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So angry about PSA test

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User
Posted 09 Nov 2016 at 17:07
I know this isn't helpful and I need to get over it but I've just got to get out my anger over the PSA testing.

My husband went to his GP to ask for a test four years ago when he was 58. This was because his father had died of prostate cancer (although after 15 years do not particularly aggressive.)

Despite the family history and the fact that he is black (higher risk for Prostate Cancer) he was persuaded not to have the test because 'you have no symptoms and if can cause more problems than it solves.'

So I am so angry that A/ instead of giving that advice the health professional didn't say 'yes - good idea.'

B/ that my husband didn't ignore them and say he wanted the test anyway.

C/ (and this is much stronger than any of the others) that I didn't send him back to get the test. I am normally very proactive about things for us as a family and I feel that I have let him and our sons down so badly.

User
Posted 09 Nov 2016 at 18:05

sallyyy,

When we moved to Devon in March 2012 as part of the signing on with the new GP the nurse asked if she could test my PSA. The result 2.86, lovely jubbly. Fast forward to December and I'm having a problem I consult the GP about. After some scans, nothing found and I suggest to the GP that my PSA is tested, note he didn't suggest it. He says "your last PSA doesn't indicate any problems, leave it till April and we'll test it then". April test result 5.48, oh foook. GP does a DRE and says all feels OK but refers me to Urology. Two weeks later, Urologist does a DRE and says "I think you've got PCa and I think it has spread outside of the prostate".

Have I had one or two bad thoughts about that GP? Yes. Have I let them go? Yes. I am where I am.

You need to let it go sallyyy or it will destroy you. Look forward, not back.

David

User
Posted 09 Nov 2016 at 17:47

Sally, we can all do this and no it is not helpful or rational. Even if he had had the test 4 years ago it could have come back as normal or your OH could have decided not to agree to a biopsy or the biopsy could have come back clear (they weren't doing MRI prior to biopsy so much at that time and for all you know he may not have had PCa then so you could still have been in the same position now. The temptation is to look back and pinpoint a moment or decision and then convince ourselves that things from then on would have happened a certain way but of course they probably would have been just as random as that moment.

For my part if i am in a self blaming mode i beat myself up for using a microwave oven for many years and for feeding him so many ready meals with processed meat. But a bit of me knows that he might still have got cancer.

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

User
Posted 09 Nov 2016 at 17:54

I do hope you now have a different GP. To refuse a test to a 59 year old man when every man over 50 should take the blood test - so simple and cheap to do - borders on the medically negligent. I got into this thing because I worried that my ED was a side effect of hypertension drugs. It wasn't and unfortunately my GP (since retired, good riddance) believed that the PSA test produced so many false positives (or was it negatives?) that it had no value.He had stopped testing me years before (another lost opportunity). I probably lost six to nine months potential treatment at a relatively early stage as a result of his blinkered approach and my lack of knowledge of PCa. Still, as you say, it does no good to be angry about past errors. The important thing is to be positive about getting the future right!

Best wishes
AC in Northants

User
Posted 09 Nov 2016 at 19:56

The attitude of GP's varies on PSA. I had no symptoms other than needing to have a pee more often than some which had been the case for some years and the subject of a previous examination (tube and camera through penis). I was put on Tamsulosin for the sphincter valve which was deemed to be the cause of the problem. So no thought of PCa. Fast forward to 2007 and my GP wanting a blood test for an entirely different problem I have. He said, almost in passing, that he thought it would be worth adding a PSA test to the blood tests. I don't think he detailed what this was for or might lead to or perhaps I cut him short because i said something like "well I won't be getting the sample back so do what you like with it". (I knew absolutely nothing about PSA or PCa the time so didn't understand the significance). The result was a PSA of 17.6 and the start of my PCa journey which only started at that point due to my proactive GP. This is the main reason for me joining those advocating men be offered the PSA test at 50 or earlier if they are more at risk. Some GP's and non medical people are opposed to this because this can lead to treatment which in many cases would not have been necessary because in many cases PCa will not be a problem if left untreated, also widespread treatment would impose an unsustainable demand on the medical staff and equipment in the NHS along with attendant costs.

I, and I am sure that many that have been diagnosed with PCa wish we had been aware of PCa earlier, so that it could be treated in a timely way when there was a better chance of cure. GP's and men need to be better educated about tests, treatment and consequences. PCa is much more in the news these days andthis charity has promoted awareness by an advertising programme and other ways but the message doesn't always get through or is ignored.

Barry
User
Posted 09 Nov 2016 at 21:17
Sally - I had to phone my brother last night and tell him that I have just been diagnosed with PCa. I then had to tell him to go to the GP for a DRE and PSA test. I'm 46 and he is 48. Anyway, he had his DRE today and GPnsaid it was fine. PSA test tomorrow. I was so glad to hear that the GP agreed to it without protest.

I'm sorry to hear about your experience but others seem to have shared a lot of wisdom in their responses whic I hope will lighten your burden in some way.

Walter

User
Posted 09 Nov 2016 at 21:38
Oh Sally,

I so get where you are coming from Trevor also black ( just in case you hadn't noticed from our avatar ) was misdiagnosed for around 18 months not that I think it would have changed our outcome in fact I know it wouldn't because he had probably had pca for a very long time before he was diagnosed but it would have helped just to feel that we were being listened to.

Trevor had been going backwards and forwards to our GP for at least 18 months with various symptoms and it wasn't until he could barely walk that finally a Dr said hey let's do a PSA test and as they say the rest is history . PSA came back at 13000 .

It made me angry for such a long time , Afro Caribbean man over 60 , problems with his walking and water works it doesn't take the brains of an Arch Bishop but hey they said it was fibromyalgia, I knew that was not right.

We have since learnt that 3 of his half brothers have also had pca . Gps are not infallible but hey at what point did 3 separate gps not pick up on it.

Yes I blame myself also because I am generally on the ball with most things but I believed the it's an old mans diseaese story and am know so pro active in getting the message out there to young black men who are probably the hardest to target that they are 3 times more likely to get this disease and at even higher risk if they have a family member affected.

Trevor has 5 sons who I hammer regularly 😊

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 09 Nov 2016 at 17:47

Sally, we can all do this and no it is not helpful or rational. Even if he had had the test 4 years ago it could have come back as normal or your OH could have decided not to agree to a biopsy or the biopsy could have come back clear (they weren't doing MRI prior to biopsy so much at that time and for all you know he may not have had PCa then so you could still have been in the same position now. The temptation is to look back and pinpoint a moment or decision and then convince ourselves that things from then on would have happened a certain way but of course they probably would have been just as random as that moment.

For my part if i am in a self blaming mode i beat myself up for using a microwave oven for many years and for feeding him so many ready meals with processed meat. But a bit of me knows that he might still have got cancer.

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

User
Posted 09 Nov 2016 at 17:54

I do hope you now have a different GP. To refuse a test to a 59 year old man when every man over 50 should take the blood test - so simple and cheap to do - borders on the medically negligent. I got into this thing because I worried that my ED was a side effect of hypertension drugs. It wasn't and unfortunately my GP (since retired, good riddance) believed that the PSA test produced so many false positives (or was it negatives?) that it had no value.He had stopped testing me years before (another lost opportunity). I probably lost six to nine months potential treatment at a relatively early stage as a result of his blinkered approach and my lack of knowledge of PCa. Still, as you say, it does no good to be angry about past errors. The important thing is to be positive about getting the future right!

Best wishes
AC in Northants

User
Posted 09 Nov 2016 at 18:05

sallyyy,

When we moved to Devon in March 2012 as part of the signing on with the new GP the nurse asked if she could test my PSA. The result 2.86, lovely jubbly. Fast forward to December and I'm having a problem I consult the GP about. After some scans, nothing found and I suggest to the GP that my PSA is tested, note he didn't suggest it. He says "your last PSA doesn't indicate any problems, leave it till April and we'll test it then". April test result 5.48, oh foook. GP does a DRE and says all feels OK but refers me to Urology. Two weeks later, Urologist does a DRE and says "I think you've got PCa and I think it has spread outside of the prostate".

Have I had one or two bad thoughts about that GP? Yes. Have I let them go? Yes. I am where I am.

You need to let it go sallyyy or it will destroy you. Look forward, not back.

David

User
Posted 09 Nov 2016 at 18:49
Thank you all so much. I know I need to let it go and concentrate on supporting him now x
User
Posted 09 Nov 2016 at 19:23

Very maddening though. There is still so much ignorance out there about this disease ggrr

Bri

User
Posted 09 Nov 2016 at 19:56

The attitude of GP's varies on PSA. I had no symptoms other than needing to have a pee more often than some which had been the case for some years and the subject of a previous examination (tube and camera through penis). I was put on Tamsulosin for the sphincter valve which was deemed to be the cause of the problem. So no thought of PCa. Fast forward to 2007 and my GP wanting a blood test for an entirely different problem I have. He said, almost in passing, that he thought it would be worth adding a PSA test to the blood tests. I don't think he detailed what this was for or might lead to or perhaps I cut him short because i said something like "well I won't be getting the sample back so do what you like with it". (I knew absolutely nothing about PSA or PCa the time so didn't understand the significance). The result was a PSA of 17.6 and the start of my PCa journey which only started at that point due to my proactive GP. This is the main reason for me joining those advocating men be offered the PSA test at 50 or earlier if they are more at risk. Some GP's and non medical people are opposed to this because this can lead to treatment which in many cases would not have been necessary because in many cases PCa will not be a problem if left untreated, also widespread treatment would impose an unsustainable demand on the medical staff and equipment in the NHS along with attendant costs.

I, and I am sure that many that have been diagnosed with PCa wish we had been aware of PCa earlier, so that it could be treated in a timely way when there was a better chance of cure. GP's and men need to be better educated about tests, treatment and consequences. PCa is much more in the news these days andthis charity has promoted awareness by an advertising programme and other ways but the message doesn't always get through or is ignored.

Barry
User
Posted 09 Nov 2016 at 21:17
Sally - I had to phone my brother last night and tell him that I have just been diagnosed with PCa. I then had to tell him to go to the GP for a DRE and PSA test. I'm 46 and he is 48. Anyway, he had his DRE today and GPnsaid it was fine. PSA test tomorrow. I was so glad to hear that the GP agreed to it without protest.

I'm sorry to hear about your experience but others seem to have shared a lot of wisdom in their responses whic I hope will lighten your burden in some way.

Walter

User
Posted 09 Nov 2016 at 21:38
Oh Sally,

I so get where you are coming from Trevor also black ( just in case you hadn't noticed from our avatar ) was misdiagnosed for around 18 months not that I think it would have changed our outcome in fact I know it wouldn't because he had probably had pca for a very long time before he was diagnosed but it would have helped just to feel that we were being listened to.

Trevor had been going backwards and forwards to our GP for at least 18 months with various symptoms and it wasn't until he could barely walk that finally a Dr said hey let's do a PSA test and as they say the rest is history . PSA came back at 13000 .

It made me angry for such a long time , Afro Caribbean man over 60 , problems with his walking and water works it doesn't take the brains of an Arch Bishop but hey they said it was fibromyalgia, I knew that was not right.

We have since learnt that 3 of his half brothers have also had pca . Gps are not infallible but hey at what point did 3 separate gps not pick up on it.

Yes I blame myself also because I am generally on the ball with most things but I believed the it's an old mans diseaese story and am know so pro active in getting the message out there to young black men who are probably the hardest to target that they are 3 times more likely to get this disease and at even higher risk if they have a family member affected.

Trevor has 5 sons who I hammer regularly 😊

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 Nov 2016 at 21:58
Yes Julie I will make sure our sons and nephews all get the message loud and clear.
User
Posted 10 Nov 2016 at 12:34

Hi Sally

Fully understand.  I actually had 3 GP's as moved (see my profile if you need more background info) and only told about PSA many years back by a friend.

All the very best

 

Incidentally,  were you told about UKGPCS study ?

See criteria at

: http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-looking-at-the-genetic-causes-of-prostate-cancer-uk-genetic-prostate-cancer-study#undefined

 

You individually will get zero back (ie its not a gene testing service ) however I was told about it my our Hosp.  They sent mouth swab,  and I filled in family history charts. I thought this all helps future generations.   You can email their coordinator at UKGPCS if any queries .   There is also an optional very comprehensive document to complete - re. lifestyle etc etc .   The rest doesn't take too long, although in my case I did send off for grandparent death certs, and discovered  dads mum had died of Bowel Cancer (which I didn't know) 

Lyn response is spot on, you can't 'what - if', you make the best informed decision at the time. 

Gordon  

 

User
Posted 10 Nov 2016 at 16:36
Hi Gordon yes we have been told about that and my husband is keen to be involved to help protect future generations including our sons and nephews.
 
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