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Post op PSA testing regime query

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User
Posted 19 Feb 2015 at 19:47

Since my robotic surgery in May 2013 I have progressed from 3 monthly PSA testing in the first year post diagnosis to 6 monthly testing in the second year to what will probably be annual testing.  Annual testing, so, being treated like everyone else that may not have had an encounter with PCa. 

So here is my question, I was deemed to have had an aggressive cancer.  My PSA was considered high for my age,.  There was a note on my PSA result that the GP surgery was supposed to call me in asap as it was high.  That was 3 or so days after the test.  I happened to be at the surgery for another far less sinister or serious matter about a month later and enquired about the PSA result and got the bad news in the reception area surrounded by folk.  Hey ho.  Then on, things moved very quickly, and you have to worry when the HNS moves quickly.

A subsequent PSA test showed a rose on 0.9 in a month, that was deemed aggressive.  

Robotic op 2 May 2013, no positive margins, T2 on diagnosis upgraded to a T3 on pathology.

If there is a recurrence, if some cells got missed and rejuvenated, would it be an aggressive recurrence?

And if it recurred, and if it would be aggressive, which seems logical given the original PSA results, is annual testing wise?

dave 

User
Posted 25 Feb 2015 at 15:18

Another day and a half of anxiety behind me as the blood was taken yesterday morning. If I include the 3 days leading up to the blood test, 4.5 days of angst in all. And despite my coming to terms with whatever may be, I still retreat into me as the test day approaches. Not as much as I used to though.

But, another milestone successfully put behind me, and I can relax again, until the next one.

New lab so can not directly compare to my previous results, but given to me by the receptionist as "0.1, normal, Doctor has seen it and says it is normal, nothing to worry about".

So, 22 months 'ish post op and still apparently okay. Take heart anyone else in a similar position.

atb

dave

User
Posted 25 Feb 2015 at 20:31

Good news Dave
You can relax for 6 months till the next one!

I know what you mean about the time between the test and the result, it's certainly a worrisome time. My wait is 10 days min as my hospital doesn't have the high sensitivity test equipment so they send it away to Sheffield.

Best wishes and good luck
Andy

User
Posted 25 Feb 2015 at 21:57

No, I think it indicates whether the tests are done in house or sent to an external provider, that's all.

Brilliant news, CB xxx

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

User
Posted 25 Feb 2015 at 22:04

Great news Dave, onwards and upwards.

User
Posted 25 Feb 2015 at 22:28

Brilliant, Dave. My results were done in an hour today. The miracles of modern science.

I have not allowed myself to get over anxious about the results. We were out at the theatre last night, and I always seem to have something to do.

Long may our good results continue!

Stay Calm And Carry On.
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User
Posted 20 Feb 2015 at 10:09

CB55, the plan here is usually 3 monthly for two years, then 6 monthly until year 5 and then annual testing. This worked fine for dad and allowed him to progressively put the cancer in the background and get on with life .... until it came back, of course. Now that his PSA is rising again, I would have liked him to go to 3 monthly testing but he has decided otherwise :-(

John has never made it to the happy stage of 6 monthly tests and continues with the 3 month regime - it is 6 years since his op but the PSA just acts up every now and then. In your circumstances, I think an annual test is too infrequent for peace of mind at this stage so would be asking for an in-betweeny from the GP.

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

User
Posted 20 Feb 2015 at 10:14

Alan, not always the case .... our consultant urologist is superb, the GP is a bit in the dark and the nurse has never ever returned a call or met John :-( Dad and Stan had the same nurse specialist and she never returned any calls about them either. It's a bit like a tombola, apparently .... everyone gets something but some only get the tin of beans while a lucky few get the luxury chocolates

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

User
Posted 20 Feb 2015 at 10:22

Thanks for the input all. I have just signed up with a new surgery, again, since moving on November. So I have no history with the staff but from first registration and checking they seem to keen to look after me well and thoroughly.

My appointed GP said that that he would like to get a set of PSA readings for me so that they know what they are dealing with. I liked that idea.

Aside from what may be the norm for post op PSA testing in different areas, is there any merit in the idea that if you had an aggressive cancer that you should be tested more frequently than someone who's cancer was not aggressive? The rationale being that if it reoccurs, the sooner it is recognised and started ti be dealt with the better. If on annual testing and it started up the day after your annual test it would not get picked up for a year.

dave

User
Posted 20 Feb 2015 at 10:25
Dave

never take a chance or a risk on this IMHO annually is not enough and certainly not so soon after your operation.

With regards to what format it takes should it return,I am guessing here but logic would say that it would be the same type of PCa and therefore be genetically the same as first time around. There again logic seems to play no part in this horrid disease.

I think it is all about you retaining control as that must help psychologically.

xx

Mo

User
Posted 20 Feb 2015 at 11:49

Hi Dave
For what it is worth on Radicals (scheduled by my oncologist) a high sensitivity test is done every 4 months for the 1st 2 years, Then 6 monthly to 5 years then annually to 10. I believe that at the 10 year point if my PSA is still undetectable I will finally be regarded as in remission.
I am pleased that my testing frequency will drop if my next test in May is still undetectable, as I find the 2 weeks between the test and the result difficult.
Cheers
Andy

Edited by member 20 Feb 2015 at 12:42  | Reason: Not specified

User
Posted 20 Feb 2015 at 12:28

Hi Dave,

My consultant 'standard practice' for all his RRP patients is, I understand, 3 monthly PSA for 2 years followed by 6 monthly for 1 year then discharge back to GP. I would feel uneasy about that! Personally I can only have (satisfactory) peace of mind once I've reached the 'gold standard' 10 year without biochemical recurrence. It's about sensible monitoring depending on clinical needs without causing undue anxiety. Delicate balance!

Regards,
Jacey

User
Posted 20 Feb 2015 at 12:51

Batholith, I think when you get to the 10 year mark you will find that you move on to ....... annual testing! Good job that my dad has continued with regular tests beyond his letter confirming that he was 'officially' in remission (a nice touch from our Mr P, I thought) as the recurrence came in the 13th year post-op :-(

Edited by member 20 Feb 2015 at 22:33  | Reason: Not specified

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

User
Posted 20 Feb 2015 at 13:12

My surgeon told me after seeing the results following my operation that any further treatment, I guess RT etc, would only cut in if my undetectable PSA rose to 0.2. That isn't much of a rise from a currently undetectable 0.003. He also said that any further treatment has the best chance of success if started early.

 

So, it appears to me that three monthly testing would probably be frequent enough to pick up a small rise in PSA and catch it before it reaches the magic 0.2 level. 6 monthly testing may not as of course the cancer has a longer period in which to grow. 12 monthly tests would be that much worse still.

 

I will be having 3 monthly tests for the first 2 years. I am supposed to go onto 6 monthly tests after that but I am thinking I would prefer to remain on 3 monthly tests for a bit longer.

 

Steve

User
Posted 20 Feb 2015 at 15:17

Steve, a rise from 0.003 to 0.2 would be almost a 70-fold increase so quite dramatic!

CB, I think most medics would say that the Gleason is immaterial once the cancer is removed - if it's gone, it's gone. Otherwise, why would anyone ever opt for curative treatment? :-)

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

User
Posted 20 Feb 2015 at 16:10

Originally Posted by: Online Community Member

Steve, a rise from 0.003 to 0.2 would be almost a 70-fold increase so quite dramatic!

CB, I think most medics would say that the Gleason is immaterial once the cancer is removed - if it's gone, it's gone. Otherwise, why would anyone ever opt for curative treatment? :-)

Hi Lyn,

I thought that the change in Gleason staging might be relevant when considering the likelihood of a recurrence?  Might be wrong, hope I am!  

The aggressive nature of my particular beast got me thinking about whether a blanket "off the peg" screening programme was advisable for all men?  Should all men be PSA screened 3 monthly in the first year, 6 monthly in year 2 and annually after that?  

For my peace of mind, and until anyone can prove categorically that my concerns are unfounded, I will be asking for checks at least bi-annually.

dave

 

 

User
Posted 20 Feb 2015 at 17:20

I think our equivalent of your CNS is our ED nurse Alan - a support to me as much as John ⭐️⭐️⭐️

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

User
Posted 20 Feb 2015 at 17:32
Quote:
Originally Posted by: Online Community Member

Hi Lyn,

I thought that the change in Gleason staging might be relevant when considering the likelihood of a recurrence?  Might be wrong, hope I am!  

The aggressive nature of my particular beast got me thinking about whether a blanket "off the peg" screening programme was advisable for all men?  Should all men be PSA screened 3 monthly in the first year, 6 monthly in year 2 and annually after that?  

For my peace of mind, and until anyone can prove categorically that my concerns are unfounded, I will be asking for checks at least bi-annually.

dave

 

 

Technically, your stats put you in the medium risk category, same as John. I can't remember now why you thought your beast was particularly aggressive? Regardless, my assumption would be that a man could have G10 but as long as it was fully contained and all removed, there is no G10 left to mess with your body or behave aggressively or otherwise. On the other hand, a G6 of which a few cells are left behind can continue to develop as G6 or escalate to G7 or G8 or even G10 and cause devastation. We have got beyond 3 years post-salvage but anything less frequent than 6 monthly monitoring would still seem unacceptable to me.

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

User
Posted 20 Feb 2015 at 18:20

Dave
your Gleason is a 3+4 =7 so not the most aggressive . However, I disagree with Lyn as due to it being classified as T3a that puts you in the high risk category. Welcome to my club; -)

As you know I had LRP a rise in PSA soon after and had RT. The RT finished 18 months ago and I am waiting to give blood for my third PSA test as they decided on 6 monthly. This is in line with NICE guidelines. At first I thought I'm not sure about that....but theres a line to be drawn...do you want the PSA anxiety every 3 months or to get on with your life and have a longer time in between to allow you to do that. If I had 3 monthly tests and it showed an increase they would want to test again anyway...
I'm happy with the decision to go for 6 monthly tests as it has allowed me to enjoy spring/summer and autumn winter....so maybe not the worrier people think i am :-) if my next PSA is through the roof I may change my view but then again if it is through the roof something has gone massively wrong to increase that fast....if it starts creeping up they will test me more regularly....hopefully it will be fine

Bri

Edited by member 20 Feb 2015 at 18:25  | Reason: Not specified

User
Posted 20 Feb 2015 at 19:01
Dave

My testing is 3,6,9 and 12 months plus half session with urology nurse, then goes to 18 months and 24 months test at GP. A rise above 0.1 would prompt an appointment with my consultant. Not sure what happens two years.

Thanks Chris

User
Posted 20 Feb 2015 at 19:05

Hello Lynn
Your reply to me prompted me to check back in the Radicals leaflets I was given and it does say PSA tests every 4 months for 2 years then then every 6 months upto 5 years and annually up to 10. You can read this in paragraph A11 of this document: http://www.radicals-trial.org/pdf/RADICALS%20PIS%20-%20RADICALS-HD%202014.pdf. I guess different hospitals, insurances etc do different things.
Cheers
Andy

User
Posted 20 Feb 2015 at 19:06

Post PSA testing...  I had my RP in May 2014,

I've had two 3 monthly psa checkups, the last one was December (2114) all OK, since then I havent had appointment,

I did ring the cancer UK nurse who assured me it wasnt an issue, it didnt matter, but I'm seriously questioning his view on this and think maybe I should have an appointment sometime in March, my cancer was not aggressive , gleason 3+4=7 and my PSA was 5 when first diagnosed ( they told me it was the best type of cancer to have) and yes there right of course , feeling a bit paranolid now though  ...

User
Posted 20 Feb 2015 at 19:30

My post op histology revealed a G7 ( 3+4 ) pT2c...

I had my first follow up PSA test at 8 weeks post op.......subsequent PSA tests have been scheduled at 4 monthly intervals to date.


I've no idea how long this will continue but I would not be comfortable if my PSA tests were extended beyond 6 monthly intervals for the first 5 years...



 

User
Posted 20 Feb 2015 at 22:36
Originally Posted by: Online Community Member

Hello Lynn
Your reply to me prompted me to check back in the Radicals leaflets I was given and it does say PSA tests every 4 months for 2 years then then every 6 months upto 5 years and annually up to 10. You can read this in paragraph A11 of this document: http://www.radicals-trial.org/pdf/RADICALS%20PIS%20-%20RADICALS-HD%202014.pdf. I guess different hospitals, insurances etc do different things.
Cheers
Andy

Yes, but really can you envisage not being tested after the ten years is up? Surely no-one that has had cancer can afford not to check every so often that they are still clear?

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

User
Posted 20 Feb 2015 at 22:42
Originally Posted by: Online Community Member

Dave
your Gleason is a 3+4 =7 so not the most aggressive . However, I disagree with Lyn as due to it being classified as T3a that puts you in the high risk category. Welcome to my club; -)

Bri

John was also changed to T3 post-op (and that turned out to be right seeing as how he then had a recurrence) but they still had him down as medium (rather than aggressive) even though he was high risk. The onco said that aggressive means something different to high risk?

Edited by member 20 Feb 2015 at 22:43  | Reason: Not specified

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

User
Posted 20 Feb 2015 at 23:05

Yep I agree Lyn....my point was that with aT3a Dave's PCa puts him in the high risk category even though his PCa isn't particularly aggressive

High risk appliies to men with a pre treatment PSA above 20 and or Gleason above 7 and or extra capsular extension
Bri

User
Posted 20 Feb 2015 at 23:34
Quote:
Quote:


Yes, but really can you envisage not being tested after the ten years is up? Surely no-one that has had cancer can afford not to check every so often that they are still clear?

 

Agree. I would probably maintain my monitoring way past any 'official' remission at least yearly! Living in hope ..... 😉

 

Jacey.

 

User
Posted 20 Feb 2015 at 23:42

Thanks Brian.

I thought I was in the low to middle risk category, mistakenly, apparently.

Really made my weekend.

Dratsab.

enjoy.

dave

PS Lerve you really. Life is limited. Make the most of it. Almost 2 into a possible 5

User
Posted 21 Feb 2015 at 07:45

Hello Lynn,
My contribution wasn't about what happens after ten years, I simply wanted to add what the Radicals requirements are.

In 8 years time, should I make it that far and still be undetectable, I expect (I haven't asked it is to far away, too uncertain to be bothered about) that testing will continue probably under the auspices of my GP rather than the hospital. I will certainly ask for them to be done at that point if it doesn't happen automatically.

If my PSA starts to rise again before the 10 years is up then as my oncologist is on the ball, I imagine he will want to increase the test frequency beyond that expected by Radicals. He told me when I had the PSA rise in October that he would not start further treatment until my PSA reaches 2.

Cheers
Andy

User
Posted 25 Feb 2015 at 15:18

Another day and a half of anxiety behind me as the blood was taken yesterday morning. If I include the 3 days leading up to the blood test, 4.5 days of angst in all. And despite my coming to terms with whatever may be, I still retreat into me as the test day approaches. Not as much as I used to though.

But, another milestone successfully put behind me, and I can relax again, until the next one.

New lab so can not directly compare to my previous results, but given to me by the receptionist as "0.1, normal, Doctor has seen it and says it is normal, nothing to worry about".

So, 22 months 'ish post op and still apparently okay. Take heart anyone else in a similar position.

atb

dave

User
Posted 25 Feb 2015 at 17:58
Only one thing I can say Dave, Fantastic

xx

Mo

User
Posted 25 Feb 2015 at 18:23
Dave,

What a great result! You must be really pleased. Hope you have many more good results.

Steve

User
Posted 25 Feb 2015 at 18:46

Don't want to ssip you off again Dave...but I thought you were on the sensitive PSA testing regime..

Sorry mate but I'd want to know if the receptionist had missed a < symbol before the 0.1 which imo is significant

Bri

User
Posted 25 Feb 2015 at 20:14

Originally Posted by: Online Community Member

Don't want to ssip you off again Dave...but I thought you were on the sensitive PSA testing regime..

Sorry mate but I'd want to know if the receptionist had missed a < symbol before the 0.1 which imo is significant

Bri

 

AGAIN Brian?  When did you do that then?  What have I missed?  Forget the Pca, old age is getting to me now!

When I got through to the receptionist I did ask about any "symbols" and said to her that normally there would be a sign for "more than" or "less than".

She could not enlighten me further.  And she has told me what the reading is, and that the GP has said "all normal, nothing to worry about", then that is what I have to go on.   

Like I said above this is a different machine to that which had been measuring me previously.  I will just have to establish my new normals.

I am pleased tat it is another test in the normal range.

atb

dave

 

 

User
Posted 25 Feb 2015 at 20:31

Good news Dave
You can relax for 6 months till the next one!

I know what you mean about the time between the test and the result, it's certainly a worrisome time. My wait is 10 days min as my hospital doesn't have the high sensitivity test equipment so they send it away to Sheffield.

Best wishes and good luck
Andy

User
Posted 25 Feb 2015 at 21:02

Thanks Andy,

Does the quick turnaround indicate that the Horton Lab has a sensitive machine?

When I was tested at the Buckingham Hospital I had to wait 3 days for the result.

Anyway, I am pleased and intend enjoy the week and the weekend. And the next 3 to 4 months.

dave

User
Posted 25 Feb 2015 at 21:57

No, I think it indicates whether the tests are done in house or sent to an external provider, that's all.

Brilliant news, CB xxx

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

User
Posted 25 Feb 2015 at 22:04

Great news Dave, onwards and upwards.

User
Posted 25 Feb 2015 at 22:06

Thank you Paul, and thank you also Lyn.

dave

who is somewhat ylddit tonight!

LOL

Edited by member 26 Feb 2015 at 09:01  | Reason: Not specified

User
Posted 25 Feb 2015 at 22:28

Brilliant, Dave. My results were done in an hour today. The miracles of modern science.

I have not allowed myself to get over anxious about the results. We were out at the theatre last night, and I always seem to have something to do.

Long may our good results continue!

Stay Calm And Carry On.
User
Posted 26 Feb 2015 at 19:26

Lynn is right Dave, it just means my hospital doesn't have the equipment

cheers

Andy

 

 
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