🙂Thanks Ido4 X

Edited by member 15 Apr 2022 at 19:09  | Reason: Not specified

User
Posted 16 Apr 2022 at 06:58
Hi Ido sorry but I disagree, your rise was from <0.1 and you had T3A with seminal vesicle involvement.

Ferdie is a confirmed T2, and started from <0.02 so a factor of 10 higher potential rise

Very unusual.. Certainly worth double checking the previous and current PSA.

User
Posted 16 Apr 2022 at 07:38
I’m the silly-sausage who has created my own treatment path and refused many treatments over time. But take heart in that my post op psa was 1.5 , and I refused SRT , yet I’m still here 7 yrs on. So don’t panic !

As above if that figure is right then SRT May still give you a cure path. All the best

User
Posted 16 Apr 2022 at 09:40
Thanks all for your further thoughts and encouragement. We’ll definitely be asking for another PSA test next week. We’ve been thinking if the 0.36 reading is correct it would mean his level had doubled about 4 times in the space of 6 months? All fingers crossed it’s an error!!
User
Posted 16 Apr 2022 at 23:30

Hi Ferdie,

If it was me I'd hang my hat on thinking it was a false reading.  As you say, a doubling rate of every 6 weeks is very unusual.    I wonder how the nurse decided it was definitely correct.  Also the surgeon is seeing you next week and didn't want a re-check before then.  If I was him or was it her I'd want it double checking before referring to Oncology unless there are other reasons.

If it is correct or anything like it, you should get a psma scan then perhaps hormones and radiotherapy. It will be interesting to hear what the surgeon has to say.   

At this time I always have questions in the back of my mind as to whether treatment offered is the best for the patient or what they're constrained to because of staff shortages or whatever.   If I suspected it was a delay I'd be looking for ways round it or alternatives.   One treatment that shouldn't be delayed is hormone treatment as it only needs a jab, although if you're have a scan you need the scan first.  I hope it works out.  All the best, Peter

User
Posted 17 Apr 2022 at 14:10

Hi Peter, thanks for your post.  We are very confused about the 'state of play' but as you say we're doing our best to hang on to the thought it’s a false reading and that when we eventually get to speak to the surgeon, things will be clearer and we’ll understand the way forward.  Will update here as soon as.

User
Posted 21 Apr 2022 at 11:31
Hello All,

We saw a consultant yesterday, not one we've met before. He didn't express any surprise at the huge PSA increase (which surprised us), but they took blood for another PSA test and said a PSMA Scan would be organised. Couldn't tell us what 'specific type' it would be though. Anyway, all fingers continue to be crossed it won't be needed!

User
Posted 22 Apr 2022 at 17:28

The latest PSA test result came back at 0.03!  A huge relief, but the nurse said the surgeon might still offer a scan and that we’d know next week. Though the level is up on the previous <0.02 6 months ago, can anyone tell us whether there are scans that would show anything at 0.03 and if so, what they are?

User
Posted 22 Apr 2022 at 19:01

That’s great news regarding the PSA. I’m not sure scans would pick anything up at a level of 0.03.

Ido4

User
Posted 22 Apr 2022 at 19:52

Ferdie, I have had two vials of blood taken at the same time from the same needle, sent to the same lab at the same time and they came back with a difference of 0.01. The 0.36 sounds like a mistake and a 10 fold increase sounds typical of a lab error. My post treatment PSA has fluctuated but over a period of time the trend was upwards. My oncologist says the machines are reliable it is the patients blood that isn't.

Good that your team are being vigilant but hopefully you can relax and await the next test, you could use the anxiety card and get the next test done a bit quicker.

Remember 70 percent of surgery cases are successful.

Thanks Chris  

User
Posted 23 Apr 2022 at 00:22
Sounds like someone reported the decimal place incorrectly.

Re scans a PSMA PET scan is as good as it gets but you will be lucky (unlucky!?) If it picks anything up at that level. Read Ulsterman profile but remember he had a T3A not a T2 like you guys. I think you just need to relax and wait and see where it goes next.

User
Posted 23 Apr 2022 at 09:15
Ferdie, good news to read this!
User
Posted 23 Apr 2022 at 15:47

Thank you to all for your further positive thoughts and encouragement. We’re certainly much more relaxed than we were but remain curious about the result that sparked off the bout of worry.  Is it the case that PSA tests at hospitals can detect levels of 0.020 and less, but to reduce patient anxiety they give only the most significant digits - as in 0.036 being reported as 0.03 or 0.04? Wondered if anyone had any knowledge/experience of this and if so, whether you can get the full number - if you want it!😀

User
Posted 24 Apr 2022 at 08:32
PSA is a constant source of annoyance. Usually GPs receptionists neglect to mention the <.

Regarding decimal places it's a post code lottery as to what is in use, I prefer the 3 decimal place measure now having dallied with 1 decimal place thinking it would reduce PSA anxiety. It didn't because as soon as I went over 0.05 they started reporting it as 0.1. So I have reverted to 3 decimal places even though it means a 2 hour drive to Wolverhampton. When you are 0.076 it's those last 2 that make the difference!

User
Posted 24 Apr 2022 at 09:45

We think knowing the full number from here on in would be the best thing for us. Will ask the surgeon where and how it can be made available even if it means, like you, travelling a bit further afield.

User
Posted 24 Apr 2022 at 13:54

Hi Ferdie,

So glad things are turning out well. If the test was done at the GP surgery and you have Patient access you may be able to see the original test result. If done at the hospital you are able to see the records.

As an aside, I once worked in a room with foreign exchange traders. They would speak an exchange rate of 1.15 as "one spot one five", in aviation it is spoken as "one decimal one five". It would be so much better if people just told us what was written, rather than what they think the number is.

Similarly never trust anyone saying PSA is "normal", this word is used if PSA is less than 4.0 and is not in the least bit normal for someone without a prostate.

Dave

User
Posted 24 Apr 2022 at 17:04

Hi Dave, the blood’s always been drawn at GP’s and we’ve always assumed analysis was done at the local hospital. But from here on in we’re going to ask to see all readings/records and take nothing for granted.

User
Posted 24 Apr 2022 at 19:31

Hi Ferdie,

GP draws blood and hospital processes it is the same service I get. The results will be on the GPs records rather than the hospital ones.

Most GPs can now register you with an app, the one my GP practice uses is this one.

https://www.patientaccess.com/ 

It has my test results going back several years prior to my registering. So it may be worth seeing if your GP has this facility, most GPs are keen for you to use it as it saves them time. If you register you should be able to see the result which caused this problem, and work out if this was miscommunication.

 

Dave

User
Posted 24 Apr 2022 at 19:56

Thanks Dave - we’ll be all over this! And we’ve made a fairly lengthy list of questions for when we get to speak to urology, hopefully next week.

User
Posted 25 Apr 2022 at 02:33

Really pleased to see the updated PSA result and that the original one appears to be an error 👍🏽

User
Posted 25 Apr 2022 at 11:34

Thank you Elaine! 🙏 

 
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