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 09:21
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We can't control the winds - but we can adjust our sails |
User
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
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 12:14
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User
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
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 31 Aug 2015 at 23:43
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
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
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
Well said Lyn. It was the start of a debate. You made one point. I made another. Nothing personal and I am glad you see it that way.
Pity about the comments, but hey ho I have broad shoulders,and other things to think about.
Still passionate about testing though! Just a thought, if NHS chased all the health tourist's there would be money available for lots of treatments and or tests.
User
http://www.practiceupdate.com/journalscan/20990/1/3?elsca1=emc_enews_expert-insight&elsca2=email&elsca3=practiceupdate_uro&elsca4=urology&elsca5=newsletter&rid=NjE5MzY2MjMzMzAS1&lid=10332481
Roy
User
A very interesting read Roy and makes the need for screening clear cut. Andy
Edited by member 04 Sep 2015 at 19:25
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User
Yes a very interesting article and a clear indication that screening is beneficial all round.
Thanks for the link Roy
User
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
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
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
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 17:31
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User
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
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
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
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 19:18
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If life gives you lemons , then make lemonade |
User
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