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psa testing anxiety- Do we ever get over it?

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User
Posted 17 Sep 2019 at 14:58

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 21:44
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 16:49
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 18:09
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.

If life gives you lemons , then make lemonade

User
Posted 17 Sep 2019 at 18:50
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.

If life gives you lemons , then make lemonade

User
Posted 17 Sep 2019 at 19:26
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 20:58

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

Edited by member 17 Sep 2019 at 20:59  | Reason: Not specified

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

User
Posted 17 Sep 2019 at 21:25

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 00:35
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 08:44

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 09:14

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 12:10
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 20:33

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 13:36
Great news. Such a relief.

If life gives you lemons , then make lemonade

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User
Posted 17 Sep 2019 at 16:49
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 18:09
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.

If life gives you lemons , then make lemonade

User
Posted 17 Sep 2019 at 18:33

  Chris J You are a inspiration and a warrior

 

Edited by member 17 Sep 2019 at 18:37  | Reason: Not specified

User
Posted 17 Sep 2019 at 18:50
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.

If life gives you lemons , then make lemonade

User
Posted 17 Sep 2019 at 19:26
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 19:41

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 19:51

I get that totally!!!!

User
Posted 17 Sep 2019 at 20:58

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

Edited by member 17 Sep 2019 at 20:59  | Reason: Not specified

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

User
Posted 17 Sep 2019 at 21:25

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 21:44
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 00:35
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 06:17

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 08:44

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 09:14

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 12:10
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 15:15

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 15:21
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 20:33

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 13:24
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

 
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