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The system needs an overhaul!

User
Posted 13 November 2017 21:54:16(UTC)

Hi all,

A simple few questions i would ask this community to help me answer - any response welcomed:

 

1. Has there been any plan/best practice or guidance in place for GP's to recognise early symptoms of PCa or indeed any education pieces around risk factors - especially FH? Post 2010 or pre 2010 please advise?

2. Why has there been so much good work and developments in breast cancer and even screening programs for this disease yet nothing on Prostate cancer?

3. Why are so many poor men dying in agony, just because the diagnosis is left to sheer chance and very often sadly far too late - chance that the GP has the expertise to reognise the early symptoms and act on them correctly/speedily; and why aren't GP's supported by a better framework within the NHS to manage 'at risk' patients with strong FH (Family History)?

4. Why aren't we more angry - how many good men have to die until the system changes to support a screening process or monitor those at risk under a management care plan!

What can we do!

My Dad died in agony and i miss him every day and he should NOT have died in this way.

RIP Jurg Rebholz 18.08.2016 I love you every minute of every day dad xx

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User
Posted 14 November 2017 09:12:18(UTC)

Hello JohnnyR

I can understand your anger and frustration and that you miss your dad dreadfully.

There is no simple answer to your question. Gps are just that General Practitioners and yes there are good and bad, whether that refers to breast, prostate or any other cancer.

Our daughter in law's GP told her at 28 she was too young for breast cancer and although agreed to refer her on it turned out she had an aggressive version with serious consequences.
Her mother was told she had IBS and the GP didn't refer her until far too late and she had ovarian cancer.
Our own 38 year old daughter's bowel cancer was missed and also diagnosed as IBS

So it isn't only with PC that GPs fall down.

I agree that GPs perhaps need a better understanding but as well as their General Practice jobs (coughs, colds, rashes, etc) they would need so much more training to take on recognition of the signs and symtoms of the various cancers , and let's face it, there isn't always much to go on with say, PC in particular.

How many men appear here having been diagnosed with PC when it was found by chance because there were no symptoms.

It isn't all about GPs being educated but about us too.

We shouldn't allow ourselves to be fobbed off and dismissed when we present at the surgery with what we see as a problem.

To change the current system would be a major overhaul and there is no money  in the pot to train the GPs we have and there is also a shortage of GPs anyway.

Perhaps it's down to us, at least in part, to take responsibility for educating ourselves and not bury our heads when we think we have a problem but it's too embarrassing to go to the surgery and have our personal bits prodded so we put it off, or we tell ourselves we'd rather not know.
We could, all of us, help promote the knowledge of PC and do our bit, whether that's supporting one of our own on here when they do the sponsored runs or walks, or whatever event they've taken on, and help them raise the funds for more research.


I'm not suggesting for a minute that this applies to your dad, just speaking in general.

I'm sure (at least, I'm hoping) you'll get more response from members, views which I'm sure wil be different from mine.

At the moment you are understandably hurting. Give your dad's memory some validity by supporting in anyway you can the services such as PCUK provide. By promoting knowledge and understanding of PC even if it is only among your friends and family, it will will give his death some positivity.


I wish you peace and acceptance in the coming months. Christmas, of course, always makes our losses harder to bear.

PS. As the son of a man who has had PC I assume you have already taken steps to get checked. Even if your GP considers you too young for a test, the first one will give a baseline for future tests.

Best Wishea

Sandra

 

We can't control the winds - but we can adjust our sails
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User
Posted 15 January 2018 19:24:03(UTC)

I do not believe that resource constraints abrogate rights or the duty of care owed to us by health care professionals. Going past middle age increases your chances of acquiring lots of different illnesses (and being run over by the Clapham Omnibus) - a lot of which are in common with men and women. Prostate cancer is a disease of men. Various contributors have remarked upon a lack of information or choice and I think this is where scarce resources are best targeted. Lets face it not a lot really goes on in terms of education or involving men in decisions about their health. I am sure there are women out there who are delighted to receive their cervical screening letters as a reminder of a simple sensible health precaution. Similarly there must women out there who ignore this screening but at least they know and have a choice which can then be respected no matter what ultimately happens. As a man i would have preferred to know and have a choice. If, like all good Brits, we join the queue marked 'waiting for the cure bus' I think some of us will wonder 'what if I'd received a letter or some sensible advice as part of a structured program of male health care' instead of wondering if or when you'll have the side effects of the current treatment which, in any case, won't cure us. Would we feel any better having reached that point and had letters, contact and advice from the age of 45 or 50 years onwards (or even before)? Would we feel good that, having had that simple advice, we are now disease free? You can see that screening (or sending letters or whatever you want to call it) is far more than a medical dead end for men who are part of a family, society and who have so much more to give in the future given the right circumstances. All I'm saying is lets make those circumstances right for every man and begin, as a society, by respecting our rights and framing a basic health advice system which encompasses rights, choice and the freedom to make our own decisions by becoming informed participants in health care instead of passive receivers. Is that too much to ask?

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User
Posted 14 November 2017 17:15:16(UTC)

A few brief thoughts. Much of what JohnneyR has raised has been said so by others previously.
- Not all men who have PCa have any symptoms.
- GP's are incentivized not to refer men to Hospitals.
- Women are far more health conscious than men and visit their GP's far more readily and promptly than men. They also have
more forums for and coverage for breast cancer.
- More has been done in recent years to make men aware of Prostate Cancer. Quite frequently there are articles in
newspapers and magazines and on TV, many of the presenters of soccer on TV wear the badge of this charity plus various
events are held in aid of it which also publicize it.
- Many of us would like to see men invited to have the PSA test at 50 or earlier for those groups of men more at greater risk,
however those responsible for deciding this do not agree for several reasons, the major one being that because so many
men would be diagnosed, this would lead to more overtreatment than there is now so many more men would suffer the
effects of treatment they did not need. Quite apart from the additional cost to the NHS there would not be sufficient capacity
to meet the additional demand.
- much has been done to refine existing procedures and to introduce new diagnostic and new treatments in recent years but a
definitive test has not yet been found to determine whether a man has PCa, though research is underway for this and also to
determine those men who are more likely to need treatment rather than those who may not.

Barry
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User
Posted 14 November 2017 09:12:18(UTC)

Hello JohnnyR

I can understand your anger and frustration and that you miss your dad dreadfully.

There is no simple answer to your question. Gps are just that General Practitioners and yes there are good and bad, whether that refers to breast, prostate or any other cancer.

Our daughter in law's GP told her at 28 she was too young for breast cancer and although agreed to refer her on it turned out she had an aggressive version with serious consequences.
Her mother was told she had IBS and the GP didn't refer her until far too late and she had ovarian cancer.
Our own 38 year old daughter's bowel cancer was missed and also diagnosed as IBS

So it isn't only with PC that GPs fall down.

I agree that GPs perhaps need a better understanding but as well as their General Practice jobs (coughs, colds, rashes, etc) they would need so much more training to take on recognition of the signs and symtoms of the various cancers , and let's face it, there isn't always much to go on with say, PC in particular.

How many men appear here having been diagnosed with PC when it was found by chance because there were no symptoms.

It isn't all about GPs being educated but about us too.

We shouldn't allow ourselves to be fobbed off and dismissed when we present at the surgery with what we see as a problem.

To change the current system would be a major overhaul and there is no money  in the pot to train the GPs we have and there is also a shortage of GPs anyway.

Perhaps it's down to us, at least in part, to take responsibility for educating ourselves and not bury our heads when we think we have a problem but it's too embarrassing to go to the surgery and have our personal bits prodded so we put it off, or we tell ourselves we'd rather not know.
We could, all of us, help promote the knowledge of PC and do our bit, whether that's supporting one of our own on here when they do the sponsored runs or walks, or whatever event they've taken on, and help them raise the funds for more research.


I'm not suggesting for a minute that this applies to your dad, just speaking in general.

I'm sure (at least, I'm hoping) you'll get more response from members, views which I'm sure wil be different from mine.

At the moment you are understandably hurting. Give your dad's memory some validity by supporting in anyway you can the services such as PCUK provide. By promoting knowledge and understanding of PC even if it is only among your friends and family, it will will give his death some positivity.


I wish you peace and acceptance in the coming months. Christmas, of course, always makes our losses harder to bear.

PS. As the son of a man who has had PC I assume you have already taken steps to get checked. Even if your GP considers you too young for a test, the first one will give a baseline for future tests.

Best Wishea

Sandra

 

We can't control the winds - but we can adjust our sails
Thanked 4 times
User
Posted 14 November 2017 17:15:16(UTC)

A few brief thoughts. Much of what JohnneyR has raised has been said so by others previously.
- Not all men who have PCa have any symptoms.
- GP's are incentivized not to refer men to Hospitals.
- Women are far more health conscious than men and visit their GP's far more readily and promptly than men. They also have
more forums for and coverage for breast cancer.
- More has been done in recent years to make men aware of Prostate Cancer. Quite frequently there are articles in
newspapers and magazines and on TV, many of the presenters of soccer on TV wear the badge of this charity plus various
events are held in aid of it which also publicize it.
- Many of us would like to see men invited to have the PSA test at 50 or earlier for those groups of men more at greater risk,
however those responsible for deciding this do not agree for several reasons, the major one being that because so many
men would be diagnosed, this would lead to more overtreatment than there is now so many more men would suffer the
effects of treatment they did not need. Quite apart from the additional cost to the NHS there would not be sufficient capacity
to meet the additional demand.
- much has been done to refine existing procedures and to introduce new diagnostic and new treatments in recent years but a
definitive test has not yet been found to determine whether a man has PCa, though research is underway for this and also to
determine those men who are more likely to need treatment rather than those who may not.

Barry
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User
Posted 14 November 2017 20:32:22(UTC)

There have been huge and very encouraging developments in the treatment of Pca in the last few years but the lack of any decent screening and testing is dangerous and costing lives.

As a black man with a very strong family history my husband was sent away with a leaflet when he asked about a psa test a few years ago and told to come back 'if you ever get any symptoms.'

He never did get any symptoms but he did end up last year with a diagnosis out of the blue of metastatic Pca with a psa of over 6000. His oncologist has said that although the test has some limitations in his case (and with suitable follow up monitoring) it would almost certainly have saved his life

I can't even begin to say how that makes me feel even though we are obviously very grateful for the treatment he is getting at the moment.

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User
Posted 17 November 2017 09:21:59(UTC)

There many reasons why there isn't a screening programme for PCa, but the main one is that we don't have a reliable test.

PSA is 'indicative', but not even close to being diagnostic. If that was rolled out across the country, it would clog up the NHS - because so many men would need scans, 'just in case', which - in most cases would be negative.

And that's another part of the problem PCa - as a tumour - doesn't cause problems until it's been there for years, but a small tumour, with no symptoms could produce fatal metastases. Screening would have to find microscopic metastases, and it isn't (yet) up to it.

Very few cancers are 'screening friendly': the bowel screening programme has had amazing success (and value for money!!), because they the disease tends to be well established locally before a a late spread - and it tends to bleed. Blood is detectable, with few false positives or negatives.

Breast cancer screening has always been controversial, because it produces false negatives, and anxiety-producing and expensive false positives. Cervical screening  - the first national cancer screening - does catch cancers, but often too late.

When - if - they find a reliable marker, we'll get a screening service. As will melanoma, lung cancer, brain tumour ...

The tragedy is that a screening service based on PSA undoubtedly would save some lives - but for the vast majority of PCa people, it would have made little or no difference, and taken nationally, would have produced tonnes of avoidable anxiety and tens of thousands of expensive ineffective scans. It just isn't a good enough test.

 

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 27 November 2017 17:54:49(UTC)

Thanks to you all for taking time to reply. It's so good to hear you views (whether i disagree or not) and that you are all so passionate to find some solutions. I am angry of course i am as the GP missed valuable gold-standard symptoms for years and my dad has a very strong FH - his Father passed away at a very similar age, as too did both of his brothers and this is my point also. With such a strong FH, which was mentioned time and again, it was dismissed as 'something else'. I have researched this a lot, as i have with PCa and the evidence is that their is a link between FH and PCa, as too am i enrolled on a pioneering trial at RMH ICR unit to screen myself, given this link/fact. I propose that most senior members involved with specific Urology in this area of oncology would agree that FH does determine you are more at risk. It's NOT hard to see this fact listed anywhere on the internet, yet this GP chose to ignore this. It's very simple: if my Dad (and no doubt thousands like him) had of been put on a Management plan of some kind, a PSA test yearly over the age of 60 (at little cost to the NHS and indeed for peace of mind), he would have been saved (FACT). Even if presenting with asymptomatic concerns, or even if worried about PCa, the GP should investigate and work from the basis to rule out the most serious conditions first. I do NOT buy into the idea that offering of tests or recommend tests will make the patient unnecessarily nervous. I watched my dad die horribly from pain and i will take 'nervousness' any time over what i had witnessed. Yes, PSA is not a magic bullet tool but it's the best we currently have, and this test used correctly in a ,managed design/framework to create a 'pattern' of results, reveals a hell of a lot more than the GP's 'instinct'. Test's rarely lie, okay there can be false positives etc etc, but then referrals and follow up's can be put in place to rule out anything that's considered an obscure result or an anomaly. Refusing or denying a patient with concerns a simple test is not acceptable - i have seen the results and spoken to countless men out there that have experienced this. A change IS needed, starting with NICE and an overhaul of the current system/guidelines and the way the PSA is used within this disease-detection for e.g. a baseline reading is only good enough if it's measured against successive regular results over years, giving a clearer picture of prostate health and any developments. Any developments can be assessed along with presenting symptoms, catching it early enough for treatment, and curative treatment at that. But it needs to be a program of regular interval testing not just one, "and your fine, off on your way", but a managed system. Has anyone looked into NICE guidelines regards PCa - the entire body of text, around 90% focuses on post-diagnosis, which in my mind is very wrong and worrying. By developing a best practice model to 'prevent' or screen based on relevant 'at-risk' factors, now scientifically proven would a) save lives... many of them b) save the NHS expensive treatments/drugs once diagnosed at a later stage (too advanced) for a curative process! My dad was badly let down by a system that is scared to be proactive, but why? There are screening processes for Women! The only reason i can think of is money/cost or the perceived cost or is it something more worrying - the fact they would find a lot of men with the disease? If this is the case it is something we have to change, i cannot sit by and let my son's generation 'wait' for a more proactive stance and continue to place ourselves at the hands of the lottery of GP's - are they competent or not?? It's brilliant all the research into better drugs/treatments etc but this is after a diagnosis, surely we should be attacking the disease at both ends - catching it earlier on to give Men a chance. Give those the tools to detect & protect as well as to treat. I firmly believe consistent PSA testing would have saved my poor beloved Dad's life, it's that simple. I have heard the dilemma that over-treating is a significant consequence, yes it is, but it's preferable to an agonizing death sentence with all the mental health issues that come with this horror story. I know i have seen it, experienced it for 2+ years and still have flashbacks of images i cannot describe to you on here as it would'nt be fair. You may not agree with me, that's fine, but PCa typically only presents symptoms when it's too late, and metastatic spread is inevitable, meaning survival chances are severely reduced. How many patients go to the Doctor then? I would love to find out statistics showing % of those lucky patients caught early enough by PSA testing and given curative treatment when the GP has applied a thinking > age + gender + FH it really is that simple...

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User
Posted 27 November 2017 23:40:00(UTC)

JohnnyR

Your anger at the loss of your father, his tardy diagnosis and what he went through is understandable. Where the family of a man seeking a PSA test has PCa or Breast cancer in his family, a GP should readily agree to this as it is known he is more at risk. Research to find an initial and accurate way of determining whether a man has PCa is ongoing as PSA alone or even with DRE is not a reliable indicator.

Barry
User
Posted 01 January 2018 10:43:32(UTC)

I'm inclined to agree with the screening argument in principle. At the end of the day women long ago realised that good health care is a fundamental human right. Not to be argued over or denied by anybody let alone your doctor. As things stand post my diagnosis both my elder and younger brothers got PSA tested and this has led to increased health knowledge in both of them and also helped them to drop the macho fear of doctors and get into looking after themselves. In my own case I acted (eventually) when I got symptoms and now have to live every day wondering what is going to happen to me. Although my PSA was not, by any means, astronomical it was high enough to exclude me from some treatments. The NICE guidance predicates PSA as part of the process of diagnosis of something. The lesson I learnt here was if I had gone sooner for testing (I was ignoring symptoms) then at least my choices would have been greater. If you want evidence of this then read this forum. Similarly, this leads to the inevitable conclusion that if I had been screened a few years earlier I might have had more choice about my treatment. Admittedly urinary dysfunction is not the be all or end all, but, then again, neither is a breast lump, vaginal / rectal bleeding, tummy ache, unusual swellings, headaches, persistent coughing, coughing up blood, blood in your urine - they are all signs of something and need investigating. A rights campaign for men would help and that needs to start at the cradle. The separation of genders into women are healthier and men are not starts somewhere and has to be challenged. In prostate cancer I think I detected a certain amount of ageism as well. What I mean by that is in some respects the system we have reflects the needs of the very elderly  - 'there's no rush' , 'wait and see', lets do another blood test in six months'. At the end of the day it's cancer and will do you serious harm one way or another. So, what am I trying to say?

There is nothing wrong with anger if it gets you somewhere

Screening programs work

Preventing illness (or catching it early) is cheaper than trying to cure it or treat it long term (and please stop thinking that new scanners or chemo or whatever is more expensive than doctors, nurses, radiographers etc time)

PSA testing is a small part of a gamut of medical tests that will point one way or another but it is a sentinel test (and its cheap)

If, as men of this generation, we choose to be proactive instead of victimising ourselves through ignorance then our sons and grandsons will benefit - just like our daughters and grandaughters have with their mothers experiences

 Gp's are human beings - if you think you need a test, screening or whatever then demand it or change your GP

 

 

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User
Posted 02 January 2018 02:00:30(UTC)

Just few further comments on this. On balance I am in favour of PSA screening in principle because it is a cheap test and will lead to some men who really do need treatment, having in. (Some men below the normal range of PSA for their years but who in fact have more advanced cancer will be missed unless there is a suspicious DRE or other symptoms which prompt scans and or biopsies). However, men who have a PSA higher than the range for their age may be checked to establish whether this is because of an infection or perhaps an enlarged prostate or maybe because of one of the other things that can give rise to a moderately elevated PSA. So this is something that can be checked out fairly easily at reasonable cost. OK, where other non PCa reasons have now been excluded for these men, plus those whose PSA's are very high and or exhibit symptoms, these men now proceed to have scans and biopsies or maybe the other way round. This imposes a requirement that the already under pressure NHS is struggling to cope with and of course the cost. It would not just be young men but men of all ages with increasing numbers referred with age.

Results of diagnosis would show many had PCa. The reality is that most of this men if left untreated would have cancers that would not cause them to die. But the natural reaction of the majority would be that if they couldn't have it cut out they would want it treated another way. This again would further add to the cost and the logistical need for more highly skilled staff, equipment and accommodation. Even those who agreed to opt for Active Surveillance require monitoring and scans. So such wide-scale testing would lead beyond what could be provided for a long time, even if there was a will and resources to do so.

Then there is the aspect of over-treatment. Many men are presently having treatment and suffering harms in respect of PCa that will never be a problem for them, something that would further increase if proportionally more men were treated.
Earlier in this thread the fact that women were more readily treated for breast cancer was mentioned. However, there is growing opinion now, not just in the UK but in other developed countries that too many women are being harmed via mammograms leading to treatment where the risk is unjustified. A link to this which provides other links and references is here. :-      https://evenstarsexplode.wordpress.com/

In short, the practicalities of facilitating wide-scale screening and the argument against over-treatment means it is most unlikely to happen. It is much more involved and complicated than it may appear.

Barry
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User
Posted 03 January 2018 07:25:01(UTC)

I honestly believe that men would benefit from informed choice. It is not the purpose of screening to find cancers that you are or are not going to treat. Its purpose is just to find the cancer (or the UTI or the prostatitis) that will enable men to make an informed choice - this is what is missing. I do not buy into doctors deciding what is good or bad for me (in fact I do not think most doctors do either). Naturally, I do not know anyone else's personal experiences but having gone through the system (including the 2 week wait - a system set up to ensure all suspected cancer patients are seen urgently) I honestly feel there is a place for screening. Just because our health system is perceived as overburdened and underfunded does not mean that men with cancer have less right to the same level of care, does it? At the end of the day I am sure that when other screening programs were initiated the same arguments were held against it. I am sure too that there are many other people out there who have been part of a screening program (for other illnesses and cancer) that are grateful they were called in, seen by a doctor and given a choice - whatever the outcome. Screening programs lead to learning - whether it is better testing, better treatment, better care or listening to the needs of patients, families or carers. It's ok to spend money on research at one end of the scale but I think there needs to be a push from the other. If you think screening is a waste of time then hands up who would be first to put their name forward for experimental treatment? And of those, who would wish that their cancer had been caught earlier?

User
Posted 03 January 2018 07:42:03(UTC)
I was devastated to find out that I had PCaq widespread through the bones last May but being told that it was incurable and that I’d had it for probable 10 years had me absolutely fuming at the lack of screening. I’m 60 and screening at 50 would have saved my life! I personally think it’s an utter disgrace that there isn’t a screening programme. If it were women and there was no screening for, say, Brest cancer can you imagine the outcry?
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Posted 03 January 2018 14:00:25(UTC)

It depends what you mean by screening - people say screening when they mean something else like 'proactive choice / education. Women do not get breast cancer screening in this country; it is a myth. The only true screening programme is for bowel cancer.

I do not support screening for PCa but I wholeheartedly support education for men, their female relatives and most especially for GPs

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


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User
Posted 03 January 2018 15:20:27(UTC)
Why don’t you support screening? In my case it may have caught the cancer early enough for it to curable
User
Posted 03 January 2018 18:25:50(UTC)

What do you define as screening?

In my mind (and in the minds of NICE, NHS and the government) screening is the mass testing of the people, usually with a parameter such as age (for example, there is routine screening of all newborn babies for certain genetic diseases). Other widely used diagnostic tests such as mammograms and cervical smear tests are offered to a cohort of the public when they reach a specific age range but even in the case of mammograms, the letter from the NHS reminding a woman that she is due a mammogram is accompanied by a leaflet setting out the pros and cons of getting tested and the risk of overtreatment. This is not screening; it is a public awareness service; over the 20 years that women are eligible about 75% will attend.

Only about 55% of people send their bowel screening test back within 6 months of receiving it. About 1 in 4 women never have a smear test despite being invited by letter (is that defined as screening?) every three years from the age of 24 to 64.



I also think that the PSA test needs to be explained to a man before it is done; there is no point testing a man who either would not want to know the result or would choose to ignore the result and refuse the medical advice he might then be given.

The government is moving away from women’s health screening so I don’t think there is a snowball in hell’s chance of it being introduced for men, particularly because the PSA test is even less reliable than a mammogram or smear test. In comparison, the bowel cancer test is quite robust. I prefer to continue raising money for the charities tha5 are trying to find a more reliable diagnostic test - if they ever discover a test that works, I will change my mind about screening. I also prefer to carry on lobbying for individuals (men or women) to be given the information they need to make good decisions, for all men to have access to a PSA test if they ask for one and either have symptoms or a reason to be concerned and most, most, most of all - pressure put on GPs to follow the existing protocol and stop refusing tests to men who need them! After all, you had a right to a test from the age of 50 and your GP could have reminded you that it might be a good idea but in the end it was your responsibility. If there had been a screening test from the age of 50, there is no guarantee apart from hindsight that you would have attended.

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


User
Posted 03 January 2018 20:19:28(UTC)
I understand the inadequacies of the current test but, since being diagnosed in May, I have come across a number of men who have incurable PCa but had no symptoms. Screening like that for bowel cancer is something we must strive for but at an earlier age and yes there should be a more reliable test. That way lives will be saved as mine might have been. I also hear what you say about my ability to ask my GP for a test at age 50. However, we have no family history, I had no symptoms so what would have driven me to seek a test. I had a vague understanding of the symptoms of PCa and, had I experienced any I MAY have sought GP advice but I had no reason to. I do think we have a responsibility to heighten awareness but even that wouldn’t have helped me. I find it very disheartening that GP’s seem to actively discourage men from having tests when they ask for them (like at least one of my friends GP has and has led him to change GP’s) without fully explaining the whys and wherefores.
User
Posted 03 January 2018 20:27:28(UTC)

I agree wholeheartedly with Lynn. It is education around the importance of getting tested which helps more than mass screening. I would add one thing. I agree that bowel cancer screening is good and reliable. It is set at 60 as I guess the stats suggest this is a good age to do it. A close of friend of mine was tested at 60, yes the test picked up bowel cancer but was too late and he died 8 months later. Another friend decided to take a private bowel screening at 55. It came back as needing further investigation and so then to the GP. Polips were identified and removed he remains fine 10 years on.

The research and education now going on through PCUK has changed behaviour as did the breast awareness campaigns for women a decade earlier. I am still alive because of the development of new drugs and more and more people are understanding what it is about. My PSA was 7.5 on diagnosis as incurable with bony metatestes. Would it have emerged on testing a year earlier and saved me. Who knows. I’m still here anyway.

User
Posted 03 January 2018 20:40:25(UTC)

The NHS describes the current breast cancer system in the U.K. as 'screening.' This is from their website.

'Breast screening is currently offered to women aged 50-70 in England. However, the NHS is in the process of extending the programme as a trial, offering screening to some women aged 47-73.
You will first be invited for screening between your 50th and 53rd birthday, although in some areas you'll be invited from the age of 47 as part of the trial extension of the programme.
You may be eligible for breast screening before the age of 50 if you have a higher-than-average risk of developing breast cancer (for more information, read having a family history of breast cancer).'

There are question marks over some elements of the screening programme but at the moment the benefits are believed to outweigh the disadvantages.

A really critical thing for me with Pca is that GPs are provided with more info and education on the issue. As I mentioned above - with his family history and the fact that he is black my husband should never ever have been sent away and told to come back for a test 'if you ever get any symptoms.'

Undoubtably there is a risk of overtreatment and things like serious infection from biopsies as a result of psa tests. (As there also is with things like breast cancer screening.)

On the other hand the risk of not increasing the awareness and number of tests carried out is thousands of men dying a painful, premature and in most cases (with early diagnosis) completely avoidable death.

There is absolutely no good reason for any man to now find out that they have prostate cancer at s stage when it has already left the prostate. And yet that is happening over and over again. After reading hundreds of research papers over the last few months (because I wanted a full balanced picture) I am now convinced that the current situation is completely indefensible.

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Posted 03 January 2018 21:00:18(UTC)

When I was diagnosed at 47 I supplied a urine sample as part of a trial after DRE which is trying to find a more accurate marker than PSA level. Not sure what it was. What I am sure of , is that I saw a Urologist aged 46 with sudden occasional ED and great reduction in ejaculate volume. Even PCUK mention ED as a rare symptom of PCa. It’s last on their list. Other than that I had no symptoms. Their answer was to give me TRT which only led to raise my T levels and feed an un-noticed Cancer. My PSA was 4 then 6 then 4 at age 46 to 47 and was basically ignored by my GP and private Urologist. Despite TRT warnings of regular DRE and T testing , it was only after 18 months of treatment that I demanded a psa test and DRE. My psa was 18 and ended up G9T4N1. In fact I remained on TRT until my operation. I’ve been advised to sue for medical negligence , especially having a very young son. Not sure I could cope with the extra stress.
It seems to me that many young men are being overlooked who are mostly asymptomatic but have unexplained ED. Often put down to stress or depression or alcohol or all. I don’t think PSA screening is the true answer at a younger age , but far better understanding of the disease and symptoms by GPs is a must. We feel I was totally misdiagnosed.




If life gives you lemons , then make lemonade
User
Posted 03 January 2018 21:10:19(UTC)

Originally Posted by: Online Community Member
I find it very disheartening that GP’s seem to actively discourage men from having tests when they ask for them (like at least one of my friends GP has and has led him to change GP’s) without fully explaining the whys and wherefores.

 

With the addition of the word 'some' I would agree with this statement wholeheartedly. But please allow for the fact that some GPs are brilliant, that many younger GPS are very knowledgeable about it because it is included in their training these days and many GPs will also be affected either directly or via friends or family. John was referred at the age of 50 with a PSA of 3.1; the doctor that referred him was a trainee on placement at our local surgery. Our family GP has learned about young men & PCa as we have gone along and I have no doubt that his knowledge and understanding of PCa, treatment options, side effects and ED treatments is far greater now than it was then.   

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


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Posted 03 January 2018 21:19:24(UTC)

Sallyy, that's my point. Many of the people who campaign for and raise online petitions to Government for PCa screening seem to have an idea that 'breast screening' is some magical thing that diagnoses and saves the lives of women. It isn't though - it is simply a letter reminding women that they are due a test if they wish to book one.

I have no objection to CCGs or GP practices being encouraged to send letters to men over 50 reminding them that they can have a PSA test. Research shows though that men are less likely than women to accept such an invitation (particularly if their mates have been laughing in the pub about fingers up bums) and if the rate for women is only 75% then it still comes down to education.

John was diagnosed because I bullied him - I like what the charity is doing with posters about PCa in ladies' toilets at motorway services ... I think that is the way to make progress with this horrible disease.

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


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Posted 03 January 2018 21:48:39(UTC)
Have to say that I feel nothing but anger about the current situation! I’m not ready to die at 60. I want to see my Grandchildren grow up! I can’t say hand on heart that if my GP had offered me a test at age 50 and every couple of years thereafter that I would have had one but at least it would have been my choice. What I can say is that I sent my bowel cancer test back pretty quickly and if I’d been offered a test at age 50 I may have taken it up. Interesting that screening/encouragement of early testing is offered elsewhere
User
Posted 05 January 2018 17:53:13(UTC)

I think everyone who has replied is making valid points which, if you put them together, would constitute a system (because it ain't systematic at the moment) that would provide men with more choice if proactively pursued by the NHS or your private health company. I never received a letter asking me to come for a PSA test. I did not even know that I could have asked for a test at age 50 (and I work in the NHS). Again, I go back to my previous posts - disease prevention is best (and cheapest), the earlier you catch cancer the better your prognosis, new treatments are all well and good but they are much more expensive than education programs or letters from your GP. Also, some cancers are now seen as what the NHS likes to call Long Term Conditions (LTC's) - that is you have them a long time and you live with the effects (like most prostate cancers). Good examples of these would be diabetes, ischaemic heart disease, Chronic Obstructive Pulmonary Disease, asthma and so on. A lot of these are seen as lifestyle related illnesses i.e. your diet, your job, smoking etc. Walk into any GP surgery and there will be loads of information dotted about giving you information about prevention, self care, treatment and check ups for all these illnesses. There is massive investment in LTC's in the UK. I wonder if there any health economists perusing this forum and I wonder if they could tell us if its cheaper to actively pursue prostate cancer routinely or to wait for it to become a LTC. Sadly, when i had my well man check a few years ago, I remember asking the nurse about a psa test and she replied along the lines of 'only if you have symptoms'. So I didn't get one. I am not angry with her because I suppose I could have insisted - but i could have also been referred at that point to my GP or other health care professional who would have had more knowledge and enabled me to MAKE A CHOICE. Health care systems that miss these opportunities or trivialise mens legitimate concerns are, in my opinion, broken. All men know that broken things need to be fixed.

The stats:

46,690 new cases of prostate cancer in the uk in 2014

11, 287 deaths in 2014

'Preventable cases of prostate cancer are not known as it is not clearly linked to any preventable risk factors'

These are, as far as i know, the current national screening programs available in the NHS:

Bowel

Breast

Cervical

New born (there are at least six of these)

Abdominal Aortic Aneurysm (celebrated its one millionth screened over 65 year old in 2016 with 10,000 aneurysms detected since 2009)

Diabetic eye screening

 

User
Posted 05 January 2018 20:26:09(UTC)
Interesting discussion about the semantics as to what constitutes screening programmes. Bowel cancer is very similar to breast cancer” screening” I.e. the targeted age group is invited to return their samples for screening. In my experience some people throw the kits in the bin! Also the invitation for mammograms is aimed at women of certain age group , they are also invited to attend a mammogram and in my experience, women in my village attended and cancers were detected so we formed a support group of women undergoing certain procedures.
I wonder if men would form a similar group as the screening programmes of PSA checks surely would follow certain postcodes and unearth men who could possibly have prostate cancer. I know that when my husband attended radiotherapy every day he said it was almost like a little club and they talked about their issues. If only men talked about their symptoms I’m sure that pressure forPSA checks would happen.
I know it’s a bit like bolting the stable door once the horse had bolted but anything that could be done, should be done. . In terms of LTC my husband has had prostectomy , adjuvant radiotherapy, hormone treatment, enzalutamide and now his PSA is 10 and increasing so now we face chemotherapy. Ten years when this life changing disease progresses I wouldn’t want to wish that on anyone if it avoidable
User
Posted 05 January 2018 23:40:46(UTC)

We know that with every year a man goes past middle age his risk of PCa increases significantly so in due course if he lives to average age he stands a greater than lesser chance of having it. Yet most men go on to die from something else because their cancers do not develop sufficiently. What is just as vital as a better PSA test and even more so in some respects, is a test or way of determining accurately those men who really need treatment and those who could just be monitored long term in case they confound predictions. Such a way of accurately predicting the advance of PCa in men would result in a major reduction in radical treatment for men who presently have it and suffer the adverse effects over treatment causes in many cases. It would also mean more effort could be concentrated on men who are more at risk and would benefit from earlier and better treatment, (a lesser need for so much RT for example but of more quality cutting edge).

But consultants have to use the tools they have now and they are overloaded and likely to be so for quite a time without drawing in and treating other patients. So logistically, there is a problem with the NHS despite what many may consider is desirable or even a 'right'. The NHS is under constant pressure as we know with many operations being cancelled this month and people waiting to be seen in corridors and ambulances and failed targets. More money would help but it takes time to recruit, train and retain high calibre medical staff.

Obviously we on this forum have a particular interest in Prostate Cancer, although some may also have other kinds of cancer or other heath problems outside cancer. So virtually everybody who has a form of cancer or other condition is in effect competing for more and better resources.  Then amongst many other demands on the NHS is the burgeoning cost of drugs.  Hospitals feel so underfunded that despite recommendations to the contrary they charge patients and in some cases even staff high car parking charges  to augment funds to provide health services.   It is not possible therefore for the NHS to be protractive to a degree that would be ideal.  People can be more proactive if they are able and prepared to pay privately for health checks and treatment beyond which the NHS can provide, either directly or through insurance cover.  This could in some circumstances mean going abroad.  Unfortunately, this means many will not do as well as they might if they had the ability to pay and will to do so.  This applies to other things of course, such as with private education and housing as examples.     

Barry
User
Posted 15 January 2018 19:24:03(UTC)

I do not believe that resource constraints abrogate rights or the duty of care owed to us by health care professionals. Going past middle age increases your chances of acquiring lots of different illnesses (and being run over by the Clapham Omnibus) - a lot of which are in common with men and women. Prostate cancer is a disease of men. Various contributors have remarked upon a lack of information or choice and I think this is where scarce resources are best targeted. Lets face it not a lot really goes on in terms of education or involving men in decisions about their health. I am sure there are women out there who are delighted to receive their cervical screening letters as a reminder of a simple sensible health precaution. Similarly there must women out there who ignore this screening but at least they know and have a choice which can then be respected no matter what ultimately happens. As a man i would have preferred to know and have a choice. If, like all good Brits, we join the queue marked 'waiting for the cure bus' I think some of us will wonder 'what if I'd received a letter or some sensible advice as part of a structured program of male health care' instead of wondering if or when you'll have the side effects of the current treatment which, in any case, won't cure us. Would we feel any better having reached that point and had letters, contact and advice from the age of 45 or 50 years onwards (or even before)? Would we feel good that, having had that simple advice, we are now disease free? You can see that screening (or sending letters or whatever you want to call it) is far more than a medical dead end for men who are part of a family, society and who have so much more to give in the future given the right circumstances. All I'm saying is lets make those circumstances right for every man and begin, as a society, by respecting our rights and framing a basic health advice system which encompasses rights, choice and the freedom to make our own decisions by becoming informed participants in health care instead of passive receivers. Is that too much to ask?

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Posted 15 January 2018 20:42:12(UTC)

I thought that was all already happening - there can't be many men who don't know that premier league footballers regularly wear the Men Utd man on their shirts, that sports pundits on the TV wear their Men Utd badge, that Jeff Stelling and friends complete numerous back to back marathons to raise awareness, Movember and all the events / activities that PCUK arranges. Women in motorway services would struggle to miss the posters on the back of the toilet doors - "does your husband / father have problems weeing - get him PSA tested" or similar. And then there is the education of younger men and boys - with major sports teams wearing Oddballs pants / hats.

I think there is quite a lot going on - although we can always do more!

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


User
Posted 16 January 2018 02:10:30(UTC)

I have also been an advocate of men being better educated in health matters and men being invited to discuss with their GP's about having a PSA at 50 or earlier if they are in a category that is more at risk. However, let's assume all this works so well that there is a great increase in take up by men. How could this be done in the UK when there is already a shortage of staff and equipment - something that even further additional money (should it be forthcoming) could not change in the short to medium term? It is all very well saying it is a 'right' but this ignores the practicalities of the situation. We know there are many things within the NHS that could or should be better. An example is the situation with life extending drugs where many are unable to get them. Not everybody in the UK has even been able to register with a dentist. Another 'right' might be to have a roof over your head but many are homeless, the worst in London being in Newham apparently, where according to Shelter 1 in 25 is said to be homeless. It follows that those affected are more likely to have health problems that impact on the NHS. This is not a stab at any particular Government but illustrates a few of the many demands on resources.

Barry
User
Posted 16 January 2018 21:39:02(UTC)
I hear what you say Lynn but no amount of awareness would deal with the huge amounts of men diagnosed with incurable PCa but had no symptoms like me
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Posted 31 January 2018 09:13:55(UTC)

Originally Posted by: Online Community Member

I thought that was all already happening - there can't be many men who don't know that premier league footballers regularly wear the Men Utd man on their shirts, that sports pundits on the TV wear their Men Utd badge, that Jeff Stelling and friends complete numerous back to back marathons to raise awareness, Movember and all the events / activities that PCUK arranges. Women in motorway services would struggle to miss the posters on the back of the toilet doors - "does your husband / father have problems weeing - get him PSA tested" or similar. And then there is the education of younger men and boys - with major sports teams wearing Oddballs pants / hats.

I think there is quite a lot going on - although we can always do more!

 

Hi. Well, here goes - I do not like football and don't know who Jeff Stelling is. If he were my GP I would have liked him to write to me inviting me for a PSA test as the older I get the more at risk I am. I use the motorway every working day and, due to my prostate cancer, have had cause to use the toilets in the services (and the B&Q on the A5) frequently. I can assure you there are no noticeable posters about prostate cancer. Sadly, my wife does not drive on the motorway or perhaps I could have been saved all the bother I have been through. The only education that has come of this is through me to my brothers - both of whom have now had PSA tests and one of which was raised. If you want to talk about things that are "already happening", why can't we talk about things that are not happening? Not every is GP wonderful, not every man is listened to, not every man knows his rights and no man, as far as I know, got a letter inviting him for a PSA test at any time as a precaution. Once again (and I would like an answer) - is that TOO MUCH TO ASK?

User
Posted 31 January 2018 17:35:12(UTC)

Part of the issue is not just the there is not enough public awareness - but also that the awareness exercises are not always accurate. In most cases they focus on particular symptoms - and yet for a number of men diagnosed with metastatic Pca there are no symptoms.

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Posted 31 January 2018 17:52:15(UTC)

Fabio, for my part and I don't need capital letters, yes that is too much to ask. I am responsible for my health, not my GP, not the consultants I see, not the NHS, just me. It is for me to be aware of the risks and to take action to minimise them. It is for me to seek out suitable tests and take them. Individual responsibility.

Perhaps when we have a reliable test for PCa, which the PSA blood test is not, a screening programme involving GPs or even hospitals directly, checking us out at a given age may be justified. Right now, it isn't. The best we have is the PSA test followed by the dread DRE for those with elevated readings, but that will continue to miss rarer cancers and those where the PSA remains low. Alas, it is an imperfect world.

AC

User
Posted 31 January 2018 18:36:53(UTC)
For what it's worth I don't see why men couldn't be sent an information pamphlet ( perhaps done in conjunction between NHS and prostate cancer UK) from their GP once they get to say 40+
It would then be up to men whether they want to put it in the bin or perhaps keep it in mind to get checked out.

I don't think it would cost a fortune to send a leaflet. You could argue that the cost of treatment must surely be less in the long run when the disease is caught earlier as 2nd and 3rd line treatments would not be necessary not to mention saving thousands of men the morbidity or failure of later treatments.

There must be lots of men out there who are not aware of symptomless prostate cancer or having low PSA but significant cancer. Not everyone is knowledgeable about this disease. Many still believe it is an old man's disease and you possibly couldn't have it your forties.
I don't think it helps that the media is always giving the impression that it's a disease you die with not of. We all know on here that isn't always the case at all.

Regards
Ann
User
Posted 31 January 2018 20:35:36(UTC)

Thanks for your replies so far. Nobody's right and nobody wrong. Nevertheless, unless somethings done the contact from healthcare professionals regarding this disease will remain a post code lottery. Good luck to all men with the right post code!!!!!

User
Posted 23 March 2018 06:53:44(UTC)

Ker-ching! Is this thread dead? 

User
Posted 10 April 2018 12:51:09(UTC)

Looks like we're getting a screening programme!

User
Posted 10 April 2018 13:47:22(UTC)

I don't think so Fabio - where have you seen that?

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


User
Posted 10 April 2018 14:38:01(UTC)
The press have picked up on this.75 million will not go far.

Thanks Chris

THERESA May will spearhead a new £75million prostate cancer research drive to fight the killer disease - expected to become the country’s most common cancer by 2030.

The PM declared men must be treated “earlier and faster”.

User
Posted 10 April 2018 15:02:42(UTC)

Thanks Chris - no mention of a national screening programme though; research into better diagnostic tools and better targeting of high risk groups which personally, I think is a much better way of spending £75 million. Hopefully, there will be some left over to speed up the NICE approval system for new treatments as well - and maybe even a bit to help men in the South West?????

https://www.newscientist.com/article/2165916-theresa-may-pledges-75-million-for-prostate-cancer-research/

https://www.healthbreakingnews.net/2018/04/theresa-may-set-to-pledge-75million-for-prostate-cancer-research-to-tackle-killer-disease/

I also saw this while browsing the £75 million announcement - great results on ADT + Abbytabby for T3 / T4 men :-)

https://www.independent.co.uk/news/health/hope-for-20000-prostate-cancer-patients-after-worlds-biggest-treatment-trial-a7770871.html

 

 

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


User
Posted 10 April 2018 16:53:48(UTC)

It’s also on the home page of this site. I had an email about this from Dr Iain Frame of PCUK this morning about this too.

 
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