Petition for National Prostate Cancer Screening Started - petition,PSA

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

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 ! )

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

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

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.

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

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

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

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

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.

Lynn you are becoming Mrs negative let Kev do his petition

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

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.

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

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