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psa testing anxiety- Do we ever get over it?

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User
Posted 17 Sep 2019 at 15:58

Well 4 months have sped by and we are now at the psa anxiety stage once more!


Bloods taken today results back on Thursday or Friday.


My Husband and I manage to get on with life in between appointments but the week of bloods and results seems to become harder and harder?


Husband is 65 Gleason 3+4 psa was 16  t2c/t3 they weren't sure so we decided HT/RT which finished last November and psa over the last 8 months have been <0.1 and 4 months later 0.2


Consultant v happy with both those so we await the 12 month psa test with no hormones or radio for almost 10 months. I will let you know the results.


Thanks for reading - I had some spare time and feel better knowing you are all there! 


Jen xx

User
Posted 17 Sep 2019 at 22:44
To be fair, I think civil servants and Ofsted/ ISI inspectors find me a bit scary as well. HTs tend to like having me on their side when there's a problem 😂
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Sep 2019 at 17:49
We are 10 years on and I think it is getting harder rather than easier!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Sep 2019 at 19:09
I’m at the lucky ??!!?? stage where I rarely worry about the psa result as it’s 190 now and only climbing. What I have instead is fear of general blood test results and six monthly bone and CT scan results. My next are due in October with Onco appt 15th Nov. Just hoping yet again I hear his words “ no evidence of metastatic disease “. That will do me just fine. I’ll take the treatment when needs be.
User
Posted 17 Sep 2019 at 19:50
I assure you I’m not , and nor am I a coward , but I remember waking up from the operation to see my smiling surgeon telling me he couldn’t see “ anything wrong at all “ with my freshly removed prostate that changed my life for the worse forever in multiple ways. And still all this time on nothing visible , even with 2 PET scans. Denial — maybe.
But I’m glad so far I’ve not spent the last 3 yrs receiving further life-changing treatment.
User
Posted 17 Sep 2019 at 20:26
For some, treatment either works well or restrains it so that may on balance consider the side effects acceptable. Unfortunately, (various) treatments don't work well for all men so some with the benefit of hindsight will wonder whether all the treatment they had or are having is worthwhile. For the vast majority of men anxiety over PSA results is normal because we are aware that increases can point the way to more treatment being necessary months or years later.
Barry
User
Posted 17 Sep 2019 at 21:58

I think Headteachers feel like that when I stand in their office  😆

Edited by member 17 Sep 2019 at 21:59  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Sep 2019 at 22:25

You're starting to sound like an Ofsted inspector now, Lynn - I wouldn't let you into my office!😀

User
Posted 18 Sep 2019 at 01:35
I get my PSA test results on my iPad the day after bloods are taken.

I must confess I start looking for them around 8 am, when they don’t usually appear until about 10 am. I have lengthened the period from three to four months now. All seven tests have been ‘undetectable’, so we live in hope.

Cheers, John.
User
Posted 18 Sep 2019 at 09:44

Originally Posted by: Online Community Member
To be fair, I think civil servants and Ofsted/ ISI inspectors find me a bit scary as well. HTs tend to like having me on their side when there's a problem 😂


We all find you a bit scary Matron, which is as it should be!

User
Posted 18 Sep 2019 at 10:14

I have had my test results within two hours when done at the hospital. Five plus years on I am getting more relaxed even though my PSA is on the rise. I now have my blood test a week before my appointment. 


Thanks Chris

User
Posted 18 Sep 2019 at 13:10
I get my PSA tests done at my GPs, a week before my oncology review. Results typically take 48h.

Cheers,

Chris
User
Posted 18 Sep 2019 at 21:33

Thankyou Jenny.  I was a bit flat after the interview and think it might have been that the nurse seemed to be doing my worrying for me. Although she was very caring. 


The best appointment I had was one where the doctor said I'd more chance of dying of a heart attack and I was doing well, which put things in perspective. 


I've had bad appointments.  One where a doctor made us both very worried with off hand comments that he thought were funny.  Bedside manner is important and your own feelings aren't always really owned by you.

User
Posted 19 Sep 2019 at 14:36
Great news. Such a relief.
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User
Posted 17 Sep 2019 at 17:49
We are 10 years on and I think it is getting harder rather than easier!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Sep 2019 at 19:09
I’m at the lucky ??!!?? stage where I rarely worry about the psa result as it’s 190 now and only climbing. What I have instead is fear of general blood test results and six monthly bone and CT scan results. My next are due in October with Onco appt 15th Nov. Just hoping yet again I hear his words “ no evidence of metastatic disease “. That will do me just fine. I’ll take the treatment when needs be.
User
Posted 17 Sep 2019 at 19:33

  Chris J You are a inspiration and a warrior


 

Edited by member 17 Sep 2019 at 19:37  | Reason: Not specified

User
Posted 17 Sep 2019 at 19:50
I assure you I’m not , and nor am I a coward , but I remember waking up from the operation to see my smiling surgeon telling me he couldn’t see “ anything wrong at all “ with my freshly removed prostate that changed my life for the worse forever in multiple ways. And still all this time on nothing visible , even with 2 PET scans. Denial — maybe.
But I’m glad so far I’ve not spent the last 3 yrs receiving further life-changing treatment.
User
Posted 17 Sep 2019 at 20:26
For some, treatment either works well or restrains it so that may on balance consider the side effects acceptable. Unfortunately, (various) treatments don't work well for all men so some with the benefit of hindsight will wonder whether all the treatment they had or are having is worthwhile. For the vast majority of men anxiety over PSA results is normal because we are aware that increases can point the way to more treatment being necessary months or years later.
Barry
User
Posted 17 Sep 2019 at 20:41

I hate it, 


 


every time I phone the GP fir results it feels like the movie Gladiator - you know, thumbs up or thumbs down........ 

User
Posted 17 Sep 2019 at 20:51

I get that totally!!!!

User
Posted 17 Sep 2019 at 21:58

I think Headteachers feel like that when I stand in their office  😆

Edited by member 17 Sep 2019 at 21:59  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Sep 2019 at 22:25

You're starting to sound like an Ofsted inspector now, Lynn - I wouldn't let you into my office!😀

User
Posted 17 Sep 2019 at 22:44
To be fair, I think civil servants and Ofsted/ ISI inspectors find me a bit scary as well. HTs tend to like having me on their side when there's a problem 😂
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Sep 2019 at 01:35
I get my PSA test results on my iPad the day after bloods are taken.

I must confess I start looking for them around 8 am, when they don’t usually appear until about 10 am. I have lengthened the period from three to four months now. All seven tests have been ‘undetectable’, so we live in hope.

Cheers, John.
User
Posted 18 Sep 2019 at 07:17

Blimey that’s a quick turnaround John! Ours is 2 sometimes 3 days which to be fair is quite quick but still an excruciating wait 🥴

User
Posted 18 Sep 2019 at 09:44

Originally Posted by: Online Community Member
To be fair, I think civil servants and Ofsted/ ISI inspectors find me a bit scary as well. HTs tend to like having me on their side when there's a problem 😂


We all find you a bit scary Matron, which is as it should be!

User
Posted 18 Sep 2019 at 10:14

I have had my test results within two hours when done at the hospital. Five plus years on I am getting more relaxed even though my PSA is on the rise. I now have my blood test a week before my appointment. 


Thanks Chris

User
Posted 18 Sep 2019 at 13:10
I get my PSA tests done at my GPs, a week before my oncology review. Results typically take 48h.

Cheers,

Chris
User
Posted 18 Sep 2019 at 16:15

The worry will remain I think but as time goes on you think it might not be as aggressive if it does come back, although it might be.


I got a new result last week and it was still <0.05 after 2yrs 9m.   About 3 weeks before the blood sample I start thinking about it but when the lady sticks the needle in my arm I seem to become optimistic, some kind of hysteria perhaps.  I then get an urge to ring the nurse for the result, as I know she'll have had it for several days before I find out.  On the results day a week later I wait for the phone call from the specialist nurse with trepidation.


This nurse wanted to keep me on 6 monthly tests after the last one said I could go on 12 months. That's fine with me.


 

User
Posted 18 Sep 2019 at 16:21
Thats great news for you Peter!
I will let you know our results when we get them end of week

Jen
User
Posted 18 Sep 2019 at 21:33

Thankyou Jenny.  I was a bit flat after the interview and think it might have been that the nurse seemed to be doing my worrying for me. Although she was very caring. 


The best appointment I had was one where the doctor said I'd more chance of dying of a heart attack and I was doing well, which put things in perspective. 


I've had bad appointments.  One where a doctor made us both very worried with off hand comments that he thought were funny.  Bedside manner is important and your own feelings aren't always really owned by you.

User
Posted 19 Sep 2019 at 14:24
Well I promised I would let you know and the results are in!
We remain at 0.2!!
A year off HT and 10 months since RT so we are delighted.

I have to admit its the first time I have cried at hearing results.

Thank you all again for being there - we go off to live life for the next 4 months and do it all again mid January but we aren't thinking about that now!
I am going to buy a bottle of wine.
xx
Jen

User
Posted 19 Sep 2019 at 14:36
Great news. Such a relief.
User
Posted 19 Sep 2019 at 14:39
Thanks Chris - I don't know why waiting for this one was worse than any of the others, but I guess coming up a year since last HT made it so important for us.
x
User
Posted 19 Sep 2019 at 17:37
Brilliant
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Feb 2020 at 14:44

Hi; Results in today...


So 18 months since Radiotherapy finished and HT stopped September 2018 (so 15 months since Hormone Therapy finished)


T2c/3a N0M0


Gleason 3+4 psa 16


Psa has been <0.1  8 weeks post Radio


0.2 May 2019


0.2 September 2019


results back today  7th February at 0.4


Is this what they call the bounce or should we be worried?


Thanks for reading


x

Edited by member 07 Feb 2020 at 15:44  | Reason: Not specified

User
Posted 07 Feb 2020 at 16:23
As you still have a prostate I believe anything up to 2 is ok provided you are not on hormone therapy
User
Posted 07 Feb 2020 at 16:24
It’s fine - it is just healthy prostate cells regenerating and creating a small amount of PSA as he recovers. As long as it stays below 2.1 you are okay.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Feb 2020 at 16:28

Thanks Both - the Nurse at the Hospital has just rung and was a touch doom and gloom which is unlike her and is going to get an appointment for us to se the consultant. I just wanted to check with you lovely bunch because we are beginning to panic??
She even talked about scans but then said you won't see anything at 0.4.


Does it fluctuate up and down quite a bit?


Thanks as ever
x

Edited by member 07 Feb 2020 at 16:51  | Reason: Not specified

User
Posted 07 Feb 2020 at 21:40
Did you remind her that your OH hasn't had surgery?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Feb 2020 at 21:53

Lyn, you are spot on, I asked my husband if he thought she got confused with the fact he hadn’t had surgery.


He said she mentioned radiotherapy : however I will report back next week when we hear from the oncologist.


thanks Lyn 


x

User
Posted 31 Mar 2020 at 18:43

I don’t think we do, well I’m not! Had my blood taken on 16 March and my consultant appointment was 24 March but was cancelled due to Coronavirus. I was told that I’d hear in due course. At the weekend my mate told me his appointment had been changed to a phone consultation. The result was still unrecordable and he’d see him in 6 months.


i phoned urology and was told my consultant has done me a letter and would see me in four months. This has left me confused and anxious, not at all sure when I will get the letter and why four months? My mind is now racing with all the permutations.


 

User
Posted 01 Apr 2020 at 03:11
I’m quite chilled regarding my PSA tests. I had extended my testing to four months rather than three, but I brought it a couple of weeks earlier because of all the malarkey over Covid 19.

I had the test last week at a local chemist, and the ‘undetectable’ <0.1 result was on my iPad Patient Access app next day.

I’m going to extend future tests to six month intervals.

Best of luck to all.

Cheers, John.
User
Posted 10 Apr 2020 at 17:18

All these people who get results sent to their iPad, back same day from chemists. Mine’s a week wait and back to the consultant. It’s now three weeks since they cancelled the appointment. I even went to the GP and they said they would print it out for me, unfortunately the hospital haven’t entered the results onto the computer. My mate whose appointment was the week after mine has had his results, same consultant too.


Ive realised it’s really getting me down. I’m becoming irritable and destructive, as I do when down. 

User
Posted 10 Apr 2020 at 17:43

Try calling the hospital urology (or oncology, whichever department) and ask for it. The clinical nurse specialists (CNS, Macmillan nurse) may give it to you.


Failing that, you could try asking your GP for a PSA test. That's what I do anyway.

User
Posted 10 Apr 2020 at 18:09
That's what I would do as well .... ask for a new PSA test from the GP. Worth checking though which lab the GP uses and whether that is the same one as your consultant. There may be small variations from one lab to another.

Do you live in an area where there are very high numbers of COVID cases? That is likely to affect how quickly they can get your PSA results.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Apr 2020 at 18:11
I’d second the advice to get your PSA test done at your GP’s. I had my latest test done by the nurse at my GP’s practice at 9:30am this Thursday; the result was up on the online system at 6:20pm the same day.

Best wishes,

Chris
User
Posted 10 Apr 2020 at 19:54

The test is done at the GPs but the results go to the consultant and by the look of it the hospital enters it onto my records. I tried ringing urology but I got put through to someone in a different department at a different hospital, due to COVID I believe. She made me feel awful for having called.


The Macmillan CNS is a waste of space. None of who had our operation done on the same day have used her. She never there, never answers calls. We found out afterwards our ward was 10’ from her office, did she introduce herself?


You May get the impression I have no faith in my NHS trust. I used to work at a large trust in a big city nearby, a work colleague lived in the same trust area as me, she said if she ever needed to call an ambulance she would drag her family member up the road so that they could get away from our nhs.

 
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