Petition for National Prostate Cancer Screening Started - - Page 2Get involved with Prostate Cancer UK

User

Posted 25 Aug 2015 at 08:55

Sadly I think some folk have misinterpreted the context of some posts here.

If I thought a "Screening by PSA test" programme was viable or achievable I would be with you 100%

I have tried to explain why. It is not so much about the unnecessary treatment and SEs for men in the marginal diagnosis and much more about the target audience which if introduced could preclude men under 50 being tested. Medical data is now suggesting that men in a high risk group under 50 who sadly do get PCa, as we all know, are more likely to go undetected as they remain asymptomatic for so much longer. They also tend to have a higher incidence of a faster developing and more aggressive cancer so if they do not get "screened" beacuse of this age rule what options are there for them?

If you are really interested in this debate read the following booklet (it is avaiable on the internet as a PDF file) Prostate Cancer Risk Management Programme PSA testing in asymptomatic Men by Deborah Burford, Michael Kirby and John Austoker and sponsored by Cancer research UK.

This specifically referes to Men aged 50+ in the latest (2009) edition. This is the current guidance book for Clinicians.

I am led to believe that a revised edition is due later this year or in early 2016 and that it will almost certainly bring the figure down to age 40+ and include data relevant for the 40 -50 sector. I do not think the view on a national screening programme will change unless there is a very significant breakthrough in medical research before then.

I applaud those that post articles on their FB, twitter,and other scoial media pages, I do regularly too and yes these do get the attention of other friends and friends of friends. So raising the profile through Awareness is hugely beneficial. I have already had 2 friends who have tested positive for PCa one is currently on AS by choice and the other is about to undergo an open RP (also his choice) Neither would have been included in the screening programme as they are both under 50 but both went and asked for tests because of what happened to my Husband and beacuse of their own family history. One did have to be pretty insistent so I do understand that some GPs do try to put men off.

We all need to promote using the options that are available, I have chosen to focus my energy on that. I do not judge those that wish to pursue the screening campaign so please do not judge me or others for having a different opinion.

all the best as always

User

Posted 25 Aug 2015 at 09:14

Originally Posted by: Online Community Member

A different piece of research (post mortems on all men who died unexpectedly of any cause) showed that 60% of men in their 60s, 70% of men in their 70s and 80% of men in their 80s had some cancer in their prostate. If we assume 8 million men aged 50 - 69, that's 5.2 million men who would be diagnosed by a screening test. The government will never allow it as the NHS would crumple - there would be insufficient clinic or theatre time, not enough urologists, radiologists, oncos, ED nurses ...

This highlights the main problem, statistically most of the men with cancer in the prostate in their 60s must go on to be part of the 80% in their 80s. So it seems top me that whilst cancer is present in the majority of men in their sixties it does not require treatment.

The problem is not detecting cancer, but determining which cancers need to be treated. As has been said many times separating the tigers from the pussy cats.

Personally I have been on Active Surveillance for almost 3 years, and so far have shown no sign of any progression. Sometimes I think it would have been better if I had never been tested and carried on without knowing, but most of the time I am glad that I am being monitored, knowing that progression will be detected quickly and the necessary action taken.

I am 100% in favour of a screening programme, but realise that this will not be possible until a suitable test is available

Alan

User

Posted 25 Aug 2015 at 12:03

Kev do not give up on your petition it does not matter what others think or facts and figures , if this gives you a focus to do something and may help one person it will be worth it . all the best Andy

User

Posted 25 Aug 2015 at 15:11

The Charity that hosts this forum aims to raise awareness of PCa. Those of us that have it are of course already well aware. So the target must be men who have not been diagnosed but might have PCa. What message does the Charity send out? Is it only that men should be encouraged to see a GP and ask for a PSA test if they have symptoms? This would mean many men who don't have symptoms but actually have PCa, would feel it did not apply to them and might miss the opportunity of a timely PSA test and possibly early curative treatment. Moderators read posts and it would be interesting to know where they stand on question of adopting National Screening.

Unfortunately, I believe there is very little chance of National screening being adopted because if for no other reason than the Government would see it as too costly and placing an unsustainable demand on NHS resources. This is reasonable short term thinking and any such programme would have to be phased in over time. What should also be taken into account is that many men who are are not diagnosed early go on to require continuing treatment and/or drugs for many years which is also costly and time consuming for the medical profession. If most men were diagnosed and treated early more of them would be cured and not need so much expensive follow up. Outcomes for a number of cancers are worse in the UK than in many European countries, one of the main reasons is said to be late diagnosis.

So generally the Government thinks short term and immediate cost but when it decides it wants to do something it can find 'ways and means'. There was no problem in giving a thorough examination to all men of 18+ with few exemptions on suitability for National Service when we had conscription. This picked up some problems, one I had sorted as a result but not PCa certainly.

Barry

User

Posted 25 Aug 2015 at 16:49

PCUK has already made a public statement - they don't support national screening based on the PSA test and would like to see a more reliable test developed.

http://prostatecanceruk.org/about-us/news-and-views/2014/8/prostate-cancer-uk-comments-on-findings-of-lancet-study-which-recommends-that-psa-screening-programmes-should-not-be-introduced-at-this-time

Edited by member 25 Aug 2015 at 16:50 | Reason: Not specified

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

User

Posted 25 Aug 2015 at 19:21

Lynn you are becoming Mrs negative let Kev do his petition

User

Posted 25 Aug 2015 at 20:08

I'm neither arguing for or against national screening.

I was getting a PSA test and DRE as part of my annual company medical without it highlighting a problem, right up until I retired so a screening programme would not have benefitted me.

What would have, would have been better awareness on my part.

I went to the GP with the usual flow problems about seven years ago. My PSA was 5.(something) the figure was meaningless to me as I assumed 5 was pretty low.

But as the GP wasn't worried, I wasn't. I assumed that meant that it was another serious illness that I could discount having.

I became complacent and assumed that my symptoms came with advancing age and I would have to put up with them.

I should have realised (a) the significance of the 5.? and realised a PSA test is not a 2once and for all' test and continued having an annual check

Instead, I waited five years before reporting again to the GP with flow problems- by which time my PSA had risen to 8.?

I guess the answer might be better education of potential patients as well as GPs.

Dave

Edited by member 26 Aug 2015 at 00:56 | Reason: Not specified

Not "Why Me?" but "Why Not Me"?

User

Posted 25 Aug 2015 at 21:54

Originally Posted by: Online Community Member

Lynn you are becoming Mrs negative let Kev do his petition

I was responding to ManwithPC's question on where PCUK stand on this. I am not usually negative but I find naivety frustrating - there are so many things that we (and the charity) could be doing like raising NICE and the politicians' awareness that so many GPs are ignoring the agreed protocols. Every time I hear of another man being refused a test I want to weep. It isn't just PCa - overall, brain tumour patients have to visit the GP with symptoms three times before they get referred for a brain scan.

What I don't get is how lots of people with slightly differently worded petitions can make a difference. We have 4 or 5 threads just on this forum from people campaigning for nearly the same thing. Why can't there be just one petition that everyone who wants screening signs? As it is, the politicians must just look at them all and think 'well if the campaigners can't agree what they want, we can't do anything'

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

User

Posted 25 Aug 2015 at 23:45

I don't normally get involved in discussions like this as I know how they can escalate into heated comments, but this time I think being one of the men who was refused a PSA test at 57 because I was to young to have cancer, as it was an old mans disease I feel compelled to comment.

For years I was called by my practice annually to undergo blood tests deemed necessary by NICE which never included PSA. If this was done I would not be in the position I am now, I know I am not the only one to have this happen to them , and if I could do anything to prevent it I would, so we'll done for trying Kev.

I know the PSA test is not ideal, but it is all we have at the moment, it is not the test which is at fault it is the experts interpretation of those results. How many more men have to die of this before someone takes a stand?, how may is too many? 1,10,100,1000,10000, answers on a postcard please, I know my answer.

If we are at odds to what the wording should be then maybe PCUK could take this fight up on our behalf with the wording we as members agree to.

I believe that since screening was scrapped in the USA the incidence of people presenting with advanced PCa has significantly increased, I would suggest this tells a story that men will not get tested until they have symptoms which for many are to late.

GPs will not routinely offer PSA checks until they are required and paid for by the government, GP practices are businesses and are run like a business.

Roy

User

Posted 26 Aug 2015 at 14:28

Well done Kev just checked and your petition has gone past the ten thousand mark and is going at a pace. Andy

User

Posted 27 Aug 2015 at 22:31

Lyn puts her views forthrightly and with a lot of experience of cancer, unfortunately much of it within her family. Furthermore, these opinions accord with those of, what I would for convenience collectively call 'the establishment', apparently even Prostate Cancer UK, (thanks for link). Most of the facts are agreed all round, such as the great cost and human resources that wide-scale testing and much treatment thereafter would require, needless anxiety that false positives causes and potential over-treatment to men. It is how these facts are weighed and considered where there are differences of opinion.

As I have previously intimated, if the Government decided testing was the way to go, they could bring it in on a phased basis if there was the will. But they will not do so when the balance of professional advice is against it. This is largely because some men are already what is considered as being over-treated and more would be so if all men of 50 were PSA tested and some of these treated. However, no man is forced to have a PSA test and subsequent treatment now and would not be forced to do so with voluntary National screening. They would be advised before the initial PSA test that it gave false positives and negatives and that treatment had risks and potential side effects. Furthermore, they would be told that some of them would have treatment that might be unnecessary as their respective cancers might never develop to the point where it became a problem. So to save some men being over-treated, other men who without symptoms but possibility with cancer at various stages, are not being encouraged to be screened and may suffer premature death as a result. (To what extent over-treatment would have to be reduced I wonder before this was considered an acceptable risk?) But regardless of this, the present system is not logical anyway, because as I understand it, a man of 50 without symptoms can get his GP or another to authorize a PSA test which may lead to treatment in just the same way as if he had been encouraged to have the PSA test as National screening. The only difference is one of scale. But let us suppose that all the increased publicity and awareness about PCa led to a huge increase in men of 50 without symptoms, as well as those with symptoms or at increased risk deciding they wanted a PSA test, the effect would be very similar to general screening anyway, yet the over-treatment risk remain the the same.

I referred previously to the Great PSA debate. This took place in November 2009 where leading cancer Professionals argued the case for and against screening. This is a very interesting analysis of the meeting and I would suggest worth reading and noting how the votes were http://loveyourprostate.co.uk/wp-content/uploads/downloads/2010/11/The-Great-PSA-Debate-Q-Analysis.pdf

Edited by member 27 Jul 2020 at 02:53 | Reason: Not specified

Barry

User

Posted 28 Aug 2015 at 16:31

I wish you well with your petition Kev,which i have signed,i only wish that my husband who has advanced metatastic prostate cancer had been been tested earlier.

Kat

User

Posted 28 Aug 2015 at 16:46

It's far better to be diagnosed wrongly and have a bit of worry for a short time than not have it discovered and end up like Kev and me and hundreds of others. It should be like breast screening for women, offered throughout the NHS. I fought hard to have PSA screening for men in the Company I worked for, that already offered breast screening for women. I bet LynEyres isn't so negative about breast screening. Dead easy to dismiss matters that don't affect you!

Edited by member 28 Aug 2015 at 16:50 | Reason: Not specified

User

Posted 28 Aug 2015 at 16:59

😁😁 I've desperately avoided this post despite the fact if I'd been tested at 45 I might not be in the predicament I'm now in.
At the same time I realize testing every 45 yr old could lead to chaos. Utter chaos.
Please don't let this post degrade to name-calling and animosity , among people who are generally here to help each other through their misfortunes
Chris

If life gives you lemons , then make lemonade

User

Posted 28 Aug 2015 at 22:59

Originally Posted by: Online Community Member

It's far better to be diagnosed wrongly and have a bit of worry for a short time than not have it discovered and end up like Kev and me and hundreds of others. It should be like breast screening for women, offered throughout the NHS. I fought hard to have PSA screening for men in the Company I worked for, that already offered breast screening for women. I bet LynEyres isn't so negative about breast screening. Dead easy to dismiss matters that don't affect you!

Quantum, you have made a "leap", and you have landed wrongly. Oh dear, the first.

If you had taken the opportunity to look at Lyn's posts, her profile, her history you would have seen that she has been, is being affected by PCa previously, now and will be looking forward. Probably more than you? But I don't assyoum, like what you does.

"It's far better to be diagnosed wrongly and have a bit of worry for a short time" Oh dear, the second. Again. This is your opinion, you do not know how all the others feel about this matter, and you should not presume to speak for them. Actually maybe I am now presuming? Maybe you HAVE spoken to everyone else? Somehow, I doubt that you would bother with such formalities for the sake of accuracy? Am I wrong? I doubt, and assume not.

"I bet LynEyres isn't so negative about breast screening." Oh dear, the third. Yet again. Hmm, a pattern developing here perhaps, not wanting to "asyoum", like what you does mistakenly, I can only ask for and seek clarification from you?

Instead of "betting", as in "I bet LynEyres isn't so negative" etc, why do you not ask her view? And it's Lyn Eyre, by the way not Lyneyres.

This forum has always been, should always be, a place where anyone genuinley affected by PCa, whether directly as a sufferer, or indirectly as a partner or friend of a sufferer, can come and post without fear, for support, discussion and for anyone to be able to air their views and speak freely without fear of attack, criticism or disparagement, such as yours, about PCa without name calling, insults or any bullying, which I think you have descended to. I have reported your post to the moderators because I believe that you have overstepped the mark.

dave

edited to add that assyoum makes an ass out of you and, "you" actually. :-)

edited a second time to add the "keyboard warrior" should consider, would he/she say what she/he has typed if they were standing in front of the person addressed?

Edited by member 28 Aug 2015 at 23:06 | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 29 Aug 2015 at 01:05

I have stayed out of this debate partly because we have done this before with similar disparity of views. But it is unfortunate that the no vote as it were is reduced to a view by just Lyn. This is not correct and I wanted to say that I agree wholeheartedly with Lyn,s position and would also say GP and patient education would reach far more. Apart from the cost of screening, you need it interpreted correctly and the follow up services need not be swayed by the panic that the revelation you have PCa gives to people.

I have advanced metastatic PCa which arose from a psa test done by my diabetic consultant for his own interest. It was only 7.5 but I had bone mets. Could it have been discovered earlier? Who knows but it would not alter where I am now so I just look forward.

All screening has to decide on a date and Bowel screening, generally effective, starts at 60. My close friend G was tested when he became 60 and he was diagnosed and died 8 months later. We need to understand what this is about not just support a process as if that would deal with the complexities.

Let's debate the different views but as Countryboy so elegantly States this is not just something Lyn disagrees with and due respect to everyone's opinion should be accorded.

User

Posted 29 Aug 2015 at 07:33

I agree with Lyn and Paul. One of the main reasons screening doesn't happen with those who want it to are the abusive. That well might work in their locality but in the bigger world there is the need to win the case by allowing people to disagree and persuading them otherwise by debate and discussion.

I have some understanding of those at the very sharp end but being abusive only makes their aims harder to achieve.

Ray

User

Posted 29 Aug 2015 at 08:46

Would appear that everybody can express their negative views, but I am attacked for expressing my positive views. Countryboy 99 has taken the time and trouble to contact every body affected by this Cancer, which allows him to assume he knows what everybody else wants. I, like lots of other men on this site know what effect being diagnosed with PCa has. I have seen my younger brother die from PCa and I have survived for 10years with it. Like Allister there are no further treatments available for me so the reality of not being diagnosed early enough is now hitting home. I didn't attack anyone or assume I knew what other people were thinking. It was and is my opinion, which I had hoped to express without causing offence. I am, and will continue to fight, this pernicious disease every way possible. I have undertaken trials of new drugs, had a number of bone marrow biopsies for research purposes, fought to have Cancer screening within my Company, have raised petitions to have drugs freely available, lobbied MP's and generally attempted to inform men about the effects of PCa and the need to be tested so to catch PCa early. Being proactive can and will beat this cancer. Doing nothing is not an option.

User

Posted 29 Aug 2015 at 08:57

Can't agree with negative and positive it's just difference of opinion. I don't know of any longer term members who try to dissuade those for screening from posting in fact the opposite

Good luck in your efforts .

Ray

User

Posted 29 Aug 2015 at 09:04

Quantum,

I apologise that my post was critical of you, when your criticism was what I felt was out of order. Somewhat ironic. I won't edit it, because at the time I believed what I wrote.

My point is, no one should be presuming and claiming to speak for the rest. And, if you read some of the profiles of people here you would see that many of us are, or have been affected by PCa. Inaccurate emotive jibes about other's experiences does you no credit. Maybe, if your PCa had been diagnosed earlier you would not be where you are now? Maybe, a screening programme would catch more, maybe not? DRE, biopsy, MRI are all inconclusive as far as I am aware? The only diagnostic certainty is following pathology after removal as far as I am aware.

For all the effort you are putting in to fight PCa whether yours, or development of treatments and research, that is to your credit.

However, your way to fight PCa is not the only way. And with that I rest.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)

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