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Does it get easier

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User
Posted 15 Jan 2015 at 22:59
I'm approaching my 3rd PSA test since finishing my adjuvant RT in September 2013. I am on 6 monthly tests which I have never been sure about. But I have started becoming twitchy about this one quite early...I'm not going for it until the end of February. I'm usually ok until a week or so before but this one is bothering me now.

Is this the norm as time passes between radical treatments and tests

Cheers

Bri

User
Posted 16 Jan 2015 at 18:56

Bad boy, no more black humor. xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 16 Jan 2015 at 05:59
Hi Brian, I think you would be rare to not worry about tests like these. I know I am still a newby but my wife and I have a regular disagreement and ( as ever ) she is probably 90% right. She says, if I wake up and feel ok then today is a good day and I say what about tomorrow/ next month/ year. When you read this if you are ok then it's gonna be ok today! Don't waste a month worrying about the tests which will no doubt be ok in any case. Some recent posts here can make you think of the darkest side of where we are, it is right that we never forget in so many ways but that should not be at the expense of our precious lives either. Luv ya Bri and I smile every time I see your name for those who do not understand! TODAY IS A GOOD DAY!

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 17 Jan 2015 at 17:53

Hello Bri
Does it get easier?
Hasn't for me yet, in the time after a consultation and the next test I can usually ignore my cancer but the dead time between the test and the consultation (usually about 2 weeks for me) is hard.
Good luck for your next one

User
Posted 16 Jan 2015 at 14:55

It doesn't really matter whether you avoid things or not as long as you either a) stay consistent and try to behave the same way each time you are to be tested or b) remember to take into consideration that your PSA could vary by as much as 10% depending on the activity. So if you have sex or ride your bike the day before a PSA test, and then the result is 0.11 rather than 0.10 as it was last time, then you can say "oh, that's probably because I had sex" rather than go into a panic of what ifs. Clearly, at these tiny amounts, 10% variance could simply be machine noise but for men up at the higher end of containment, 44 is much scarier than 40.

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

User
Posted 16 Jan 2015 at 17:49

No advice will stop you worrying Bri, we know that, don't we!! But try and project what you would advise others to do. Worrying will not change things nor hurry up the result. So my suggestion would be to park it somewhere in the deep recesses of your mind, buy a ticket for Newark and we will help you forget it.

Strangely I do not worry about the result before the day of the appointment and then only when I have received the result. I suppose for me there feels an inevitability of PSA rise over time so I let the medics worry about it. So when I have a test I don't feel I need to chase up the result until I have my meeting, partly as interpreting what it means without the medic probably induces more worry. But I know we are all different!

User
Posted 16 Jan 2015 at 19:31
Bri

Can completely relate to your post. I too get quite worked up leading up to getting PSA results, so you are not alone.

Wishing you all the best with your test in February.

User
Posted 17 Jan 2015 at 10:05

Bri

Does it get easier? 10 years on I’m at the point of not asking reception what my results are as it can wait until I have a GP review for other issues. I’m not certain if that’s because it does get easier with time or I want to keep most likely bad news away from my door as long as possible.

Perhaps a positive way of looking at being concerned is it makes sure you keep your eye on the ball and it reminds today is what matters – enjoy it the best you can.

Ray

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User
Posted 16 Jan 2015 at 00:49
Hi Bri

Doesn't get any easier does it, I have as you know just had my PSA results last week and for the first time I was S******g myself even though I was expecting a rise, but to what extent bothered me quite a bit, so you are not alone as I suspect we are not the only ones affected by the uncertainty. I suspect you will be ok as long as you realise the RT is still working and doing its magic, and the longer it takes to achieve your Nadir the better the outcome. Don't forget to expect the PSA bounce that sometimes happens as it can be a worry if you are not aware of it.

Good Luck

Roy

User
Posted 16 Jan 2015 at 01:55

We are finding it gets a little worse each time. Not my dad though - he assures us it gets easier and he got to a stage where he didn't bother ringing for the results because he just expected they would be fine again - that worked for 13 years :-)

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

User
Posted 16 Jan 2015 at 05:59
Hi Brian, I think you would be rare to not worry about tests like these. I know I am still a newby but my wife and I have a regular disagreement and ( as ever ) she is probably 90% right. She says, if I wake up and feel ok then today is a good day and I say what about tomorrow/ next month/ year. When you read this if you are ok then it's gonna be ok today! Don't waste a month worrying about the tests which will no doubt be ok in any case. Some recent posts here can make you think of the darkest side of where we are, it is right that we never forget in so many ways but that should not be at the expense of our precious lives either. Luv ya Bri and I smile every time I see your name for those who do not understand! TODAY IS A GOOD DAY!

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 16 Jan 2015 at 10:27

 

 

 

Edited by member 16 Jan 2015 at 10:29  | Reason: Not specified

User
Posted 16 Jan 2015 at 11:49

Brachytherapy done on June 3rd. Seen the consultant one since then (I think it was once) who decided on the camera.
So saw somebody that day.
Had an appointment booked for 18th February. Not bothered at all since it was par for the course.

Now though, I am not at all happy since we have just received a letter cancelling the February appointment and another given one for May.

John still laid back about it but to shut me up has agreed to go to the GP around the Feb appointment time and ask for another PSA. Not sure if he'll do it as they were sniffy last time and that was one ordered by the hospital.

Phoned John's nurses for advice but no response (also appears to be par for the course).

 

In fact feel abandoned and not for the first time.

 

Because the procedure was done out of our area we are supposed to be under "Shared care".  Not much of that about !

Edited by member 16 Jan 2015 at 11:51  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 16 Jan 2015 at 12:03

Hi Bri,

I'm just a 'beginner' at all this and have only had  2 PSA  test results post RP to date......

I was extremely nervous prior to my first post op PSA result which was given at the review and histology report with my consultant.


Having to wait for 8 weeks not knowing what they had found ( or not found ) in the pathology lab was the worst thing  for me...

I'm currently on 4 monthly test intervals....

My 2nd PSA test and review was not so bad, but I still got anxious about a week before.


I've been very fortunate so far in as much as 'things' have gone pretty much to plan,

( apart from the usual side effects associated with a RP )   I'm well aware that things  could change at any time the future.

I guess regular tests are something we all have to learn to live with, but there will always be that element of uncertainty every time a test result is due.


Good Luck with your PSA result in Feb

Best Wishes

Luther

Edited by member 16 Jan 2015 at 12:29  | Reason: Not specified

User
Posted 16 Jan 2015 at 13:24

Hi

 

Prior to being diagnosed with PCa and Radical prostate removal I was advised to avoid certain activities like ejaculation prior to PSA testing. Does the same apply post OP or post RT bearing in mind that with RT and some prostate removals not all the prostate is actually removed.

 

Thanks Chris

 

Edited by member 16 Jan 2015 at 13:25  | Reason: Not specified

User
Posted 16 Jan 2015 at 14:55

It doesn't really matter whether you avoid things or not as long as you either a) stay consistent and try to behave the same way each time you are to be tested or b) remember to take into consideration that your PSA could vary by as much as 10% depending on the activity. So if you have sex or ride your bike the day before a PSA test, and then the result is 0.11 rather than 0.10 as it was last time, then you can say "oh, that's probably because I had sex" rather than go into a panic of what ifs. Clearly, at these tiny amounts, 10% variance could simply be machine noise but for men up at the higher end of containment, 44 is much scarier than 40.

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

User
Posted 16 Jan 2015 at 17:32

Many thanks guys....I think I will follow Kev and Mrs Irun's advice :)

Today is a good (ish) day.

Chris if I could ejaculate I would avoid it prior to the test;-)

Thanks for all your wishes and advice, it's much appreciated

Bri

User
Posted 16 Jan 2015 at 17:49

No advice will stop you worrying Bri, we know that, don't we!! But try and project what you would advise others to do. Worrying will not change things nor hurry up the result. So my suggestion would be to park it somewhere in the deep recesses of your mind, buy a ticket for Newark and we will help you forget it.

Strangely I do not worry about the result before the day of the appointment and then only when I have received the result. I suppose for me there feels an inevitability of PSA rise over time so I let the medics worry about it. So when I have a test I don't feel I need to chase up the result until I have my meeting, partly as interpreting what it means without the medic probably induces more worry. But I know we are all different!

User
Posted 16 Jan 2015 at 18:11
Yep agree with Paul get you A**e down to Newark

If you read the replys on my post I might be brown bread soon 😂 and then for 5 minutes you will regret never coming

Come on you know you want too

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 16 Jan 2015 at 18:43

Dear God Si!!!! What kind of a post is THAT?

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

User
Posted 16 Jan 2015 at 18:56

Bad boy, no more black humor. xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 16 Jan 2015 at 19:31
Bri

Can completely relate to your post. I too get quite worked up leading up to getting PSA results, so you are not alone.

Wishing you all the best with your test in February.

User
Posted 16 Jan 2015 at 22:54

 It's what we call "squeaky bum time" http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

 

It's all relative though. My PSA has been in the thousands for a while (now 1001) but dropping into the hundreds is a big deal. To have my PSA after RT or RP would be a total disaster http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif. All is relative. I have no doubt my PSA will climb next month but the powers that be have refused me Enzalutamide on the grounds that I had tried Abiraterone, even though it was only a few months and didn't work at all http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif.

 

Am I annoyed?

 

Watch this space ...... http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Edited by member 16 Jan 2015 at 22:54  | Reason: Not specified

Nil desperandum

Allister

User
Posted 16 Jan 2015 at 23:45

I take it you are mobilising the troops Allister? All those links you have made and consultation groups you have given so much time to must surely be helpful in some way? Also, those that have covered your story in the media at different times?

Is it possible to buy Enza?

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

User
Posted 17 Jan 2015 at 09:50

Dont know about annoyed but I would be very angry in your position Allister.

Bri

User
Posted 17 Jan 2015 at 10:05

Bri

Does it get easier? 10 years on I’m at the point of not asking reception what my results are as it can wait until I have a GP review for other issues. I’m not certain if that’s because it does get easier with time or I want to keep most likely bad news away from my door as long as possible.

Perhaps a positive way of looking at being concerned is it makes sure you keep your eye on the ball and it reminds today is what matters – enjoy it the best you can.

Ray

User
Posted 17 Jan 2015 at 17:53

Hello Bri
Does it get easier?
Hasn't for me yet, in the time after a consultation and the next test I can usually ignore my cancer but the dead time between the test and the consultation (usually about 2 weeks for me) is hard.
Good luck for your next one

 
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