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Petition for National Prostate Cancer Screening Started

User
Posted 23 August 2015 19:47:03(UTC)

https://www.change.org/p/the-rt-hon-jeremy-hunt-mp-national-prostate-cancer-screening-for-the-uk

 

My story is typical. No symptons until it was too late, (back, right hip and pelvis pain)
My father died of advanced prostate cancer. I had fears that my back/hip pain was due to the disease so asked for a psa test but I was 'talked out of it' with the standard "70% of people who have a raised psa dont have prostate cancer" lets wait and take these painkillers"

They even agreed to a chiropractor who did 3 sessions on my right hip trying to 'free it!"

Anyway, I am now on ProStap and the right thigh numbness I had has gone and pain is 'manageable'

I have started this petition because my consultant said it probably started around 3 years ago and migrated around 6 months ago.
I was 50 three years ago so if my GP had invoked the Prostate Cancer Risk management programme (which is issued by NICE to GP's but they can choose to do nothing about them) then I would have had the test and would now not be terminal.

Please review the petition above and sign and share if you agree.

Many thanks and I hope I can gain some strength and support from you guys.

Regards

Kevin

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User
Posted 06 May 2016 07:41:36(UTC)

Hi everyone

6 months on.

I am almost bedridden now. Pain is bad but pain meds help.
After numerous communications with government departments, PCUK, Public Health England, National Screening Committee and other bodies, it was clear that no national screening for PCa would be put in place until there was a more accurate test.

After I started the petition a company from Cambridge contacted me about a test they had developed. I had a friend who was a Clinical Biologist lecturer at UClan. I introduced them which formed the collaboration with researchers at the university and the company from Cambridge. Since then they have won a biotech award from PitchPalace which is run by the Duke of York and recently they have begun crowdfunding for the first phase of their objectives which is to produce a home test kit for consumers See more here Myself and my wife are featured in their video.
The second and third phase will be aimed at clinical trials for NHS approval. 

I personally, have been in the press, on radio and TV talking about my story and the new test.
I was also involved with PCUK with their PSA Consensus

The links below should give you all the information you may wish to know.

BBC Radio Lancashire interview (includes Dr Carole Rolph and myself)

BBC North West Tonight

My time is running out but this test may just be something that could  help many thousands of men avoid this awful disease in the future.

Best wishes to you all
Kevin

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User
Posted 31 August 2015 23:24:48(UTC)

Good Lord!!! I have only been away a few days!

Lovely friends who jumped in to defend, there was no need. I am neither offended nor hurt by Quantum's post. Debate is good - it gets people thinking rather than just going along with whatever they last read in their newspaper. If one person gets a PSA test as a result of the petition, that is progress for that man. If one more GP begins to understand how and when to offer PSA tests - and when to refer on - that is progress for many men.

For the record Q, I had most of one breast removed years ago, being too young for the screening programme :-( I had also had my cervix removed by the time I was old enough for the national smear tests. Both John and my dad had low PSA and probably wouldn't have been picked up in screening. So no, I don't support the idea of a national screening programme for PSA which would undoubtedly have a lower age limit making it less likely for men under that age limit to get a test when they need it. There are better-worded petitions out there offering our politicians a more coherent argument and part solution - including one shared on our forum last year which perhaps you all signed?

What I do believe vehemently in and will continue to try to contribute towards is raising money to fund research into a better understanding of this cancer - differentiating between the tigers and pussycats, the end of the postcode lottery on life-prolonging drugs, and better mental health services for men affected by the disease or its side effects. I would like to see more doctors disciplined for shocking practice and more education and training for the good doctors to get even better. I channel my thoughts and hopes into action - we fundraise hard as a family and I think between the London marathon and our last couple of charity balls we have raised a few thousand pounds for PC research. This is in addition to a number of other charities we support. Changing the world takes so much more than a few angry words on here - fortunately, I know that Quantum is a man of action who does his own bit to change things so I can stomach a lashing from him without becoming broken 😢

Wishing you all a peaceful and calm night x

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


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User
Posted 01 September 2015 16:07:46(UTC)

Really interesting and controversial debate ! I signed the petition, I know the pros and cons of the argument and admit to signing for very emotional and some might argue, not entirely rational reasons, that being the loss of my partner nearly a year ago from advanced PCa, too late by the time symptoms began. I bet Neil wouldnt have gone for a PSA test even if it was on offer because he wasnt bothered about his health, many are the same. My neighbour was accidentally discovered to have PCa when his cardiologist happened to say 'let's do a PSA test along with all the cardiology tests.' That saved my neighbour's life. I am so aware when I listen to radio phone ins, how many respondants have approached their GP's, with symptoms of concern, to be discouraged from any further cancer tests and when they are finally investigated, the disease is there and spreading. No test or regime will ever be perfect, but if it's all you have got, I don't blame people wanting to go for it.

I recently responded to an article in the Daily Mail I happened to read ;  a man who had an increased PSA, had a TURP on recommendation of his urologist, no cancer found, but his complaint was that the repercussion of the TURP had serious side effects for him. This was next to an article by Micheal Mosely about unneccessary health tests. In my letter, which they published, I did comment that unfortunate though the repercusssions of the Turp was for the writer, at least he was still alive, and my partner damn well isnt !!

Fiona. ( Will have to rename myself ' Angry of Bristol' at this rate ! )

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Posted 23 August 2015 20:35:15(UTC)

Sorry Kevin, I can't sign the petition as I disagree with the notion of introducing a screening programme. In my view, it would save more lives if there was a campaign to increase GPs' knowledge and understanding. A national screening programme would be too expensive, would diagnose men who might never have any problems and ultimately would lead to over-treatment.

Sad as your story is, a screening programme might not have made any difference to your outcome. Better training for your GP might have done.

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


User
Posted 23 August 2015 21:19:48(UTC)
Kevin
The problem you faced is so common it is not the lack of a screening programme but GP awareness that failed you. There is a real danger of unnecessary treatment and psychological issues from using a PSA test as a screening method as Lyn has said.
Various organisations are working to try and find a viable and more accurate test that could be introduced but so far nothing has materialised.
I think anyone with a family history of this disease should be baseline tested on request, and monitored if necessary thereafter, from what I have seen in the last 2 years probably from age 40.

I really feel for you and think you could have been supported better but I cannot support your petition for the reasons I have mentioned.
Mo
User
Posted 23 August 2015 21:43:43(UTC)

Lyn & Mo
I think it's easy to make the assumptions that screening will result in more over treatment and more worry.
However PSA testing is the best we've got until a better test comes along. Waiting for a better test is absolutely no reason not to use the PSA test. It could take years.
France & Germany already screen.
Cost should nor be an issue here, if it is then charge for the test unless the recipient is found to have PCa
I had to force my GP to give me a PSA test (I had no symptoms) my PSA was 235 and the PCa had spread to hip.

I for one support the petition

Paul

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User
Posted 23 August 2015 22:57:17(UTC)

Healey, this is a debate that runs on here regularly and maybe you are surprised that some of us disagree with screening so strongly. You are quite new to PCa so I would ask you to go find out about it properly. Part of the issue is the definition of screening - France does not have a national screening programme, their system is similar to ours in that the man needs to approach the GP. Similarly, in Germany screening is available on request. 'Screening' in France and Germany is something rather different to what is being campaigned for in the UK.

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


User
Posted 23 August 2015 23:01:06(UTC)

It's not about the cost of the test - it is about doing tests on people who don't want to know or would not take action even if diagnosed. 'Doing to' is never again going to be an NHS style of delivery - 'deciding with' or 'agreeing in partnership with' has to be a better approach.

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


User
Posted 24 August 2015 00:58:15(UTC)

Come come Lyn, why would men take the test who don't want to know whether they might have PCa - that doesn't make sense. Nobody would have an arm twisted to take the test and it would be up to them to decide whether to pursue this through to possible treatment. The PSA test does of itself do no more than give men this opportunity. Some men do have over treatment but treatment cures some, particularly with early diagnosis and extends lives of some others with more advanced PCa. The risk benefit of treatment should be up to the individual.
In about 2008 or maybe 2009, there was the 'Great PSA Debate' where leading doctors argued for and against National PSA testing being offered at 50. This was at a meeting principally of professionals and those highly involved with PCa. Those in favour of National testing won the debate by a wide margin. (This was reported in the old format of this forum just after the meeting and has been alluded to at considerable length subsequently. I find the search facility far more difficult to throw up what you are looking for in this new format but no doubt somebody who is interested could find the threads and resuscitate them if considered helpful).

I do agree that GP's could be better informed and act more appropriately but this is 'reactive' rather than a 'proactive' situation that National voluntary screening would offer. Even 50 is late for some, particularly those of Afro-Caribbean extract and others at higher risk. However, men should be made aware of possible follow on consequences of treatment and the possibility of over treatment.  One of the advocates of National screening on this basis and who spoke in the aforementioned 'Great PSA Debate'  talks in this video with somebody who is not so keen on National screening.  http://prostatecanceruk.org/about-us/news-and-views/2013/7/from-doctor-to-patient-the-psa-test 

 

 

 

 

Barry
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User
Posted 24 August 2015 07:34:12(UTC)

I am astounded by your reaction Lyn. I am not on about 'forced' testing. I know that to some, the phrase 'National Screening' can sound like you have to be tested. So okay, let's put it another way, make it mandatory for gp's to talk with a male patient aged over 50, or if you want to be even more cautious, ask the patient if they would like to discuss the matter. You talk about raising awareness well what a wonderful way to start, with your own gp.

The 'over diagnosis', 'unnecessary treatment' and 'psychological harm' arguments are becoming less acceptable as reasons not to have a 'mandatory discussion' (if that's how you want to see it)

There is evidence of 'over diagnosis', 'unnecessary treatment' and 'psychological harm' in cervical and breast cancer screening and yet most women accept that it's a good thing.

Why can't men, at least have the opportunity to be 'made aware' by a clinician (who should have the ability to disseminate information carefully and professionally) and then to act OR not act on that information.
I just can't see why you would not want that....... I just can't.

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User
Posted 24 August 2015 09:20:27(UTC)
Kev
I do not need to defend Lyn or her words she is more than capable of doing that herself.

I would concur with others this debate has been raging for a long time and it always seems to end up where those in the medical profession vote yes and those providing the service say No.

As a woman who has always had every screeninng test offered to me for cervical and breast cancer and in a few years time i will also add bowel cancer screening to that list, I do feel it is wrong and unfair that a cancer that carries 25% of the overall national statistic has nothing when those 3 added together come to about 16%

However the big difference is around the validity of the test itself and who would truly benefit from it if it were available.

Some interesting findings are coming out of the bowel screening programme. I will not go into that here as anyone who wants to know can look that up on the internet the information is widely available things like take up rates, positive results, false positive and false negative results etc.

So I think campaigning for a generic PSA screening facility is probably futile. I am all in favour of campaigning for a vastly improved GP advisory service where every man can go through a well man survey at say age 40, those identified with a higher risk factor can then be offered an optional consult. With the benefit of more detailed information the man can then decide if he wants to proceed with a PSA test.
I also firmly believe that awareness campaigns are a vitally important factor, knowledge is power so big press adverts in daily papers, mens and womens magazines on TV, social media ads etc etc.

There is a comprehensive set of NHS guidance publication on PSA testing for clinicians and patients you can find a copy of them on the internet. Sadly they do not seem to have reached their target audience. Your own GP had either not seen these or chose to ignore them.


I believe this would give a far more practical short term solution until a much more accurate Prostate Cancer detection test is available.

best wishes
Mo
User
Posted 24 August 2015 09:32:06(UTC)

If you had set up a petition on that basis, it would be a different matter Kev. But you haven't, you are asking people to support a national screening programme. We already have a national protocol that says any man over the age of 50 can have a PSA test if he has symptoms, is at increased risk or requests one for other reasons - why not throw your efforts into a campaign to make GPs comply with what's already set down?

ManwithPC, what is the point of testing a man who already knows that he would refuse treatment? If he doesn't want to know, the NHS shouldn't be forcing him to face it.

Men sometimes draw comparisons with the breast screening programme but even that has changed recently. At the age of 50, a woman now receives a leaflet about the pros and cons of mammograms, the risk of over treatment, etc. the leaflet then says "if based on this info you still want to be screened, contact us to make an appointment" In my vision of the perfect prostate world, men would get something similar but this is not what the petition is campaigning for.

The truly global screening in our country is for cervical cancer - for women of the target age group the letter says "your smear is due now" rather than "contact us if you feel like it." Fine and dandy except that the impact of medics having a fixed age group in their minds is that young women are dying needlessly because they can't get a smear if they are too young. My mother and I had cervical cancer ridiculously young but all of my daughters have had to wait until the proscribed age before they could be tested - predictably, for one daughter this was too late and she has had to have treatment.

I don't think there is a snowball in hell's chance of getting a prostate cancer screening programme in England but if it ever does happen, then all our members who are in their 40s would have had to wait until they were 50 or whatever age the bar is set at and would probably be doomed to an early death. Be careful what you wish for - or at least put together a more coherent campaign that addresses these issues!

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


User
Posted 24 August 2015 09:49:05(UTC)

If a screening was in place would family/friends put pressure on men who at present are deciding not to have the test? If so Is that arm twisting?

The GP issue is long standing. Even if you could compel them to discuss it could you alter their tone of bias for or against? Isn't it that tone that most folks base a decision on?

A possible way forward: I was diagnosed via a medical trial. A group of about 40 had both sides of the issue explained. There was then a refreshment break in which time those who didnt want the test simply walked out.Those undecided had the opportunity to discuss it further with the hosts and or other men.

Ray

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User
Posted 24 August 2015 10:50:43(UTC)

My GP 'talked me out ' of having a PSA test over 3 years ago, despite me explaining to  him that my dad died from metastasised PCa at the age of 55 ... ( partly my fault for not insisting on a test I know ) but I followed his advice.......

I had no symptoms, and 2 years later on an unrelated visit I was given a series of blood tests as part of an 'MOT' that I had requested at the time... ( check my profile for details )

Unbeknown to me, one of the tests that was requested was a PSA test and this came back at 9.86, and so a referral and a series of investigations began with the result of a PCa diagnosis. 

I was very fortunate that my PCa appears to have been contained ( pT2c )... my consultant says that indications are that the tumours had been present for some time judging by the size and volume....
Had I had a PSA test a few years ago when I initially enquired instead of being talked out of it, I'm sure my PCa would have been discovered much earlier and I would have had a better chance of a cure? 

I can understand how Kev must be feeling, and I would be feeling the same about my GP if I were in Kev's shoes!

PS..... I've signed the petition Kev

Luther

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User
Posted 24 August 2015 11:52:15(UTC)

I have signed your petition Kev I do not agree with Lyn and agree with you men should be screened then the decision would be taken away from doctors who seem to want to fob you off when asked to do a psa test. Andy

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User
Posted 24 August 2015 12:27:35(UTC)

We know that the PSA test produces false positives and negatives. Likewise, the DRE may or may not indicate there is a possibility of PCa. Even biopsies and sometimes scans can miss cancer. But despite these short comings the PSA test can and does lead men who want to be treated to have that option albeit that in some of them the cancer might not have developed in a way that active intervention was necessary. However, they should be empowered to make this decision and VOLUNTARY National screening at 50 would help some of them to do so in some cases. 50, though an arbitrary figure, is given as that is the age when the incidence of PCa begins to show a marked increase.

Of course, men who are at greater risk through ethnicity, family history, or symptoms should feel they could have the test earlier.

Barry
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User
Posted 24 August 2015 18:38:46(UTC)

Seen a similar article on the TV tonight...... Maybe in time this will become a more reliable test than we currently have?



http://medicaldetectiondogs.org.uk/prostate.html

User
Posted 24 August 2015 21:28:36(UTC)

National Prostate Cancer Screening, whether it is HK2, PSA or others is needed. Somehow, some way, we need something.
Think about this.
It is generally reported that 40,000 men are diagnosed with prostate cancer every year in the UK.
Yet we have one of the lowest testing regimes at around 8%
So if 3200 are diagnosed with testing... what about the 36700??
They can only have been diagnosed AFTER symptoms prompted them to take action. And when symptoms of this insidious disease show themselves it has usually spread outside the prostate like in my situation!! ... which is too late!!
THAT'S WHY WE NEED REGULAR AND STRUCTURED TESTING

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Posted 24 August 2015 22:16:17(UTC)

Lyn, in my 'blurb' for the petition, I talk about screening. Okay, at the end I speak of the "PSA" test. If that is all you see and hang on to, in your reasoning 'against testing' then I can't (and don't want to) change your view.

Best wishes to you and all the people and their loved ones who are going through a tough time because of this horrible disease.

I won't bother anyone anymore.

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User
Posted 24 August 2015 23:09:53(UTC)

You aren't bothering anyone and it is right to do what you believe in - the membership here is probably evenly split between the pro-screening / anti-screening camps and those with no particular view. I think your maths is a bit out though - there are 25 million adult men in the UK and if we assume even distribution that would equate to about 12 million men in the over 50s category. The stats suggest that 8% of men in target age group have a PSA test which would be 960,000. Of course, not all would be tested in the same year but even so, that is far more negative tests than diagnoses.

NHS data says that 15% of men who have a PSA test are subsequently diagnosed with PCa - so if 40,000 were diagnosed last year, there must have been 267,000 men tested.

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 ...

It's a complex issue but debate is good for the soul - please don't take offence :-)

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


User
Posted 25 August 2015 06:13:43(UTC)

You're not bothering me Kev, far from it.

I have signed your petition and I shared it on my facebook page and I know others on there have signed, probably because they know my husband was diagnosed with prostate cancer and they want to help.

I signed because you asked me to.
I signed because my husband is one of the "lucky" ones in that his cancer was relatively mild compared to yourself and others
and I wanted to help you in your quest.
That was (is) an emotive response because I know your situation and you are motivated by a need to make sure that others don't end up with terminal cancer because a GP discourages a PSA test.

We were lucky in that our GP did it automatically when John had to have other blood tests and it was only added to the form because of his age, a lot older than you.

I have doubts that anything will come of your petition, mainly because of the huge financial costs involved, BUT if nobody addresses these issues we'll never know will we.

If you get a knock back on this petition you will have gained experience and will know how to word the next one!!
Keep chipping away there my friend.

At the very least, this petition, and any others of the same ilk that you start, will be raising awareness.

The fact that I shared it on my facebook page will make a few of those men wonder whether they ought to get checked and without the petition I wouldn't have gone on there telling them all to think about it.

At the very least I feel that any man, irrespective of age, whose father, siblings, grandfathers, have been diagnosed should be able to ask for a PSA to check their levels so that they are one step ahead in this horrible game that causes so much worry and distress.

Our son is 43. He asked for and got a PSA, partly perhaps because his younger sister has already lost her rectum to cancer and it was discovered that he had precancerous polyps in the same area so his GP was open to the suggestion.
Without his father's cancer I doubt whether he would have given getting tested a thought.

For men like you and him, where it is in the family it shouldn't be necessary to "beg" for the test. It should be offered and GPs themselves need to have the best interests of their patients at heart instead of worrying about how much it is costing them.

John has regular blood tests as he is still under the hospital. The hospital doesn't arrange those tests but expects him to get them through the GP. The first time (post Brachytherapy) that he asked the receptionist to arrange the blood test form and explained it was at the hospital's request she was quite miffed and said they aren't daft are they. It comes out of our budget not theirs so all of it is cost related, which is why I think this particular petition isn't likely to get far.

I really wish you well with it. I shall continue to support you in your aims, since what did it cost me. Nothing financially and a few minutes of my time.
If petitions like this one are sufficiently supported then it tells the powers that be that they have to stop and consider what is in the public interest.

Good luck with it Kev.

You are doing your best for others, thinking of others, even though you know that this petition is too late for you.
I admire your determination and desire to make sure that what you are going through isn't going to spoil life for others if it can be avoided.

Best wishes
Sandra

We can't control the winds - but we can adjust our sails
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Posted 25 August 2015 06:55:46(UTC)
Hello, I can see both sides of the story. My other half went to the GP about something else, they did blood tests including a pas test. It was found to be slightly raised. We also found he had had at least 6 psa tests over the previous 10 years, he hadn't been told, we had no idea what a psa test was. He has now been treated for a slow growing prostate cancer. But it may be treatment he may never had needed. So the psa test will cause unnecessary treatment, but will also save lives. Most women have smear tests, but I'd love to be able to have other tests for things like ovarian cancer. So if I was a guy I would want the psa test done. I will encourage my boys one day, even though they are far too young to think about it yet. Even more so when prostate cancer is in the family. The OH's father had it but only the older mans version, no treatment needed and he died of something else age 93. His Mother had ovarian cancer which took her life age 89 so both these mean OH was at greater risk. Though no other family members have had either cancer.
I do think men should be screened if they want it. Definitely if it's in the family. A friend of ours went to his GP after my OH's diagnosis. He's in his late 50's and uses another GP surgery, he asked for a psa test and was refused due to no symptoms. That is bad. My OH had no symptoms either.
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Posted 25 August 2015 08:55:08(UTC)
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
xx
Mo
User
Posted 25 August 2015 09:14:20(UTC)

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

 

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Posted 25 August 2015 12:03:29(UTC)

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

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Posted 25 August 2015 15:11:58(UTC)

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 August 2015 16:49:03(UTC)

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....-introduced-at-this-time

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


User
Posted 25 August 2015 19:21:27(UTC)

Lynn you are becoming Mrs negative let Kev do his petition

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Posted 25 August 2015 20:08:33(UTC)

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

 

 

 

Not "Why Me?" but "Why Not Me"?
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Posted 25 August 2015 21:54:31(UTC)
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


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Posted 25 August 2015 23:45:31(UTC)
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
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Posted 26 August 2015 14:28:34(UTC)

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

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Posted 27 August 2015 22:31:39(UTC)

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....SA-Debate-Q-Analysis.pdf

Barry
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Posted 28 August 2015 16:31:25(UTC)
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
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Posted 28 August 2015 16:46:44(UTC)

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!

 

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Posted 28 August 2015 16:59:56(UTC)

😁😁 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
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Posted 28 August 2015 22:59:58(UTC)

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?  

 

 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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Posted 29 August 2015 01:05:12(UTC)

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.

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Posted 29 August 2015 07:33:54(UTC)

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

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Posted 29 August 2015 08:46:53(UTC)

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.

 

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Posted 29 August 2015 08:57:47(UTC)

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

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Posted 29 August 2015 09:04:31(UTC)

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

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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Posted 29 August 2015 09:16:59(UTC)

I am very sad that Kev's original request for support has degenerated into "he said, she said, they said".

I didn't think ahead to the successful result of this petition and what troubles it could cause.

The way things work in this country (or seem to) even with 10,000 signatures, the powers that be will still do their own thing.

I was just hoping that Kev's petition would gain enough support for it to raise questions and awareness.

I signed the petition because a very brave man asked for my support at a time when he knows his own life it limited and he wants to try and make sure that other men and their families don't suffer like he and his family are.

Whatever the rights and wrongs of the wording of this particular petition, squabbling among ourselves will taint the goodness, the effort and the willingness of a terminally ill man to change the system for others.

Emotive response? Course it was.
Do I regret signing? Course I don't

My daughter in law at 27 was told she didn't need an urgent appointment for her breast lump because of her age.
It was aggressive stage 4 cancer and she had a mastectomy (eventually)

My daughter from the time she was in her twenties would approach the GP with bowel problems, again nothing to worry about, at your age it's IBS and that's what she was treated for. Result, aggressive colo rectal cancer at 38 and now has a colostomy bag.

My grandson's constant throat problems were put down to childhood ENT problems. Loads and loads of antibiotics later. Result?
Inoperable naso pharyngeal carsinoma at just 13.

It shows that GPs don't always get it right.

Probably changing  the wording to this petition would give it greater success. ie making sure that GPs actually stick to the protocols regarding men at 50 or those with familial cancers.

Kev will learn a lot from formulating this one, from reading the comments from Lyn and others.

If he has the energy and time is kind to him, perhaps he'll do another one that is more likely to succeed.

But please, people, can we not give credit where it's due and give Kev a thumbs up for even trying?

I could cry with frustration this morning that this is happening to us all.

I can only hope that this family, like our "normal" family spats passes over and doesn't leave a lasting legacy of tension.

We are, after all, all in this together, for better, for worse (bit like marriage eh and that has it's ups and downs doesn't it?)

Let's agree to disagree.

Lyn always makes a lot of sense in what she says. You don't have to agree with her, but her knowledge is based on experience and facts.

Quantum, I sincerely admire the efforts you have made to make people aware of this disease and well done for trying to get your company on board.

I don't doubt the sincerity of both of you, or any of the "fors" or "againsts".

Kev, well done anyway and I hope the response to your petition gives you a much needed boost

We can't control the winds - but we can adjust our sails
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Posted 29 August 2015 09:27:05(UTC)
Hi Guys

This is not what this forum is about, we are here to help those in difficulty, not argue or use sarcasm to get over a point of view. This will put people off from posting, and has done in the past so let's stop this now. I would suggest the answer to this problem is.

1. If you agree with the petition, sign it.
2. If you don't agree with the petition, don't sign it.

Now let's get back to doing what we do best and support each other.

Roy
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Posted 29 August 2015 09:45:17(UTC)

oh dear we are a sad lot we have got to he said she said , if kevs petition which is is going around (over 30,000) gets one man to ask for a PSA test which results in early diagnoses it will have been worth it and anybody.s point of view on here will not matter one bit, I tell all men my age and younger to get a PSA test done when speaking about my situation and if we all did this then screening will come in by the back door and David Cameron nor doctors could stop it .Andy

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Posted 29 August 2015 12:12:43(UTC)
It is fair to say we are a close knit bunch of people all having one major thing in common PCa. Some of us over the years have developed strong friendships through this forum and through our shared experiences.

If somebody within the group steps out of line by having a direct and unfounded jibe at one of our group, especially one who does so much good for the cause then it is only natural for others to step in to provide defence.

In the past the moderators have stepped in to stop things like this escalating as they have. I applaud CB for defending our mutual friend and reporting what I also thought was a mean and rather spiteful post.

What has been said cannot be taken away, however maybe now it can just be put to one side so we can all get on doing what we as individuals think we do best, whatever that might be.



I hope everyone has a good weekend
xx
Mo
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Posted 31 August 2015 23:24:48(UTC)

Good Lord!!! I have only been away a few days!

Lovely friends who jumped in to defend, there was no need. I am neither offended nor hurt by Quantum's post. Debate is good - it gets people thinking rather than just going along with whatever they last read in their newspaper. If one person gets a PSA test as a result of the petition, that is progress for that man. If one more GP begins to understand how and when to offer PSA tests - and when to refer on - that is progress for many men.

For the record Q, I had most of one breast removed years ago, being too young for the screening programme :-( I had also had my cervix removed by the time I was old enough for the national smear tests. Both John and my dad had low PSA and probably wouldn't have been picked up in screening. So no, I don't support the idea of a national screening programme for PSA which would undoubtedly have a lower age limit making it less likely for men under that age limit to get a test when they need it. There are better-worded petitions out there offering our politicians a more coherent argument and part solution - including one shared on our forum last year which perhaps you all signed?

What I do believe vehemently in and will continue to try to contribute towards is raising money to fund research into a better understanding of this cancer - differentiating between the tigers and pussycats, the end of the postcode lottery on life-prolonging drugs, and better mental health services for men affected by the disease or its side effects. I would like to see more doctors disciplined for shocking practice and more education and training for the good doctors to get even better. I channel my thoughts and hopes into action - we fundraise hard as a family and I think between the London marathon and our last couple of charity balls we have raised a few thousand pounds for PC research. This is in addition to a number of other charities we support. Changing the world takes so much more than a few angry words on here - fortunately, I know that Quantum is a man of action who does his own bit to change things so I can stomach a lashing from him without becoming broken 😢

Wishing you all a peaceful and calm night x

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


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Posted 01 September 2015 11:46:22(UTC)

Hi everyone – we’re really glad to see people taking action to support earlier diagnosis of prostate cancer. Kev Vardy is one of thousands of men in the UK every year who unfortunately get a diagnosis of prostate cancer too late for it to be cured – and he’s put together a remarkable petition that’s got nearly 50,000 people involved and informed of the importance of early detection.

Like everyone here, we want to see aggressive prostate cancer caught early and treated successfully. But for men today, the PSA test alone isn't good enough for us to use in a national screening programme. That’s why we are working towards a risk-based screening programme for the future and investing in research to develop better diagnostic tests that can draw out those men at risk of aggressive disease at an early stage. You can read our policy position here (PDF).

I know this issue is intensely personal for everyone here. We understand both sides of the argument for and against screening with the PSA test and respect all views on this issue – we’d ask folks here to respect each other’s views as well. Everyone involved wants to find the best way to improve outcomes for men.

Please help support this community by steering clear of personal jabs – like using charged words that make others defensive, or implying that others have hidden motivations or have less of a stake in fighting prostate cancer. Every time that happens it makes the conversation a little more hostile and uncomfortable for everyone.

This is a really good conversation to have and it’s important to see each other’s views – I’m glad things seem to be cooling off. Please help things to de-escalate – and thank you to everyone who’s already done so.

Best,
Sadie

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Posted 01 September 2015 16:07:46(UTC)

Really interesting and controversial debate ! I signed the petition, I know the pros and cons of the argument and admit to signing for very emotional and some might argue, not entirely rational reasons, that being the loss of my partner nearly a year ago from advanced PCa, too late by the time symptoms began. I bet Neil wouldnt have gone for a PSA test even if it was on offer because he wasnt bothered about his health, many are the same. My neighbour was accidentally discovered to have PCa when his cardiologist happened to say 'let's do a PSA test along with all the cardiology tests.' That saved my neighbour's life. I am so aware when I listen to radio phone ins, how many respondants have approached their GP's, with symptoms of concern, to be discouraged from any further cancer tests and when they are finally investigated, the disease is there and spreading. No test or regime will ever be perfect, but if it's all you have got, I don't blame people wanting to go for it.

I recently responded to an article in the Daily Mail I happened to read ;  a man who had an increased PSA, had a TURP on recommendation of his urologist, no cancer found, but his complaint was that the repercussion of the TURP had serious side effects for him. This was next to an article by Micheal Mosely about unneccessary health tests. In my letter, which they published, I did comment that unfortunate though the repercusssions of the Turp was for the writer, at least he was still alive, and my partner damn well isnt !!

Fiona. ( Will have to rename myself ' Angry of Bristol' at this rate ! )

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Posted 01 September 2015 21:37:38(UTC)

Well said Lyn. It was the start of a debate. You made one point. I made another. Nothing personal and I am glad you see it that way. 

Pity about the comments, but hey ho I have broad shoulders,and other things to think about.

Still passionate about testing though! Just a thought, if NHS chased all the health tourist's there would be money available  for lots of treatments and or tests.

 

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Posted 04 September 2015 16:35:55(UTC)
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Posted 04 September 2015 19:24:07(UTC)

A very interesting read Roy and makes the need for screening  clear cut. Andy

 
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