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User
Posted 22 Sep 2016 at 16:56
It's 6 months since my last PSA test when it hit the lowest it's been at 0.01 since the ART. The oncol is happy for a yearly test but has given me a spare blood form should I feel the need for a 6 month test.
I'm in two minds what to do. Part of my brain is saying be safe and get tested but of course there is the twitchy bum anxiety that goes with that. The other part of my brain is trying to forget all about it which is quite hard.
I was dx as high risk but question why they'd put me on annual tests if the risk is high.
I'm not really asking for advice as its my decision but thought writing it down in here may some how help me decide

Bri
User
Posted 22 Sep 2016 at 17:16

Bri
As we've said before it's very hard to relax , whatever the outcome of your surgery or RT or HT or Bracchy or whatever. It's always with all of us who are afflicted by this blight , cured or not. You've been through the mill in more ways than one , but you know enough about PCa to realise you are now in a very good position indeed. Six months , one year ?? Would it make a great deal of difference ?? I guess it depends on your personality. I'd love to say just relax and have an entire year cancer free , but I know you're a worrier - like us all.
Do what you feel is best and it's good you got it off your chest. I know my GP really well. If I asked for a test he would prob give it. If he thought I didn't need it , he would tell me and I'd respect that.
Take care , relax :-)

User
Posted 22 Sep 2016 at 17:45
Bri

Personally I would like a couple of years at six month testing before going to full yearly testing. Not sure of the regime but the chairman of our support group is now 17 years PCa free, his only treatment was open surgery.

Thanks Chris
User
Posted 22 Sep 2016 at 17:54
I would go on another holiday ๐Ÿ˜€ I think your slacking a bit you're only had about 10

So seriously from someone who follows medical advice to the letter ............ Difficult , you choose then we can have beer to celebrate
Talking of beers we are well overdue ๐Ÿ˜œ
Don't deny the diagnosis; try to defy the verdict
User
Posted 22 Sep 2016 at 18:47
Bri
as you say, only you can decide about the test. Having a test at 6m rather than waiting a whole year just means you either get assurance that all is going well or you get an early heads up that something isn't.
Only thing for certain is, if you have the test you can't make the result anything different from what it is.

Whatever you decide I continue to wish you stability.

I'm with Si time we got together for a beer and curry its ages since I saw you and Mrs Brian.
My best wishes
xxx
Mo
User
Posted 23 Sep 2016 at 00:15
Hello Bri long time no see๐Ÿ˜€
To test or not to test that is the question๐Ÿค” This is only my opinion if you don't test you are going to spend the next 6 months wondering it will always be on your mind. Testing won't change the result but will give you peace of mind and there is a lot to be said for that. So my vote is get tested..
Wondering and worrying are always worse than the reality whatever that reality might be. So go for it.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Sep 2016 at 01:25
Hi Bri,

I have thought about this carefully and decided that I would go ahead and have a six month check because I would always be wondering otherwise.

I think I've made the mistake too often of trying to avoid checking on health issues in the past, thinking that if I put it out of my mind, it will go away.

I think that if you get a good result (which it probably will be), it will boost your confidence, if not, then you might as well know so you can start to deal with it.

Whatever you decide to do, good luck and try not to worry.

Take care.

Steve
User
Posted 23 Sep 2016 at 07:50
Hi Bri, I am with Steve on this. If you leave it the chances are that in 6 months more you will be fine anyway but if you did have a rise then you would have to wait a further period for another test to see at what rate things are changing also God forbid but if it had elevated significantly then you would always look back to now and say why didn't you get one done.

The whole reason it has come to mind must be because it is on your mind so the only way to get it off your mind is to do it!

All that said , it's your call as you say.

Have a great weekend

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 23 Sep 2016 at 08:15

For what my opinion is worth - 6 months.

If there's nothing there, well you may have had another S.B.T. but you'll also have another 6 months to enjoy life to the full without that worry.

If there's something there, it will be dealt with that much sooner.

So....... one lot of S.B.T or two?

Go with what your gut tells you (or what Mrs Brian advises?)

****

We can't control the winds - but we can adjust our sails
User
Posted 23 Sep 2016 at 09:10

I would want to have a few more confidence boosting 6 monthly 0.02s "under my belt".


 


Flexi

User
Posted 25 Sep 2016 at 21:01

I tend to think raising it has answered your own question. You don't like what ifs get it tested and move on. I had a Newark meet in my diary today but heard nothing so maybe the suggestions above from Si no Mo suggests time is ripe for a beer and a meal.

User
Posted 07 Nov 2016 at 19:33

Good Luck Bri, hope the figures remain low.  I've got my fingers crossed for you too.  When do you get the results?


Not looking forward to my next PSA test, on December 1st, the first since ending HT.  Due to see the Onco for the results the day before the Flyer event, I'll need a drink or two which ever way it goes.


Take care.


Steve

User
Posted 07 Nov 2016 at 19:40
Thanks Steve... I will have to ring Weston Park later this week.

Fingers crossed for your results.

Bri
User
Posted 07 Nov 2016 at 19:48
Hope you get the best result, always rooting for you Bri

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 07 Nov 2016 at 19:58
๐Ÿ‘
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Nov 2016 at 20:32
B

Hope all is okay.

Thanks Chris
User
Posted 11 Nov 2016 at 14:05
Bri

Never good to get a rise no matter how small. As you say the technical issues may be the cause or perhaps just something you did differently. I did read that even seasonal changes can have an effect on PSA readings.

Thanks Chris
User
Posted 11 Nov 2016 at 20:56

Hi Dave, I don't think the doctors do get concerned about these tiny numbers - it is just the patients that worry about it. If Bri was being tested to 1 decimal place he wouldn't know about a rise from 0.01 to 0.02 As an aside, there are more reasons than the three you listed - a small amount of PSA is generated a breast feeding woman or one who has just had an orgasm can have a PSA of higher than Bri's!!!!

Tiny amounts of PSA can be produced in the liver or pancreas, or in breast tissue (male and female) - that's why the NHS official line is that you haven't got a confirmed recurrence unless it goes above 0.2 or you have 3 successive rises.

Bri, remember John's story for this year, rise to 0.08 then 0.09 and then a lovely drop back to 0.05 - in our case almost certainly due to St James' replacing all their machines this year.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 22 Sep 2016 at 17:16

Bri
As we've said before it's very hard to relax , whatever the outcome of your surgery or RT or HT or Bracchy or whatever. It's always with all of us who are afflicted by this blight , cured or not. You've been through the mill in more ways than one , but you know enough about PCa to realise you are now in a very good position indeed. Six months , one year ?? Would it make a great deal of difference ?? I guess it depends on your personality. I'd love to say just relax and have an entire year cancer free , but I know you're a worrier - like us all.
Do what you feel is best and it's good you got it off your chest. I know my GP really well. If I asked for a test he would prob give it. If he thought I didn't need it , he would tell me and I'd respect that.
Take care , relax :-)

User
Posted 22 Sep 2016 at 17:45
Bri

Personally I would like a couple of years at six month testing before going to full yearly testing. Not sure of the regime but the chairman of our support group is now 17 years PCa free, his only treatment was open surgery.

Thanks Chris
User
Posted 22 Sep 2016 at 17:54
I would go on another holiday ๐Ÿ˜€ I think your slacking a bit you're only had about 10

So seriously from someone who follows medical advice to the letter ............ Difficult , you choose then we can have beer to celebrate
Talking of beers we are well overdue ๐Ÿ˜œ
Don't deny the diagnosis; try to defy the verdict
User
Posted 22 Sep 2016 at 18:47
Bri
as you say, only you can decide about the test. Having a test at 6m rather than waiting a whole year just means you either get assurance that all is going well or you get an early heads up that something isn't.
Only thing for certain is, if you have the test you can't make the result anything different from what it is.

Whatever you decide I continue to wish you stability.

I'm with Si time we got together for a beer and curry its ages since I saw you and Mrs Brian.
My best wishes
xxx
Mo
User
Posted 23 Sep 2016 at 00:15
Hello Bri long time no see๐Ÿ˜€
To test or not to test that is the question๐Ÿค” This is only my opinion if you don't test you are going to spend the next 6 months wondering it will always be on your mind. Testing won't change the result but will give you peace of mind and there is a lot to be said for that. So my vote is get tested..
Wondering and worrying are always worse than the reality whatever that reality might be. So go for it.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Sep 2016 at 01:25
Hi Bri,

I have thought about this carefully and decided that I would go ahead and have a six month check because I would always be wondering otherwise.

I think I've made the mistake too often of trying to avoid checking on health issues in the past, thinking that if I put it out of my mind, it will go away.

I think that if you get a good result (which it probably will be), it will boost your confidence, if not, then you might as well know so you can start to deal with it.

Whatever you decide to do, good luck and try not to worry.

Take care.

Steve
User
Posted 23 Sep 2016 at 07:50
Hi Bri, I am with Steve on this. If you leave it the chances are that in 6 months more you will be fine anyway but if you did have a rise then you would have to wait a further period for another test to see at what rate things are changing also God forbid but if it had elevated significantly then you would always look back to now and say why didn't you get one done.

The whole reason it has come to mind must be because it is on your mind so the only way to get it off your mind is to do it!

All that said , it's your call as you say.

Have a great weekend

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 23 Sep 2016 at 08:15

For what my opinion is worth - 6 months.

If there's nothing there, well you may have had another S.B.T. but you'll also have another 6 months to enjoy life to the full without that worry.

If there's something there, it will be dealt with that much sooner.

So....... one lot of S.B.T or two?

Go with what your gut tells you (or what Mrs Brian advises?)

****

We can't control the winds - but we can adjust our sails
User
Posted 23 Sep 2016 at 09:10

I would want to have a few more confidence boosting 6 monthly 0.02s "under my belt".


 


Flexi

User
Posted 25 Sep 2016 at 21:01

I tend to think raising it has answered your own question. You don't like what ifs get it tested and move on. I had a Newark meet in my diary today but heard nothing so maybe the suggestions above from Si no Mo suggests time is ripe for a beer and a meal.

User
Posted 07 Nov 2016 at 17:38

Well I decided to go and give some blood today. It's the longest I have gone between tests i.e. 8 months.

Fingers crossed the PSA remains around the 0.01 mark

Bri

User
Posted 07 Nov 2016 at 19:33

Good Luck Bri, hope the figures remain low.  I've got my fingers crossed for you too.  When do you get the results?


Not looking forward to my next PSA test, on December 1st, the first since ending HT.  Due to see the Onco for the results the day before the Flyer event, I'll need a drink or two which ever way it goes.


Take care.


Steve

User
Posted 07 Nov 2016 at 19:40
Thanks Steve... I will have to ring Weston Park later this week.

Fingers crossed for your results.

Bri
User
Posted 07 Nov 2016 at 19:48
Hope you get the best result, always rooting for you Bri

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 07 Nov 2016 at 19:58
๐Ÿ‘
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Nov 2016 at 20:32
B

Hope all is okay.

Thanks Chris
User
Posted 10 Nov 2016 at 13:11

Good luck for your results.


 


Mark

User
Posted 10 Nov 2016 at 16:01
Good luck with your results Brian..

KRO...
User
Posted 10 Nov 2016 at 19:55

Cheers folks. The secretary isn't allowed to give me the results and the doc hasn't phoned me as promised

Bri

User
Posted 10 Nov 2016 at 21:02
It must be different at different hospitals. Ours said they test every 6 months until the 70th birthday. Then they are yearly. No idea why yearly after 70. That is after brachytherapy. But a friend had his prostate removed 17 years ago and is still on 6 monthly tests. I think I'd rather have it tested. I don't like "what if's"
User
Posted 10 Nov 2016 at 21:30

The standard NHS approach is supposed to be 6 monthly until the 5 year mark and then annual tests thereafter. But in cases where there has been a need for adjuvant or salvage treatment, the checks tend to stay more frequent so John is still on 3 monthly 7 years post op. In Bri's case the specialist gave him the option this time - annual test unless he wanted to have an interim check. 


Some will continue with the annual test under their consultant but will have additional PSAs in between times via an agreeable GP. Some consultants can't wait to get rid of patients back into the GP system - I am thinking of members here who never saw their surgeon again after the post-op check up and have only had tests and follow ups at their local practice.

Edited by member 10 Nov 2016 at 21:34  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Nov 2016 at 07:40

They actually said yearly in March 14 but I insisted on a interim test as I did this time. I don't know why they felt this was right but I haven't been overly impressed with the after care.

I don't know if you saw an old friend of mines post on FB Lyn. He had his op in January. His post op PSA was 0.04 and he has not been tested since. He sees the consultant in January. Appalling

Bri

User
Posted 11 Nov 2016 at 08:15

That's shocking :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Nov 2016 at 11:38

Our health board (Betsi Cadwaladr- N. Wales) has been in special measures for some time now, so the luxury of super-sensitive PSA tests is far too expensive. In a way this helps. I have been <0.1 ever since the LRP so, the issue of only retesting every year (when I have my normal medication review for other things) goes straight to the back of my mind - displaced by other worries of course..... *sigh*

Edited by member 11 Nov 2016 at 11:38  | Reason: Not specified

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 11 Nov 2016 at 13:44

Phoned the consultants secretary who was now able to give me the PSA results.

The result is 0.02 so it is up on the last test but still obviously very low. I am aware of the technical issues at such low levels but it does give you a "oh" moment when you hear it's higher than it has been for the last three years where it had progressively dropped.

Oh well let's see what the test in March says

Bri

User
Posted 11 Nov 2016 at 14:05
Bri

Never good to get a rise no matter how small. As you say the technical issues may be the cause or perhaps just something you did differently. I did read that even seasonal changes can have an effect on PSA readings.

Thanks Chris
User
Posted 11 Nov 2016 at 20:11

Hi Bri,


There is something I have never really understood, but I am sure there are some on this website who know the answers, hence my post.


In your case, you had RP, so logically any residual PSA can only be attributed to 3 possibilities, perhaps some health prostate cells were left in the margin when the scalpel cut out your prostate, or ditto some PCa cells were left in the margin, or prior to RP there had been some minimal spread of PCa and this is growing elsewhere in your body.


In my case I had RT, so residual PSA can be attributed to 3 similar possibilities, healthy prostate cells in what is left of the radiated prostate are growing back to life, or PCa cells within the radiated prostate are growing, or likewise some PCa cells had spread prior to RT.


Now in an untreated man, a PSA of 3, 4 or even 5 would be seen as perfectly normal and healthy.


So how come we worry about such low numbers, your PSA of 0.01 or even 0.02 is very low, lets assume that the surgeon managed to remove 99% of your prostate tissue, the residual 1% left behind might be assumed to generate PSA of 0.05 even were it perfectly healthy?


As a youth I cut my hand quite badly with a saw, what was once a vivid scar is now hardly noticeable, over time, measured in years, my body has gradually replaced the scar tissue with, for want of a better word, 'hand tissue'.  Isn't something similar happening to our prostates, or what is left of them?


Personally I would be reluctant to go back on HT or any other form of treatment until my PSA was rising quite steadily way past the range considered healthy.


But as I said, I have never really understood why the doctors are so concerned about such low PSA numbers, I guess someone can tell me?


:)


Dave  

Edited by member 11 Nov 2016 at 20:13  | Reason: Not specified

User
Posted 11 Nov 2016 at 20:44

Cheers Dave...I doubt my doctor is concerned about this very small fluctuation.

Your analysis is about right though and then throw in the theory that PSA can be generated elsewhere i.e. by other organs it probably makes sense.

But I don't subscribe to that theory though otherwise I think it would never had gone to the lowly depths of 0.01 i.e. it the other organs produce PSA it would always be slightly elevated wouldn't it.

I'm happy with a 0.02. The but though, if there is one, is that it's gone up when for the last 2.5 years it's been going down

Not worried and will just see what the PSA is in March.

Bri

User
Posted 11 Nov 2016 at 20:56

Hi Dave, I don't think the doctors do get concerned about these tiny numbers - it is just the patients that worry about it. If Bri was being tested to 1 decimal place he wouldn't know about a rise from 0.01 to 0.02 As an aside, there are more reasons than the three you listed - a small amount of PSA is generated a breast feeding woman or one who has just had an orgasm can have a PSA of higher than Bri's!!!!

Tiny amounts of PSA can be produced in the liver or pancreas, or in breast tissue (male and female) - that's why the NHS official line is that you haven't got a confirmed recurrence unless it goes above 0.2 or you have 3 successive rises.

Bri, remember John's story for this year, rise to 0.08 then 0.09 and then a lovely drop back to 0.05 - in our case almost certainly due to St James' replacing all their machines this year.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Nov 2016 at 00:03

Hi Lynn,


I always find your posts interesting and informative.


In my case, you know my history (and it is in detail on my profile), but basically I had salvage HDR Brachytherapy Feb 2015 and my last HT Nov 2015, so my PSA test of last April at 0.1 was my first one clear of HT.


At that time my consultant had set a target of no more than 0.4.


Subsequently by last June it had risen to 0.2, and Consultant decided I was doing well enough for 6 monthly tests.  Furthermore when we chatted about a target and I asked whether 0.4 remained a valid threshold, he said he wasn't sure, as so few guys have yet had the combination of treatments I had, to generate meaningful statistics. 


Like Brian, and I guess everyone, I am starting to get a little nervous as the date for next test gets nearer.


I really don't want to go back on HT, and don't really know what PSA figure to use as a threshold.  I wonder does the 0.2 figure you quote relate purely to RP?  I guess the 3 successive rises would need to be fairly close to be meaningful, say 3 monthly?


First time around after EBRT between 2011 and 2013 after coming off HT my PSA was at 3 month intervals 0.8, 0.6, 1.8, 1.4, 1.9, 2.0, 3.6, and 2.6 all of which was considered 'fingers crossed' OK.  Then in the next 3 monthly tests it went 4.9 and 6.1, at which point I went back on HT, but again that was on the houseman's advice, the main consultant later said he would be tempted to let it go higher.


So as I said, it's as clear as mud, I really have no idea where to set the threshold this time, but three consecutive rises in 6 months would seem a good rule of thumb?


:)


Dave  

User
Posted 12 Nov 2016 at 00:26

There is a difference between the point at which you and your medics accept that there is still some cancer floating about, and the point at which you go back onto treatment. The 0.2 refers only to men with no prostate; I think for men that have had EBRT / brachy etc it is 2 but I am not certain of that.

Have a look at Topgun's profile - his cancer came back about 5 years after RT and he successfully used intermittent HT for many many years. I can't remember what trigger point he used in the early days but the details will be there for you to read.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Nov 2016 at 13:39
Hi Dave
I share your thoughts entirely, I had a RP in January and went from 0.4,0.3,0.2 and now it's 0.1 .being told the figures they have given me at Hallamshire hospital are only in tenths not hundredths.but to me I believe with my current figure there's still something there, one of the urology nurses when I rang up said it's possible to have a psa of 0.1 without having any cancer cells which are produced by the Adrinal gland etc. is this true I don't know but when some are reporting figures as low as 0.001 it gets you worried so it's difficult to know what to believe and what action to take and pursue
When they get these results on your psa they should really go one step further and anylise the blood to see if they are cancer cells or not
John

Edited by member 12 Nov 2016 at 14:25  | Reason: Not specified

 
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