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Petition for National Prostate Cancer Screening Started - petition,PSA

User
Posted 05 Sep 2015 at 00:24

Yes a very interesting article and a clear indication that screening is beneficial all round.

Thanks for the link Roy

User
Posted 06 May 2016 at 08:41

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

User
Posted 01 Sep 2015 at 00:24

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

Edited by member 01 Sep 2015 at 00:43  | Reason: Not specified

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

User
Posted 01 Sep 2015 at 17:07

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 ! )

User
Posted 24 Aug 2015 at 08:34

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.

User
Posted 23 Aug 2015 at 20:47

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

User
Posted 23 Aug 2015 at 22:43

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

User
Posted 24 Aug 2015 at 01:58

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 

 

 

 

 

Edited by member 24 Aug 2015 at 02:31  | Reason: Not specified

Barry
User
Posted 25 Aug 2015 at 13:03

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

User
Posted 26 Aug 2015 at 00:45
I don't normally get involved in discussions like this as I know how they can escalate into heated comments, but this time I think being one of the men who was refused a PSA test at 57 because I was to young to have cancer, as it was an old mans disease I feel compelled to comment.

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

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

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

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

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

Roy

User
Posted 28 Aug 2015 at 23:59

Originally Posted by: Online Community Member

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

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

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

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

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

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

 

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

dave

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

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

 

 

Edited by member 29 Aug 2015 at 00:06  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 29 Aug 2015 at 09:46

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

 

User
Posted 29 Aug 2015 at 10:27
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

User
Posted 29 Aug 2015 at 10:45

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

Edited by member 29 Aug 2015 at 13:14  | Reason: Not specified

User
Posted 01 Sep 2015 at 12:46

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

User
Posted 06 May 2016 at 19:20

Kevin

I am sorry to hear things are not going well. Very well done for all your efforts, although I understand and respect the arguments and impracticalities of a screening programme, is it not better to have an over treated husband, father, brother, rather than a prematurely dead husband, father, brother. It is not great living with incontinence and ED but at least I am still here.

If only one person's life is saved as a result of your media appearances and publicity then you and we can be very proud of your efforts. 

As people have said getting the message across is the answer, PCUK launched their new advert a few weeks ago and in my opinion it does not get the message across, using an actor who has portrayed a light hearted character seems to be the wrong choice. There are many men's and women's stories on here that would be more hard hitting and get the message across.

Thanks Chris

 

 

 

User
Posted 24 Aug 2015 at 10:49

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

User
Posted 24 Aug 2015 at 11:50

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

Edited by member 24 Aug 2015 at 14:08  | Reason: Not specified

User
Posted 24 Aug 2015 at 12:52

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

User
Posted 24 Aug 2015 at 13:27

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.

Edited by member 24 Aug 2015 at 13:30  | Reason: Not specified

Barry
User
Posted 24 Aug 2015 at 22:28

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

User
Posted 24 Aug 2015 at 23:16

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.

User
Posted 25 Aug 2015 at 07:13

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

Edited by member 25 Aug 2015 at 07:16  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 25 Aug 2015 at 07:55
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.

User
Posted 25 Aug 2015 at 10:14

Originally Posted by: Online Community Member

 

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

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

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

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

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

 

Alan

 

User
Posted 25 Aug 2015 at 20:21

Lynn you are becoming Mrs negative let Kev do his petition

User
Posted 26 Aug 2015 at 15:28

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

User
Posted 28 Aug 2015 at 17:46

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

 

Edited by member 28 Aug 2015 at 17:50  | Reason: Not specified

User
Posted 28 Aug 2015 at 17:59

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

If life gives you lemons , then make lemonade

User
Posted 29 Aug 2015 at 02:05

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

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

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

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

User
Posted 29 Aug 2015 at 10:04

Quantum,

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

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

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

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

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 29 Aug 2015 at 10:16

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

Edited by member 29 Aug 2015 at 10:21  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 29 Aug 2015 at 13:12
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

User
Posted 06 May 2016 at 18:25

Thanks Kevin for all your efforts to help others, you are a inspiration to me and many others,that when faced with such a bleak out look. that you have the determination to try to make things happen for those  yet to face this awful disease. yours Andy

Edited by member 06 May 2016 at 18:31  | Reason: Not specified

User
Posted 09 May 2016 at 18:55
I was chatting with PCUK Amy and Merry on Friday about some stuff I have worked with them on that is being released this week, heavy reading stuff released to coincide with the National Dying Matters week.

They asked me if I had seen the advert and if so what I thought of it. I did say that In my personal opinion it was pretty awful. I suppose trying to get a very serious message over using comedy will always be a tall ask especially if they are aiming this at 2 or more generations. I just can't see a son talking to his Dad in such an awkward and nerdy way. However, if it gets watched and causes this kind of debate in pubs, clubs or at home and in the workplace then it will at least have raised awareness.

xx

Mo

Edited by member 09 May 2016 at 18:57  | Reason: Not specified

Show Most Thanked Posts
User
Posted 05 Sep 2015 at 09:03

Roy thanks for the link. No doubts it will stir the emotions. Also from past experience those strongly opposed to screening will blast holes through it, perhaps via the opportunistic aspect. However I leave that to them.

From my humble PCa guy view I read it as screening is better than opportunistic but it's not saying it's better than the current voluntary GP system, however full of holes, we have in place now is it?

Just my view folks.

Ray

User
Posted 06 May 2016 at 08:41

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

User
Posted 06 May 2016 at 12:38

Hi Kevin,Thank you for all your efforts with this particularly when you are severely effected by PCa . I have contributed to this as two generations have had it and two to possibly come....

Does anyone know what happened to the urine test(EN2?) . It was trialled by Surrey 2 years ago and under development by Zeus Labs. It was originally posted March 2014 by Cityboy,also called Kevin (don't know if you are one and the same.)

Best wishes to you in your continuing fight,Elajai .

User
Posted 06 May 2016 at 18:25

Thanks Kevin for all your efforts to help others, you are a inspiration to me and many others,that when faced with such a bleak out look. that you have the determination to try to make things happen for those  yet to face this awful disease. yours Andy

Edited by member 06 May 2016 at 18:31  | Reason: Not specified

User
Posted 06 May 2016 at 19:20

Kevin

I am sorry to hear things are not going well. Very well done for all your efforts, although I understand and respect the arguments and impracticalities of a screening programme, is it not better to have an over treated husband, father, brother, rather than a prematurely dead husband, father, brother. It is not great living with incontinence and ED but at least I am still here.

If only one person's life is saved as a result of your media appearances and publicity then you and we can be very proud of your efforts. 

As people have said getting the message across is the answer, PCUK launched their new advert a few weeks ago and in my opinion it does not get the message across, using an actor who has portrayed a light hearted character seems to be the wrong choice. There are many men's and women's stories on here that would be more hard hitting and get the message across.

Thanks Chris

 

 

 

User
Posted 07 May 2016 at 17:01

I agree with Chris -the advert is terrible and more likely to put men off being tested, Our son has already decided not to have his psa assessed despite his father's consultant's advice, Please sign the crowdfunding appeal if you can.

User
Posted 08 May 2016 at 18:53

Who is the actor, and where can the advert be seen please?

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 08 May 2016 at 20:17

I have to say I have 'liked' the new advert a couple of times on facebook just to get it shared a bit , but in my opinion ( and I'm terribly sorry PCUK who have been such a tremendous help ) it is quite terrible. I think it achieves virtually nothing whatsoever. I fail to see it even puts a point across ???

Edited by member 08 May 2016 at 20:18  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 08 May 2016 at 21:48
CB

The actor is Jeremy Swift who played a brilliant but rather humourous butler in Downton Abbey and The Durrell's.

The advert can be seen on youtube and I think there is a link on the site.

Thanks Chris

User
Posted 09 May 2016 at 08:18

Thanks for that Chris C, found it on U-Tube.

See your point Chris J.

No doubt someone thought it was a good idea. Comedy, well written considering it uses the "awkward" terminology that might have been used by a parent to a child 30 years or so ago.

Most parents I know use the name of the body part when discussing health with their kids these days.

The message is in there somewhere, among the comedy.

If it makes one man checkout online, and saves one man's life, it will have done some good.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 09 May 2016 at 13:02

It is also on tv between the football matches on Saturday. Sorry I was more impressed with Jeff's walk for Pca with friends.

User
Posted 09 May 2016 at 18:55
I was chatting with PCUK Amy and Merry on Friday about some stuff I have worked with them on that is being released this week, heavy reading stuff released to coincide with the National Dying Matters week.

They asked me if I had seen the advert and if so what I thought of it. I did say that In my personal opinion it was pretty awful. I suppose trying to get a very serious message over using comedy will always be a tall ask especially if they are aiming this at 2 or more generations. I just can't see a son talking to his Dad in such an awkward and nerdy way. However, if it gets watched and causes this kind of debate in pubs, clubs or at home and in the workplace then it will at least have raised awareness.

xx

Mo

Edited by member 09 May 2016 at 18:57  | Reason: Not specified

User
Posted 09 May 2016 at 19:46

I quite like it. Younger people that have had to experience 'that conversation' will recognise it and if it makes our children more aware then they might hassle their dads or grandads to get tested? Is it any worse than the posters in ladies' toilets?

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

User
Posted 09 May 2016 at 22:24
My girls saw the advert and both commented that they thought it was quite good too. They know what I'd gone through and related to it quite well. One said it wasn't 'heavy ' and was good in that the son was taking the lead in concern for his father . Any awareness is surely good ?

John

User
Posted 27 May 2016 at 23:14
Signed. My father has locally advanced Pca, my oh had contained Pca.

For me, its not so much about a screening programme, more that if men want a test, they shouldn't have to justify their reason.

User
Posted 17 Oct 2016 at 20:44
Rest in peace Kevin and condolences to your family.

Thanks Chris

User
Posted 17 Oct 2016 at 23:00

I'm very saddened to hear this news.
Kevin seemed like a man of strong principle.
I hope his legacy will be the introduction of screening as soon as viable.

User
Posted 18 Oct 2016 at 00:54

Sleep peacefully Kevin

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

User
Posted 18 Oct 2016 at 12:59

RIP Kev

I've since signed the petition. I'm not sure if I am in total agreement with a national screening programme but if nothing else this will help to raise awareness which Kev was clearly passionate about.

Pity his thread turned pretty sour in some parts ....

Bri

User
Posted 18 Oct 2016 at 15:08

so sorry to hear this news as Kevin campaigned for national screening even though his outlook was bleak ,who also went on radio and tv so others may benefit in the future RIP Kev

Edited by member 18 Oct 2016 at 21:43  | Reason: Not specified

 
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