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User
Posted 18 Feb 2016 at 10:32

Hi Guys,

In various posts and private messages I have recently been criticised, perhaps correctly, for being arrogant, patronising and unfeeling. So I thought it might help if I confess all and let you know where I am coming from. 

Following initial diagnosis, at my first appointment with my Consultant he stressed that my PCa was probably too advanced for curative treatment. I can’t remember his exact words but the inference was that I was clearly in the camp of those likely to die of PCa, it was a shame it hadn’t been detected earlier, as his task would have been easier.

I thought if only I had had a PSA test earlier, early diagnosis would have guaranteed a cure.

I joined my local support group, who were at that time actively promoting PSA testing and hosting PSA test evenings. I was an enthusiastic committee member, attending all sorts of events, persuading hundreds of men to have PSA tests. 

But as the years passed and I read more and more, I discovered that the issue wasn’t quite as simple as I had thought. My local group had moved onto other things like fund raising for our hospitals brachytherapy suite, and I was able to focus my efforts on that.

However by last year it was clear that the majority of our group wished to resume PSA test evenings, inviting hundreds of men, free of any symptoms, to have PSA tests. So I started reading once again to see what if anything had changed. 

Everywhere I looked the consensus was that PSA testing of asymptomatic men was unwise, this website’s host charity PCUK does not support it, neither does the NHS, or Cancer Research UK, I found the same abroad, the Canadian Government Health Taskforce specifically saying PSA screening ‘does more harm than good’.

Perhaps most colourful was Dr Richard Ablin, the American credited with discovering PSA who says ‘…as the test is hardly more effective than a coin toss…’ adding ‘…48 men would need to be treated to save one life. That’s 47 men who, in all likelihood, can no longer function sexually or stay out of the bathroom for long.’

I was talking about this with friends, men who I had advised to have their PSA tested, and are now impotent and incontinent as a result. I was told that if they had known then what they know now they probably wouldn’t have had a PSA test.

So if on this website I occasionally respond to some newly diagnosed guy, with a low Gleason score, and suggest he thinks twice before jumping to a quick decision about radical treatment, it is because I feel guilty for all the harm I have done in the past.

:)

Dave

User
Posted 18 Feb 2016 at 10:32

Hi Guys,

In various posts and private messages I have recently been criticised, perhaps correctly, for being arrogant, patronising and unfeeling. So I thought it might help if I confess all and let you know where I am coming from. 

Following initial diagnosis, at my first appointment with my Consultant he stressed that my PCa was probably too advanced for curative treatment. I can’t remember his exact words but the inference was that I was clearly in the camp of those likely to die of PCa, it was a shame it hadn’t been detected earlier, as his task would have been easier.

I thought if only I had had a PSA test earlier, early diagnosis would have guaranteed a cure.

I joined my local support group, who were at that time actively promoting PSA testing and hosting PSA test evenings. I was an enthusiastic committee member, attending all sorts of events, persuading hundreds of men to have PSA tests. 

But as the years passed and I read more and more, I discovered that the issue wasn’t quite as simple as I had thought. My local group had moved onto other things like fund raising for our hospitals brachytherapy suite, and I was able to focus my efforts on that.

However by last year it was clear that the majority of our group wished to resume PSA test evenings, inviting hundreds of men, free of any symptoms, to have PSA tests. So I started reading once again to see what if anything had changed. 

Everywhere I looked the consensus was that PSA testing of asymptomatic men was unwise, this website’s host charity PCUK does not support it, neither does the NHS, or Cancer Research UK, I found the same abroad, the Canadian Government Health Taskforce specifically saying PSA screening ‘does more harm than good’.

Perhaps most colourful was Dr Richard Ablin, the American credited with discovering PSA who says ‘…as the test is hardly more effective than a coin toss…’ adding ‘…48 men would need to be treated to save one life. That’s 47 men who, in all likelihood, can no longer function sexually or stay out of the bathroom for long.’

I was talking about this with friends, men who I had advised to have their PSA tested, and are now impotent and incontinent as a result. I was told that if they had known then what they know now they probably wouldn’t have had a PSA test.

So if on this website I occasionally respond to some newly diagnosed guy, with a low Gleason score, and suggest he thinks twice before jumping to a quick decision about radical treatment, it is because I feel guilty for all the harm I have done in the past.

:)

Dave

User
Posted 18 Feb 2016 at 12:56

Well Dave, you are fully entitled to your opinion and provided it isn't expressed in an aggressive, confrontational manner with a view to actually putting the cat among the pigeons (ie winding people up deliberately) why feel the need to apologise or explain.

There will always be people who misunderstand and perhaps reply more sharply than they needed to, which then results in a sharp reply by others who have a different view.

I feel very strongly that you are wrong to apologise for any "harm" you may have caused. You based your reckoning on what had happened to you and perhaps others in the same boat. For some of those you left open to harm, how many took the suggestion and were perhaps able to avoid a diagnosis of incurable. You may never know about that.

Chris, you wish you'd never had the PSA (and given the way treatment has left you I do understand that feeling) but in your case you did have cancer so maybe you would not have been able to ignore it since the PSA rose so rapidly. It's much harder for you to deal with because of the bi-polar I know.
There isn't anything any of us can say to make it better for you. You are speaking from hindsight, which is a wonderful thing. You know from reading on here that many men having the same treatment will react differently. You were very unfortunate in your results.

You say it is unbearable for you and I really really feel for you. How unbearable would it have been for your wife and little son to have lost you too soon.

You give a lot back to us, both of you, so never feel that you shouldn't have said this or that. If it's how you're feeling then that's what matters.

We can't control the winds - but we can adjust our sails
User
Posted 20 Feb 2016 at 21:58

Hi Dave,

 

You said

"In various posts and private messages I have recently been criticised, perhaps correctly, for being arrogant, patronising and unfeeling."

 

I nearly spluttered a cup of tea over my keyboard on reading that because nothing could be further from the truth.

In all the years I've known you, you have done everything to kindly help and advise members on here.

 

You really should not feel the need to apologise.

I think people can be often totally unaware of all the work done quietly, such as answering emails from worried guys and/or their partners, which is in addition to posting replies on the forums.

This goes on unnoticed every day, and on top of that help given, there is yet another side - the support work done in our local groups.

 

Carry on as always Dave,

You're a good guy!

 

 

George

 

By the way, I'm not a fan of the Private Message system here either. I've now read too many disturbing comments about it.

 

 

B2PCa
User
Posted 18 Feb 2016 at 13:34

Hi Dave,

   I was about to start a new thread but your posting resonates with me so without trying to hijack your thread, I'll post here.

My title was going to be 'PSA Complacency'

I thought it was unique to me but a recently I've discovered that a friend has the same outlook and it perturbs me.

The story is this; about eight years ago I presented the usual symptoms to the doc and he sent me for a PSA which came back as PSA 5.(something) .

 Upshot was that I was giving some prostate shrinking tablets which made not the slightest difference, and that was that.

This is where the mind-set kicks in. Surely I had been cleared of having Prostate Cancer? - Great! another potential cause of death I can tick-off.

I hadn't a clue about PSA levels; 5.(?) seemed such a tiny figure, I'm sure that subconsciously I eagerly embraced the thought that these symptoms came with the being-old territory (62-ish then) and something I would have to live with.

I felt that could put the thought of PCa out of my mind forever.

Of course it didn't work out like that, in my ignorance I thought that my continuing, and in fact worsening, symptoms were there to stay.

 Another five years elapsed before I went to a doctor and was sent for a biopsy and even then such was my thinking caused by my PSA complacency that I didn't really go with the possibility of having cancer.

 I can't help but feel that had I followed though and had a PSA test again after a shorter interval, I would be in a better position that I am in now (although I regard it as a case of 'what's done is done' so I don't dwell upon it)

I can't blame my ignorance and attitude on the state- it's down to me. But I do feel that education is more important than mass screening. Or at least the two should go hand-in-hand.

Ideally, in my opinion, Mr Average should be advised about PSA levels and perhaps even Gleason scores before even seeing the GP, and that if you have one negative PSA test, you should be thinking about your next one and don't get complacent and/or resigned to the symptoms.

 

Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 18 Feb 2016 at 19:00
Dave

I am with you on this one, when a reliable test or combination of tests is available, one/s which indicates the presence of cancer but also the severity of it, then that will be a completely different picture. In the meantime it is a Man's right if he chooses to ask for a PSA test at any age if he has symptoms or if he has a familial history. The guidelines are available to every GP but how they then interpret them is another matter.

Money from cancer charities is being allocated to cancer research facilities to come up with this, by all accounts there are a few possibilities showing well in early tests. The most promising seem to be ones using commonly identified bio markers from positive PCa samples. These are generally protein based and can be detected in urine samples or blood tests. I really hope they will not be as uncomfortable or embarassing as the one Chris J underwent.

The PM facility on the forum can be annoying if you get seomeone like we did last weekend, it is optional and you can opt out of it, or if you are strong minded enough you just ignore or discard any rubbish ones. A short messsage to PCUK moderators can also be used if they really do get nasty. I personally remember a series of incredibky vitriolic and downright hateful messages which were sent, sadly some were to our late great special one Topgun at a time when he was fighting for his own life. They are not always from trolls either.

Dave you give a huge amount of knowledgeable and well researched support to members here, you have absolutely no need to apologise to anyone.

my very best wishes

xxx

Mo

User
Posted 18 Feb 2016 at 20:13

Dave,
With respect, I think the point is being missed here. The PSA test is not a treatment. It only requires a sample of blood. A better indicator for PCa would undoubtedly reduce the number of biopsies and scans which are in themselves costly and can sometimes lead to infection in some cases. However, the main argument that many men suffer unnecessary harm is because of the treatment they have, not for the PSA test which is wrongly blamed. Even a 100% reliable cancer test would not stop damage and side effects from treatment. Radical treatment is not given unless established by biopsy and or scan.

Nobody who has a PSA test and usually a DRE, needs to take the next step which if cancer is suspected is usually for the man to have a biopsy, although it is becoming accepted that an MRI and then a biopsy is the better order. Again the man is free to choose whether he wishes to have treatment, if offered or be monitored. Men can be advised but it is down to the individual how he wishes to proceed. So by suggesting men have a PSA you are making them aware, not advocating treatment.

Most regrettably, for some men treatment does not cure their cancer and indeed just leaves them with severe side effects. Naturally, in hindsight, men so affected are most likely to regret having treatment. But some are cured by treatment or the progression of their cancer is slowed and such men are on balance glad they took the gamble, because that is what it is.

So don't be sorry for suggesting men consider having a PSA test thereby empowering them to decide on treatment if recommended. I certainly wish somebody had suggested a PSA test earlier to me - my cancer might then have been treated earlier with a better chance of cure. As it is, I am having various treatments to slow the cancer.

There is some interesting information on this site about Consultation with GP and PSA  and the News section is well worth looking at for other topics. http://www.pcrmp.org.uk/Debate/Kirby_2009_04_10.pdf

 

Edited by member 18 Feb 2016 at 20:41  | Reason: Not specified

Barry
User
Posted 18 Feb 2016 at 14:11
Dave,

You should not feel guilty at all. In fact I think that you have acted only as I would have done.

When I was diagnosed several of my friends also went for testing and came back with good results. They thanked me for drawing it to their attention.

I am 58 now. When I was 53 I had a Psa test. The score was 7.5. My then GP carried out a DRE and said she didn't know what to do as the prostate felt enlarged.

She did not refer me.

I did not have any of the usual symptoms re nocturnia etc. But on reflection maybe I had ed problems but was then too embarrassed to talk about them ( no longer am).

At 57 when I saw another GP for something else, I asked if I should have a follow up Psa test. I then knew a couple of friends on active surveillance .

He shrugged his shoulders and said he did not believe in them . When he looked at my notes and saw 7.5 he said " well you might as well then".

Result Psa 33.5.

And immediate referral.

And if I'd hadn't insisted ?????

(I now have an excellent GP.)

So T3a Gleason 7 , too late for RP - 37 RT and HT ongoing.

My wife has said sometimes she wishes I'd never had the test but I know she doesn't really mean that.

Now my brother, 11 years older than me, refuses to have the Psa test. He worked as a GP practice manager and his wife was practice nurse there.

They say it's not worth the hassle. Test results inclusive and cause needless worry.

That's their choice even though a first degree relative has PCa.

Of course I wish I wasn't going through this .Sometimes it's been hell. But at least I may have a chance of survival.

And I won't be kicking myself for not having been tested.

But for those tested but who are clear and left in another way as you mentioned ,then they might not agree with my views.

It's difficult to say what I'd think if I was in their shoes.

We need more reliable testing. Until that comes then this discussion will continue.

Thanks,

John

User
Posted 18 Feb 2016 at 16:42

Dave the thing I find sad is that you have been called these names. In my view, the private messaging facility is toxic, dangerous and the biggest mistake that PCUK ever made. I try not to look in my inbox because I probably won't like the messages!

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

User
Posted 18 Feb 2016 at 16:53

Hi Dave, does anyone know anymore about the EN2 protein test being developed by a Surrey University? Apparently it has been trialed on 77,000 people over 5 years and has been 90%successful in detecting tumours which is twice the success rate of PSA tests (on a good day)

What happens is your GP tests your urine sample and can have the result in minutes and will only cost the NHS £10.

If this is correct surely the powers that be should be making this available ASAP. I know it has to go before all the various committees and boards for approval but it would be safer than PSA testing as the protein will only show if there is a tumour so an enlarged prostate would not show, making it less worrying for men generally and gives a fast result if there is a positive test.

I know in my case I went to the GP with constant weeing at night with the end result being a PSA test that was 63 then bone scan, MRI scan followed by targeted biopsy and Gleason score 3+4=7 and told I had aggressive cancer but was confined to the prostate.

Only treatment offered was HT and RT as my prostate was too close to my rectum wall and they advised no surgery.

As it happens I am happy with my treatment plan and just before RT my PSA had dropped to 0.5 and two weeks ago PSA 0.01 ( undetectable) yes John you have a target to acheive

Personally I hope the new test is approved and then it will take away the for and against PSA arguments that I find difficult to know who is right and who is wrong, as it is only a viewpoint and people have to make their own minds up.

It will take away the worry from those that have an enlarged prostate that will know straight away that they do not have Cancer and for those with a positive result it will mean that treatment starts sooner, got to be a win win situation?

I am sure there is more to say about this and there will be more info come to light.

Anyway for now best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

Edited by member 18 Feb 2016 at 17:00  | Reason: Not specified

User
Posted 18 Feb 2016 at 17:09

Hi Chris
I was part of a trial for a new test in Sept '14 . It was looking at a protein in urine . However it could only be done after I was forced to excrete semen via a DRE . That is , I had the DRE which both feels the prostate and expels fluid into the uretha. Then I had to urinate to pass the sample into the tube . I was told they think this may be a more reliable test , but many many men will not have a DRE , whereas they will have a blood test . So swings and roundabouts ?
Chris

User
Posted 18 Feb 2016 at 17:55
Mr Chris Puffingbilly ( Chris is popular name),

It's good to know that new tests are being developed and let's hope the med profession can find one that they all approve of and trust.

Thanks for the reminder re my score (!) and for your PMs last night - ( I see that Lyn is not a fan of them ) - btw tooth fixed @£32!

John

User
Posted 18 Feb 2016 at 18:19

Lyn Eyre + PM + inbox = winter flu bug ( or equivalent ) .
I send her one every now and again just to wind her up .

User
Posted 18 Feb 2016 at 18:23

Hi Dave
You are apologising for trying to help people.I only wish there was more like you
I am one of the lucky ones diagnosed early
As you know when first diagnosed I sent you a PM and you kindly replied.
You gave me information,helped put things into perspective,realised there is life after PC
"I have got cancer, cancer has not got me"
Your advice helped me come to a desicion which I believe was right for me
You didn't come on saying oh you are doing this wrong you ought to be doing this
No you gave me the information to help me make my own mind up.For which I will be forever grateful
Do not allow a few people stop you helping the many.
Remember when you give people the information and advice they do not have to act upon it so why they are having a go at you is beyond me.You cannot blame someone else for your own descisions
Again Dave many thanks DLTBGYD

Garry

Edited by member 18 Feb 2016 at 18:25  | Reason: Not specified

User
Posted 18 Feb 2016 at 20:26

Two different tests being discussed in one thread ....

Sounds like ChrisJ was taking part in a trial of PCA3 - which had been trialled before but only with a very small pool of men. Then they started a bigger trial but I have lost track of where it is up to now.

The EN2 test was first launched in 2011 with the belief that it would be available to all 18 months later. In 2013 it was licensed with an announcement that it would be widely available within 18 - 24 months. We are still waiting. What was interesting about the EN2 trials, but doesn't always get reported in the press, was that it was identified as a more reliable test for men who have a genetic PCa ie men with BRCA 1/2 The fact that it was subsequently reported as more reliable than PSA doesn't make clear whether that is ALL men or just the original target group. As less than 10% of men are thought to have BRCA-linked PCa, it might not be as widely helpful as first thought. The other thing that wasn't reported in the press last year - but had been clear in the research papers published by Surrey University - was that EN2 would best be used in conjunction with a PSA test and DRE not instead of.

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

User
Posted 18 Feb 2016 at 21:56

Maybe Woody although my personal view is that too many reporters lack the intelligence to read the detail and understand it, let alone reproduce it in bitesize chunks for general consumption

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

User
Posted 19 Feb 2016 at 05:02

Dave I agree totally with Barry comments.

You have spread the word about PCa and helped men to get a test. I am aware of two men who have been diagnosed with PCa since I started banging the drum. At first I felt a strange sense of guilt about their dx....but they were so happy for it to have been caught early which gives them a chance.

Whether men go on to have treatment is a matter only they can decide upon . But it's up to their medical teams to give them all the information for them to be able to make a well informed decision.

I am in two minds about a screening programme but I do think people need educating and unfortunately this applies to a significant number of GP's.

Keep posting and keep spreading the word

Bri

Show Most Thanked Posts
User
Posted 18 Feb 2016 at 11:27

Hi Dave
You have been a great help to me off and on since my diagnosis , and I thank you for that , whatever your views.
For what it's worth I wish I'd never had a PSA test. No symptoms to be honest but now left with a " saved life " that isn't actually saved at all and is quite frankly unbearable for someone with mental health issues such as mine.
My brother is 50 and a fully qualified Doctor , yet despite what has happened to me won't have a test. I can hardly say I blame him. Keep posting and don't feed a troll mate
Chris

User
Posted 18 Feb 2016 at 12:56

Well Dave, you are fully entitled to your opinion and provided it isn't expressed in an aggressive, confrontational manner with a view to actually putting the cat among the pigeons (ie winding people up deliberately) why feel the need to apologise or explain.

There will always be people who misunderstand and perhaps reply more sharply than they needed to, which then results in a sharp reply by others who have a different view.

I feel very strongly that you are wrong to apologise for any "harm" you may have caused. You based your reckoning on what had happened to you and perhaps others in the same boat. For some of those you left open to harm, how many took the suggestion and were perhaps able to avoid a diagnosis of incurable. You may never know about that.

Chris, you wish you'd never had the PSA (and given the way treatment has left you I do understand that feeling) but in your case you did have cancer so maybe you would not have been able to ignore it since the PSA rose so rapidly. It's much harder for you to deal with because of the bi-polar I know.
There isn't anything any of us can say to make it better for you. You are speaking from hindsight, which is a wonderful thing. You know from reading on here that many men having the same treatment will react differently. You were very unfortunate in your results.

You say it is unbearable for you and I really really feel for you. How unbearable would it have been for your wife and little son to have lost you too soon.

You give a lot back to us, both of you, so never feel that you shouldn't have said this or that. If it's how you're feeling then that's what matters.

We can't control the winds - but we can adjust our sails
User
Posted 18 Feb 2016 at 13:34

Hi Dave,

   I was about to start a new thread but your posting resonates with me so without trying to hijack your thread, I'll post here.

My title was going to be 'PSA Complacency'

I thought it was unique to me but a recently I've discovered that a friend has the same outlook and it perturbs me.

The story is this; about eight years ago I presented the usual symptoms to the doc and he sent me for a PSA which came back as PSA 5.(something) .

 Upshot was that I was giving some prostate shrinking tablets which made not the slightest difference, and that was that.

This is where the mind-set kicks in. Surely I had been cleared of having Prostate Cancer? - Great! another potential cause of death I can tick-off.

I hadn't a clue about PSA levels; 5.(?) seemed such a tiny figure, I'm sure that subconsciously I eagerly embraced the thought that these symptoms came with the being-old territory (62-ish then) and something I would have to live with.

I felt that could put the thought of PCa out of my mind forever.

Of course it didn't work out like that, in my ignorance I thought that my continuing, and in fact worsening, symptoms were there to stay.

 Another five years elapsed before I went to a doctor and was sent for a biopsy and even then such was my thinking caused by my PSA complacency that I didn't really go with the possibility of having cancer.

 I can't help but feel that had I followed though and had a PSA test again after a shorter interval, I would be in a better position that I am in now (although I regard it as a case of 'what's done is done' so I don't dwell upon it)

I can't blame my ignorance and attitude on the state- it's down to me. But I do feel that education is more important than mass screening. Or at least the two should go hand-in-hand.

Ideally, in my opinion, Mr Average should be advised about PSA levels and perhaps even Gleason scores before even seeing the GP, and that if you have one negative PSA test, you should be thinking about your next one and don't get complacent and/or resigned to the symptoms.

 

Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 18 Feb 2016 at 14:11
Dave,

You should not feel guilty at all. In fact I think that you have acted only as I would have done.

When I was diagnosed several of my friends also went for testing and came back with good results. They thanked me for drawing it to their attention.

I am 58 now. When I was 53 I had a Psa test. The score was 7.5. My then GP carried out a DRE and said she didn't know what to do as the prostate felt enlarged.

She did not refer me.

I did not have any of the usual symptoms re nocturnia etc. But on reflection maybe I had ed problems but was then too embarrassed to talk about them ( no longer am).

At 57 when I saw another GP for something else, I asked if I should have a follow up Psa test. I then knew a couple of friends on active surveillance .

He shrugged his shoulders and said he did not believe in them . When he looked at my notes and saw 7.5 he said " well you might as well then".

Result Psa 33.5.

And immediate referral.

And if I'd hadn't insisted ?????

(I now have an excellent GP.)

So T3a Gleason 7 , too late for RP - 37 RT and HT ongoing.

My wife has said sometimes she wishes I'd never had the test but I know she doesn't really mean that.

Now my brother, 11 years older than me, refuses to have the Psa test. He worked as a GP practice manager and his wife was practice nurse there.

They say it's not worth the hassle. Test results inclusive and cause needless worry.

That's their choice even though a first degree relative has PCa.

Of course I wish I wasn't going through this .Sometimes it's been hell. But at least I may have a chance of survival.

And I won't be kicking myself for not having been tested.

But for those tested but who are clear and left in another way as you mentioned ,then they might not agree with my views.

It's difficult to say what I'd think if I was in their shoes.

We need more reliable testing. Until that comes then this discussion will continue.

Thanks,

John

User
Posted 18 Feb 2016 at 16:42

Dave the thing I find sad is that you have been called these names. In my view, the private messaging facility is toxic, dangerous and the biggest mistake that PCUK ever made. I try not to look in my inbox because I probably won't like the messages!

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

User
Posted 18 Feb 2016 at 16:53

Hi Dave, does anyone know anymore about the EN2 protein test being developed by a Surrey University? Apparently it has been trialed on 77,000 people over 5 years and has been 90%successful in detecting tumours which is twice the success rate of PSA tests (on a good day)

What happens is your GP tests your urine sample and can have the result in minutes and will only cost the NHS £10.

If this is correct surely the powers that be should be making this available ASAP. I know it has to go before all the various committees and boards for approval but it would be safer than PSA testing as the protein will only show if there is a tumour so an enlarged prostate would not show, making it less worrying for men generally and gives a fast result if there is a positive test.

I know in my case I went to the GP with constant weeing at night with the end result being a PSA test that was 63 then bone scan, MRI scan followed by targeted biopsy and Gleason score 3+4=7 and told I had aggressive cancer but was confined to the prostate.

Only treatment offered was HT and RT as my prostate was too close to my rectum wall and they advised no surgery.

As it happens I am happy with my treatment plan and just before RT my PSA had dropped to 0.5 and two weeks ago PSA 0.01 ( undetectable) yes John you have a target to acheive

Personally I hope the new test is approved and then it will take away the for and against PSA arguments that I find difficult to know who is right and who is wrong, as it is only a viewpoint and people have to make their own minds up.

It will take away the worry from those that have an enlarged prostate that will know straight away that they do not have Cancer and for those with a positive result it will mean that treatment starts sooner, got to be a win win situation?

I am sure there is more to say about this and there will be more info come to light.

Anyway for now best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

Edited by member 18 Feb 2016 at 17:00  | Reason: Not specified

User
Posted 18 Feb 2016 at 17:09

Hi Chris
I was part of a trial for a new test in Sept '14 . It was looking at a protein in urine . However it could only be done after I was forced to excrete semen via a DRE . That is , I had the DRE which both feels the prostate and expels fluid into the uretha. Then I had to urinate to pass the sample into the tube . I was told they think this may be a more reliable test , but many many men will not have a DRE , whereas they will have a blood test . So swings and roundabouts ?
Chris

User
Posted 18 Feb 2016 at 17:25

I was interested to see this on my local news a few days ago... maybe in time there will eventually be a reliable test for PCa.

As I understand things the main problem at present is distinguishing the 'pussy cats' from the 'tigers' and thus avoiding unnecessary treatment for many with 'pussy cats' ?


http://www.bristolpost.co.uk/Bristol-researchers-create-new-prostate-cancer/story-28717946-detail/story.html

User
Posted 18 Feb 2016 at 17:52

Hi Luther, have just read the link and it sounds good but how long before it gets trialed properly or end up being used to its full extent?

Probably a bit like the EN2 test we will have to keep waiting to see if or when..

Chris, it seems like an extreme torture to me if that's what you had to endure. Perhaps it was a similar trial maybe it was a new way of getting a sample!

If you google search EN2 prostate cancer test, it will bring up a Daily Telegraph story from last year with most of the essential details.

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 18 Feb 2016 at 17:55
Mr Chris Puffingbilly ( Chris is popular name),

It's good to know that new tests are being developed and let's hope the med profession can find one that they all approve of and trust.

Thanks for the reminder re my score (!) and for your PMs last night - ( I see that Lyn is not a fan of them ) - btw tooth fixed @£32!

John

User
Posted 18 Feb 2016 at 18:19

Lyn Eyre + PM + inbox = winter flu bug ( or equivalent ) .
I send her one every now and again just to wind her up .

User
Posted 18 Feb 2016 at 18:23

Hi Dave
You are apologising for trying to help people.I only wish there was more like you
I am one of the lucky ones diagnosed early
As you know when first diagnosed I sent you a PM and you kindly replied.
You gave me information,helped put things into perspective,realised there is life after PC
"I have got cancer, cancer has not got me"
Your advice helped me come to a desicion which I believe was right for me
You didn't come on saying oh you are doing this wrong you ought to be doing this
No you gave me the information to help me make my own mind up.For which I will be forever grateful
Do not allow a few people stop you helping the many.
Remember when you give people the information and advice they do not have to act upon it so why they are having a go at you is beyond me.You cannot blame someone else for your own descisions
Again Dave many thanks DLTBGYD

Garry

Edited by member 18 Feb 2016 at 18:25  | Reason: Not specified

User
Posted 18 Feb 2016 at 19:00
Dave

I am with you on this one, when a reliable test or combination of tests is available, one/s which indicates the presence of cancer but also the severity of it, then that will be a completely different picture. In the meantime it is a Man's right if he chooses to ask for a PSA test at any age if he has symptoms or if he has a familial history. The guidelines are available to every GP but how they then interpret them is another matter.

Money from cancer charities is being allocated to cancer research facilities to come up with this, by all accounts there are a few possibilities showing well in early tests. The most promising seem to be ones using commonly identified bio markers from positive PCa samples. These are generally protein based and can be detected in urine samples or blood tests. I really hope they will not be as uncomfortable or embarassing as the one Chris J underwent.

The PM facility on the forum can be annoying if you get seomeone like we did last weekend, it is optional and you can opt out of it, or if you are strong minded enough you just ignore or discard any rubbish ones. A short messsage to PCUK moderators can also be used if they really do get nasty. I personally remember a series of incredibky vitriolic and downright hateful messages which were sent, sadly some were to our late great special one Topgun at a time when he was fighting for his own life. They are not always from trolls either.

Dave you give a huge amount of knowledgeable and well researched support to members here, you have absolutely no need to apologise to anyone.

my very best wishes

xxx

Mo

User
Posted 18 Feb 2016 at 20:13

Dave,
With respect, I think the point is being missed here. The PSA test is not a treatment. It only requires a sample of blood. A better indicator for PCa would undoubtedly reduce the number of biopsies and scans which are in themselves costly and can sometimes lead to infection in some cases. However, the main argument that many men suffer unnecessary harm is because of the treatment they have, not for the PSA test which is wrongly blamed. Even a 100% reliable cancer test would not stop damage and side effects from treatment. Radical treatment is not given unless established by biopsy and or scan.

Nobody who has a PSA test and usually a DRE, needs to take the next step which if cancer is suspected is usually for the man to have a biopsy, although it is becoming accepted that an MRI and then a biopsy is the better order. Again the man is free to choose whether he wishes to have treatment, if offered or be monitored. Men can be advised but it is down to the individual how he wishes to proceed. So by suggesting men have a PSA you are making them aware, not advocating treatment.

Most regrettably, for some men treatment does not cure their cancer and indeed just leaves them with severe side effects. Naturally, in hindsight, men so affected are most likely to regret having treatment. But some are cured by treatment or the progression of their cancer is slowed and such men are on balance glad they took the gamble, because that is what it is.

So don't be sorry for suggesting men consider having a PSA test thereby empowering them to decide on treatment if recommended. I certainly wish somebody had suggested a PSA test earlier to me - my cancer might then have been treated earlier with a better chance of cure. As it is, I am having various treatments to slow the cancer.

There is some interesting information on this site about Consultation with GP and PSA  and the News section is well worth looking at for other topics. http://www.pcrmp.org.uk/Debate/Kirby_2009_04_10.pdf

 

Edited by member 18 Feb 2016 at 20:41  | Reason: Not specified

Barry
User
Posted 18 Feb 2016 at 20:26

Two different tests being discussed in one thread ....

Sounds like ChrisJ was taking part in a trial of PCA3 - which had been trialled before but only with a very small pool of men. Then they started a bigger trial but I have lost track of where it is up to now.

The EN2 test was first launched in 2011 with the belief that it would be available to all 18 months later. In 2013 it was licensed with an announcement that it would be widely available within 18 - 24 months. We are still waiting. What was interesting about the EN2 trials, but doesn't always get reported in the press, was that it was identified as a more reliable test for men who have a genetic PCa ie men with BRCA 1/2 The fact that it was subsequently reported as more reliable than PSA doesn't make clear whether that is ALL men or just the original target group. As less than 10% of men are thought to have BRCA-linked PCa, it might not be as widely helpful as first thought. The other thing that wasn't reported in the press last year - but had been clear in the research papers published by Surrey University - was that EN2 would best be used in conjunction with a PSA test and DRE not instead of.

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

User
Posted 18 Feb 2016 at 21:16
Man with PC.

Thanks for an excellent post. I think it confirms my own views re the positivity of testing.

But then look at what happened to me 5 years ago. I wasn't referred when I should have been.

Perhaps better GP training is required , but having said that my own ( new) Doc has been on a PCa course this year.

I wasn't aware of this site when I was dx . I only came to it in the latter stages of RT.

In a way I was glad I didn't know too much about what I could expect re treatments etc other than shown in the toolkits.

Told I had stage 2 , then 'upgraded to stage 3 at first Onco appt. ,I would have been very disappointed if I'd really wanted RP but couldn't.

So let a man have a Psa test and then see where it goes from there.

John

User
Posted 18 Feb 2016 at 21:48

Thanks Lyn, as usual you come up with the necessary facts to set the record straight, it is a good job we can rely on you to get it right.
Maybe in time to come there will be a balance between all three tests and a way forward that will be a good outcome in PCa diagnosis which is what we all want.

Anything that gets reported should be as correct as it can be and not doctored to fit in with the edit of the press, perhaps the reporter that read through the press release chose not to include details that minimised the impact of the potential of finding an early diagnosis of "cancer" rather than only a particular type of cancer.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 18 Feb 2016 at 21:56

Maybe Woody although my personal view is that too many reporters lack the intelligence to read the detail and understand it, let alone reproduce it in bitesize chunks for general consumption

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

User
Posted 19 Feb 2016 at 00:33

Hi Guys,

Thank you for you kind words and support.

:)

Dave

 

User
Posted 19 Feb 2016 at 05:02

Dave I agree totally with Barry comments.

You have spread the word about PCa and helped men to get a test. I am aware of two men who have been diagnosed with PCa since I started banging the drum. At first I felt a strange sense of guilt about their dx....but they were so happy for it to have been caught early which gives them a chance.

Whether men go on to have treatment is a matter only they can decide upon . But it's up to their medical teams to give them all the information for them to be able to make a well informed decision.

I am in two minds about a screening programme but I do think people need educating and unfortunately this applies to a significant number of GP's.

Keep posting and keep spreading the word

Bri

User
Posted 19 Feb 2016 at 22:41
Hi Dave ,

It was just one disturbed poster and I have my own theory as to who that was ( but and you know I love a but one bad apple as the saying goes ).You have got a lot of support on here so please don't feel that you have got to justify yourself by apologising, you have nothing to apologise for.

We all have our seperate opinions and views , as long as it comes from the heart what does it matter right or wrong.

Oh dear the PSA testing debate will probably go on , well it will go until a more reliable test is developed. I was a bit like you in the beginning , everyone should have a PSA test banging the drum and trying to shout it from the rooftops. Then I calmed down and actually looked at the stats and like you thought just how many men would be having treatment that they didn't need.

But and here I go with my but any test for any kind of cancer doesn't tell you if it is a pussy cat or a tiger, I am just going to name a few but there are so many others, cervical cancer the smear test only says that there are abnormal cells it is not until invasive tests are done that a dx or an all clear can be confirmed. Worst case scenario a woman can't have children actually scrap that comment , worst case scenario is mother of two dies of cervical cancer.

Breast cancer on a mammogram can only be confirmed with a biopsy .

Yes I do understand that some treatments for PCa are horrendous BUT honestly I have never heard of a case were there was no cancer found. Maybe I am looking at things too simplistically. I will take all view points on board.

So national screening would get my vote, along with bowel, breast, and cervical there is probably others that I am not aware of they get my vote as well.

I vote for life and yes if those who want to opt out then they don't have to have any more treatment, no one forces treatment . We all make choices in life.

We can all sit here banging the drum ( if only there was a different test for PCa) well no there isn't this is the only one that we have at the moment. Choose it or loose it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Feb 2016 at 21:58

Hi Dave,

 

You said

"In various posts and private messages I have recently been criticised, perhaps correctly, for being arrogant, patronising and unfeeling."

 

I nearly spluttered a cup of tea over my keyboard on reading that because nothing could be further from the truth.

In all the years I've known you, you have done everything to kindly help and advise members on here.

 

You really should not feel the need to apologise.

I think people can be often totally unaware of all the work done quietly, such as answering emails from worried guys and/or their partners, which is in addition to posting replies on the forums.

This goes on unnoticed every day, and on top of that help given, there is yet another side - the support work done in our local groups.

 

Carry on as always Dave,

You're a good guy!

 

 

George

 

By the way, I'm not a fan of the Private Message system here either. I've now read too many disturbing comments about it.

 

 

B2PCa
User
Posted 09 Mar 2016 at 17:57

Hope it's not too late to reply.

I had a PSA test as my father has had PCA for about 18 years and was recently diagnosed with secondary cancer in the bones and his GP believes in his brain. I was confident that the PSA test would come back OK, but told my GP that I was uncertain if I would have treatment even if it was high, as I was aware of the side effects. Unfortunately, it came back as 11.5, but a DRE showed the prostate as normal. I am having a scan this Saturday and then a biopsy; the type of biopsy will depend on the results of the scan.

So I don't consider posts about not having treatment as inappropriate as it might be the best course of action to take.

User
Posted 09 Mar 2016 at 18:35
Never too late to reply. Good to have your input.

I hope all goes well for you all.

John

 
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