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Why we need this group

User
Posted 08 February 2016 13:09:43(UTC)

I was diagnosed with prostate cancer in February 2014, at the age of 48.  I had gone to my GP a few months earlier because I was exhausted as my nights were so disturbed by the need to pee (often 6 or 7 times a night).

My GP did a urine test to rule out diabetes and did a digital rectal exam (DRE) and described my prostate as perfectly normal.  He also conducted a PSA test, just to be 'rule it out' and that came back with a reading of 2.6 microg/L and described as borderline for age (although I understand that there are no guidelines below the age of 50).

It would have been easy for that to have been the end of things - my GP had run out of ideas and I could so easily have decided I'd just have to put up with the lack of sleep and get on with it.  But I didn't - I insisted that something was wrong and reminded my GP that I have private medical insurance through my work.  This elicited a referral to a urologist.

The urologist repeated the DRE and to his expert fingers, something felt not quite right.  Although my prostate was normal size, he thought that one side of it felt a little firm.  A biopsy followed and I was diagnosed with T2C Gleeson 3+4 prostate cancer.  I went on to have a radical prostatectomy in June 2014 and(with a few ups and downs) everything is looking good for my future.

Things for me could have been very different.  Before all of this I knew where my prostate was, but had no clue what it did or the risks and signs of prostate cancer.  Many men turn a blind eye to medical symptoms (especially anything to do with the trouser area) and just hope that things will sort themselves out; some of them are literally dying of ignorance.

We need to raise awareness in men including men under the age of 50 - this is not just "an old man's disease" - and we also need to better educate the medical profession that prostate cancer can be a risk for younger men.  I have been struck by stories from other men who have been dissuaded from having a PSA test by their GP, only to be found to have prostate cancer at a later date.  The earlier prostate cancer is caught the better the prognosis for the patient.

One such example is the courageous Kurt Jewson, who's Facebook post recently went viral.  In his original post, Kurt tells how he went to his GP with blood in his urine and was told that it was probably just an infection and would clear up.  The GP did not carry out a PSA test, most likely because Kurt was just 44 at the time, but a year later he was diagnosed.  Kurt had to undergo surgery, radiotherapy and chemotherapy - how different might that have been if his GP had carried our a PSA test and Kurt had been diagnosed 12 months earlier?

My urologist told me that if I had not been diagnosed when I was, I would have been back within 5 years in pain and too late.  I will turn 51 in a couple of weeks and thankfully, there's an excellent chance that I'm free of prostate cancer as well as my prostate.  

I'm now determined to make a difference through raising awareness of the risks to younger men and supporting those diagnosed below the age of 50.  I believe that the impact on these men (often with young families and in some cases still planning one) is significant.  Being younger doesn't make them a different species, but it does mean that they're likely to have different priorities and heightened concerns about issues such as erectile dysfunction and incontinence - in the months after my operation when nothing worked and I was leaking everywhere, there were times I thought my life was over (or it would be better if it was).  I looked for a support group and could not find one that I could relate to as most of the men were a generation older than me.

Each of us has our own journey with this disease and it can be a rocky road.  I'm in a good place now and I hope that my experiences can benefit someone as they progress through their own journey.  That's why I think we need a group targeted at younger men.

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User
Posted 13 February 2016 01:54:38(UTC)

Steve,

I have read this conversation through several times and can't see anything patronising in any of the replies to your post thus far. Members very occasionally disagree as for example on screening as debates over the years has shown. You seem to be upset because the balance of views expressed differed from yours on the question of the separate section for 'younger men'.

We are with you in advocating greater awareness of PCa including a better understanding and cooperation by GP's.

Members have contributed to the PCa cause in many ways, organising various events, raising money, entering treatment trials and reporting on them, answering questions of new and existing members and reporting on research on matters directly or indirectly related to PCa. Also, most importantly members support each other on a frequent and ongoing basis which requires a lot of time and empathy. To criticize members responding in good faith is totally unjustified in the circumstances and not acceptable,  even from a newbie not familiar with the forum.

Barry
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User
Posted 14 February 2016 18:26:45(UTC)

So Mariar,

You get your kicks by going on-line where you can ridicule cancer victims, not only that you also send them abusive private messages.

I bet your mum is really proud of you.

:)

Dave

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User
Posted 12 February 2016 21:17:24(UTC)
Steve
the admin people started these special sections because they were concerned about people just like you not being attracted to post and get the support that is here in spades.

I think it is rather sad that there needs to be a differenetiation. I was 55 when my Husband was diagnosed and 56 when he died, now I don't consider that old. The issues we had were a million miles away from yours but I think my knowledge of this disease, my education and ongoing education should mean that even if I don't have answers I know where to get them.

I try to give practical help and advice to both men and women on this forum, I really hope I do not patronise anyone who posts.

The one thing Sadie and the others were worried about was prejudicial posts from the existing forum members, I think she was worried for the wrong reasons.

Mo
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User
Posted 08 February 2016 13:17:10(UTC)

Hello Steve and welcome to the site and well done on your first post.

We do have a few men on here in their 40s who are having to live with PC that is incurable so too late for them but yes, if a man feels something isn't quite right then he should insist on a follow up.

We can't control the winds - but we can adjust our sails
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User
Posted 08 February 2016 15:10:05(UTC)
One of our Members Is campaigning at the moment for national testing of men, across the board for men from 50.

I do not want to mention names on here but he may be along soon to comment.

There are quite a few young men and/or wives on here too. I was 38 when my OH was diagnosed and heavily pregnant. To be faced with the question " do you want any more children" in a consultation with an oncologist adds another complication to matters. We could not think about " sperm freezing" we were so pole axed by the diagnosis. Upon reflection we reacted too quickly as our options are now gone.

Younger women/ couples need some different support to the more mature couples who have completed their families.

My experience of this site is that these younger people can be accommodated and supported within this group. Afterall, as time passes by, we are not quite as young as we once were, and I now see younger women than me on the site, when I joined I was about the youngest.

Also, the people on this site are so supportive and knowledgable that they are a great resource to all newly diagnosed men, whatever their age. plus on the whole they are not that much older!



All the best

Alison
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User
Posted 08 February 2016 19:59:38(UTC)

I agree with you Alison, although in theory the younger men might feel better in the company of folk their own age but those youngsters will not have the experiences of PCa that older men have ( they will have when they are older)

All men and their OH's have stories, advice and a wealth of knowledge to share with others no matter what age they are.

Steve, I can see where you are coming from and completely understand your reasoning but I think there is a downside to your theory as well.

Short and sweet I know but that's my view.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

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User
Posted 09 February 2016 01:10:53(UTC)

Hi Steve,

Welcome to the site, like you I thought that I was too young when I was diagnosed at 54.

Since then I have done all that I can to learn about PCa, and to raise awareness and help others, however I am not sure that there are any easy answers.

Mass PSA screening of all men has often been suggested as a solution, and it might lead to early diagnosis and save some lives.  However it might equally be counterproductive. 

For example had you merely been PSA screened, you would have been simply listed as 'normal', and there is a lot of concern about the false reassurance provided by low PSA levels from men who have active cancer.  Equally many men have high PSA levels without any apparent cancer.

So there are many who think we need something better than mere PSA screening. 

There was something on this site a couple of months ago about a new experimental approach in Sweden where PSA testing is combined with DNA screening and that seems to offer hope for the future.

Dr Richard Ablin has a lot to say on this topic, he is one of the doctors involved in the initial development of PSA testing, just Google his name and you will find lots of articles, indeed just Google PSA and you will find lots of arguments and strong views from both sides.

I have to say that the last eight years of reading all I can find on the subject has left me more confused than ever.

:)

Dave 

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User
Posted 09 February 2016 02:15:52(UTC)

Hi Steve,

Good that your cancer was discovered early giving you best chance of cure, even if you had to push things along yourself.

I think we all agree that GP's should be better trained in picking up on symptoms of Prostate problems and initiating appropriate action. Many of us feel that a National Screening programme for PCa should be in place for men at the age of 50 or earlier where they are at increased risk. (Even this would mean some younger men with PCa would miss the net). However, others, even some members with PCa on this forum, take the view that National screening should not be implemented in this way. The main arguments reasons against are that this would lead to more treatment, some of it being unnecessary and leading to avoidable harm. It would also result in greater cost and require a considerable increase in medical staff and equipment. UK Governments have opposed National screening. This is a subject that has been debated on the forum and by others from time to time at some length.

This Charity, along with others does campaign to make men aware of Prostate Cancer. As you advocate, it is important that the message reaches younger men so likely cancer is found earlier which gives the best chance of outcomes.

As far as this forum is concerned, men and very often their partners, family members or friends have raised a wide range of topics that have been openly discussed (and can be supplemented by private message if helpful). All the body and sexual functions have been discussed and even posts as for example affecting 'swingers', so I can't see why any differentiation for age is necessary. I think you will see what I mean if you look back through some of the threads (conversations as these are now termed). The Moderators have started a younger persons area  so we will see what is so particular that it needs to be in a separate area. This forum offers help to all affected, directly or indirectly by PCa. By clicking on a member's Profile and Bio you can see their details and follow their progress. Unfortunately, the search facility is one area that was good in the previous format of this forum but is now hopeless because it has been filled with so much irrelevant material.

Barry
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User
Posted 09 February 2016 06:56:33(UTC)
Hi Steve

I was 49 when diagnosed with advanced PCa, my dad has PCa but well under control for 10+ years. No one told him to warn me. Our common go never mentioned it to me so awareness pre 50 with testing for all with family history before that.

All the best for your future

Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
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User
Posted 12 February 2016 16:40:50(UTC)

It's not just a "theory" that younger men might feel better speaking to people nearer their own age, it's a reality.  I'm a bit frustrated by the patronising tone take by some of the responders.

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User
Posted 12 February 2016 17:13:42(UTC)

Hi Steve,

Hopefully you didn't think my post was patronising?

I guess at 62 you might think I am of an older generation.

However there is a saying that inside every old man, is a young man reflecting on life and wondering what happened?

When I was first diagnosed I was a mere 54, nowt but a lad, but over the years I have learned a lot on this website, not just from men of my own age, but older guys as well and dare I say it from women, many of whom know an awful lot about PCa having watched their loved ones fade away.

I responded to your point about PSA testing, not to appear patronising but merely to give you the benefit of what I learned.

When I was first diagnosed PSA screening was a 'no brainer'.  It appeared to be a simple way of erradicating PCa if only every man at 50, or 45 if you wish, had his PSA tested, the doctors would be able to quickly and simply intervene saving countless lives.

However as I have grown older, and hopefully a little wiser, and learned more about the subject I have learned that things are rather more complicated, PSA screening is one of those issues which isn't quite as simple as it first appears.

I have learned lots of useful tips from the guys and girls on this website, on occassion they have helped me accurately diagnose my problems and while it might be a little dramatic to claim that the wisdom of this website has saved my life it has certainly given me the information I needed to steer my doctors in the right direction.

I have accepted postings at face value, the age or indeed the sex of the person posting has never been a factor in judging the merits of what they have to say.   

:)

Dave

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User
Posted 12 February 2016 21:17:24(UTC)
Steve
the admin people started these special sections because they were concerned about people just like you not being attracted to post and get the support that is here in spades.

I think it is rather sad that there needs to be a differenetiation. I was 55 when my Husband was diagnosed and 56 when he died, now I don't consider that old. The issues we had were a million miles away from yours but I think my knowledge of this disease, my education and ongoing education should mean that even if I don't have answers I know where to get them.

I try to give practical help and advice to both men and women on this forum, I really hope I do not patronise anyone who posts.

The one thing Sadie and the others were worried about was prejudicial posts from the existing forum members, I think she was worried for the wrong reasons.

Mo
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User
Posted 13 February 2016 01:54:38(UTC)

Steve,

I have read this conversation through several times and can't see anything patronising in any of the replies to your post thus far. Members very occasionally disagree as for example on screening as debates over the years has shown. You seem to be upset because the balance of views expressed differed from yours on the question of the separate section for 'younger men'.

We are with you in advocating greater awareness of PCa including a better understanding and cooperation by GP's.

Members have contributed to the PCa cause in many ways, organising various events, raising money, entering treatment trials and reporting on them, answering questions of new and existing members and reporting on research on matters directly or indirectly related to PCa. Also, most importantly members support each other on a frequent and ongoing basis which requires a lot of time and empathy. To criticize members responding in good faith is totally unjustified in the circumstances and not acceptable,  even from a newbie not familiar with the forum.

Barry
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User
Posted 13 February 2016 10:47:01(UTC)

Hi, along with the others I do not think that there were any comments given that were "patronising" and on my particular response I have merely given a point of view that is offering another perspective to the one given by you.

I understand where you are coming from and can see your point but this is not a club where because someone is older or of a different sex they have to stand in a different part of the dancehall.. Surely any advice offered is irrespective of age and given in good faith and sometimes it may apply or sometimes not. It will be up to you if you see some use for it.

Not sure if you think that being younger sets you apart from an old un or not but it is common sense to take advice from someone with experience?

Regards Chris/Woody

Life seems different upside down, take another viewpoint

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User
Posted 13 February 2016 12:05:08(UTC)
I too certainly did not meant to patronize anyone.

I was just saying that at 38, I seemed to be a young member of the forum, yet found the advice from everyone invaluable.

There are quite a few young wives on here who I exchange comments with, along with everyone else.

That is my experience of the site.

Best wishes to everyone

Alison
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User
Posted 13 February 2016 13:25:46(UTC)

A shame this conversation is now about what and how we have said things, all intended to help another member.

If I think I can help - I do, irrespective of their age, or what sex the enquirer is

There is nothing patronising about offering advice, a listening ear, a shoulder to lean on, and I am damned certain that it wasn't anyone's intention to come across like that.

Being diagnosed with any cancer, at any age, is horrible. In this case, PC with it's accompanying possibilities of major and permanent life changes.

Please, let's continue to offer our help and advice to anyone who asks. I probably would look at a different section just for the "young uns" but I might feel inhibited about answering on the basis they are looking for "young" answers and at my age all I can offer is experience.

I don't patronise - I care !!

We can't control the winds - but we can adjust our sails
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User
Posted 13 February 2016 21:43:26(UTC)
Hi Pickled,
I am realy sorry that you found some replies patronising, it's a weird old world that we live in and yes I can see why you thought that some replies were patronising . So yes I get it but I don't know if you have grand parents and how annoying they can be. Well some members on here are probably old enough to be your grandparent and yes they can be so annoying but and I will emphasise the BUT they have been there done it and got the T shirt.
Sorry but I was one of the people that opposed a younger men section , here me out my OH is in politely correct terms Afro Caribean or take away the subtitles BLack , I am assuming that you are not black and just younger than most men diagnosed with PCa.
My worry was just how many sub groups would we need to have, I am assuming that most of us would have at some point had to fill in the the questionare on what ethnic background you belong to.
White
Black /white
Chinese
White / Black .born in this country
Or the dubious please specify other
There are probably at least 20 options.
Would we need a younger men sections view point on the PCa forum, would we need a black section , or an Asian section, or a over 80 section. My point being that the forum is open to all, it doesn't matter whether you are young old , black /white or skoobie doo the only link is PCa.
For sure we don't always agree with each other on here and there has been many a moment of pistols at dawn, with so many opinions we are not always going to agree, but and I am famous for my BUTS every opinion and view matters because we are all linked with this horrible disease, age brings a wisdom and wealth of knowledge.
Please don't feel that that you are being patronised , we are all here to help , advise and give a shoulder.
PCa is the enemy not the forum , sometimes we don't get the responses that we would like but that just shows the diversity of the forum, there is so many different personalities all giving their take on things. I like to think of it as my family at times totally infuriating but always loved.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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Posted 14 February 2016 00:04:47(UTC)

Hi Julie , you have summed it up beautifully. It is the horrid disease that unites us. Young,old black,white or brindle. Maybe I need my own group being from the other side of the world. But you know I feel comfortable and accepted here . Cheers Georgina

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User
Posted 14 February 2016 07:36:59(UTC)

Oh dear ------- here we go
Rattle rattle Buuuzzzzzzzzzzzzzz
And they're off !




If life gives you lemons , then make lemonade
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User
Posted 14 February 2016 07:53:36(UTC)
My turn now!

I don't think anyone intends to be patronising on here.
All I've found here is the most amazing support and advice. We can each take from it whatever we wish.

It's an avenue for us to seek reassurance when things are not so good for us and in return we can offer our own experiences and thoughts which hopefully may help others.
And to share the good news (if it ever comes).

All I can say is a huge thank you to everyone for sharing their thoughts , experiences and advice whilst each of cope with this disease at whatever stage we are at.
I was in a bad way emotionally by the of 2015 post RT. I still have HT s/e.
But when I first posted here last December the support I received was awesome. And now I can cope far better.

John
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User
Posted 14 February 2016 09:04:00(UTC)

Hi John, exactly my sentiments as well, there will always be one or two that kick out against anything good maybe because they are blinkered but you can lead a horse to water.......... As they say.

This thread has lead into a them and us situation, wouldn't it be nice if it settled into a discussion rather than a slanging match.

I have been on this site for a year now (Dx Feb 2015) and not once have I seen anything "patronising" posted on here so why is it an issue now.

There are some incredibly knowledgable contributors that have taken the time to find out some of the real facts associated with PCa and are prepared to keep us updated whenever the need arises and that is to newbies, long termites, OH's and all.

Well done to them(they know who they are).

From my point of view I came on here seeking help and support and can honestly say I got it and at the same time with the limited knowledge that I have now since Dx have been able to take part in helping others in my way by reassuring and backing up other contributors, surely that is what it is all about?

Information gathering before proceeding on the path of treatment is so important and if it is left to dr google searches so many people would be so confused or scared off. People that have knowledge and are willing to impart it are not young or old, it makes no difference, they are just helping.

Best wishes to all, Chris/Woody

Life seems different upside down, take another viewpoint

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User
Posted 14 February 2016 09:23:59(UTC)
Chris/ Woody,

Thanks for the reply.

As you say there are some regular conductors who are outstanding in the help and advice they give. And extremely knowledgable too.
The care that they show is fantastic. Cannot name names but as said they should know who they are.

John
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User
Posted 14 February 2016 09:41:25(UTC)

Information CAN be obtained from Dr. Google, not all of it relevant, a lot of it is from another country where the health system is different as are treatments.

What is good about the advice offered on here is that it is personal advice, the person/s having been there and done that and I've no doubt also got the T.Shirt and long may they continue to offer that help to me and others.

I could ask questions of a doctor at John's next appointment and he'll give me a clinical answer. It's unlikely that he will give me information based on what it was like for him.

 

We can't control the winds - but we can adjust our sails
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Posted 14 February 2016 09:47:16(UTC)

Back to Steve, I think your point is generally about getting men checked at an earlier age is what we should be concentrating on and finding a way to re educate or better inform GPs about early detection and not to stand in the way of early diagnosis. Not only will it save lives but when caught early will save the NHS money.

It is good that you want to find your way to helping those that may be at risk and wish you well.

I also agree that as far as younger people accessing information relating to their age and problems it may be an issue if there was an upper age limit as us olduns (66) still are/want to be active on the ed front so information for the youngster would be the same as to us.

I hope this thread can produce an outcome that helps us all.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

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User
Posted 14 February 2016 10:49:28(UTC)

Whinging, moaning and being outright rude always welcomed on The Dark Side

 

http://pcasupportforum.proboards.com/

 

I used to be in the top three posters here but the new format sucks and isn't easy to follow. Most welcome and those that aren't know who they are

 

Nil desperandum

Allister
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User
Posted 14 February 2016 11:08:09(UTC)

I started on Dr Google and it frightened the life out of me. I was so grateful when I found your site. It was a life saver.

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Posted 14 February 2016 16:27:29(UTC)

Hi Guys,

All through my life I have seen structural problems within organisations, which people are very quick to personalise, blaming each other instead of sorting out the root of problem.

I think we have something similar here, I think many of us, certainly me included, may have missed a trick wth this conversation.

Steve may have created his initial posting in the 'Younger Person' section, assumming that the only people who would see it would be those specifically looking in the 'Younger Person' section.  Hence his title 'Why we Need this Group' was referring specifically to the Younger Person Section.

However a great many of us, me included, do not routinely search within each individual topic areas and merely click on 'Recent Conversations', hence his post read as though the group he was referring to was the entire PCUK online community.

This leads to confusion, arguments etc, which is unhelpful as we are all trying to help each other.

I won't start suggesting a remedy as a lot of people have put a lot of effort into making this website user friendly, but it may be helpful if we all draw breath, stop arguing and give some thought to the real problem? 

:)

Dave

 

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Posted 14 February 2016 18:26:45(UTC)

So Mariar,

You get your kicks by going on-line where you can ridicule cancer victims, not only that you also send them abusive private messages.

I bet your mum is really proud of you.

:)

Dave

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Posted 14 February 2016 19:54:07(UTC)

Good to see a post from Allister (Alathays), who for a long time was not only a prolific poster but benefited this forum with his knowledge of PCa from his own experience and from a lot of research and involvement. I do agree with him, that when the forum format was changed the opportunity to improve it was missed and that in some respects it is not as good as the old format even, which I believe was the main reason for starting his forum.

Men diagnosed with PCa can be angry, worried about the life changing effect it can have, not only on their lives but those of their family and friends, what treatment they can have and various other concerns about poor medical support, etc, etc. It is not surprising that some men express their feelings strongly, even sometimes concluding by saying something like 'rant over'. Regardless of what prompted such a post, forum members have always sympathized with the member and offered a shoulder to lean on. However, being critical of members that are only trying to help is something else.

 

Barry
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Posted 14 February 2016 21:09:15(UTC)

Mariar,

You give yourself away! You say how awful this forum is and that you are alone yet clearly come back and even post under a separate identity. If you were indeed previously a member, why not give your past username so we can review some of your posts and see where you have allegedly been let down? Your childlike responses don't help, perhaps a reason why you were apparently not taken seriously previously, if indeed you were a member. But I believe you are either 'high' on something (honey?) or a troll in which case to use your own language, why not Buzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz------------------------------off!! I wish to spend time with people who want to be supported, not those who play games.

Barry
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Posted 14 February 2016 21:53:23(UTC)
⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑
I think that should be enough for everyone, couldn't agree more with you Barry, for someone who hates the forum members this person who won't even identify them selves is sure spending a lot of time on here.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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Posted 15 February 2016 14:29:25(UTC)

Perhaps my original post was too long, so I will respond to specific points raised in a series of replies rather than writing another long post.

It seems that a comment I made elicited some replies relating to individual grievances within the community that I cannot and will not comment further on as I do not know what those issues are/were.  All I will say is that I found some of the replies to my post patronising - they may not have been intended that way, but that was how I perceived them.  Despite kind words, they seem to suggest that my view is not as valid as others who are older and have been members of the PCUK community for longer than I have.  I sincerely hope that is not the case.

I truly believe that younger men with prostate cancer can benefit from the experiences and guidance of others who have been there regardless of their age.  However, I also want to make it easy for younger men to find others that are closer to their own situation.  This is certainly the message that I have heard from other younger sufferers and their partners on a forum elsewhere and it was something lacking when I was first diagnosed.

If I take Trevor Boothe's analogy of the PCUK On-Line Community being a family, there are times when family members want to go into a separate room for a more private conversation.  I had hoped that the community could offer a home for younger men to talk and share their experiences - I'm rapidly concluding that this forum would not be ideal for that.  Whilst I can envisage some men jumping straight into the wider community, I strongly suspect that would be the minority.

I would love to hear the views of others in a similar situation to myself, i.e. diagnosed before the age of 50.

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Posted 15 February 2016 14:53:00(UTC)

Hi Steve
I've tried to avoid this post. I don't know how I can explain this. Click my picture and read my profile if you want. I'm 48 , have had the op , and am basically not in a good situation cancer-wise long term. Also I'm bi- polar and when I joined this group believe-you-me , they all had the chance to push me away because of my doom gloom negativity and my desire for no treatment and all that entails. But EVERYONE helped me in their own ways and supported me and to be honest I don't know where I'd be if I hadn't had people to talk to or been able to discuss treatments. I might have had one or two slightly negative points about my mind , but those points were respectful of my feelings.
There ARE small cliques within the forum , and some people meet regularly outside of it. And I'm not sure others get an invite. But even I had a small group for a while that we're having treatment at the same time as me. Happily they seem to be in the cure camp and have left.
Honestly , the group is good and solid and reliable and very helpful. I was one of the people that agreed a separate space was a good idea for younger men maybe or for people with different sexual orientation, but I'm not sure it will work -- and to be honest it's not been running long.
Someone was just out being a bit of a troll over the weekend. It happens on all sites. It didn't bother me at all. Best not to rise to the bait. If people have a genuine grudge they should approach the moderator.
All the best
Chris




If life gives you lemons , then make lemonade
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Posted 15 February 2016 15:02:22(UTC)

Johsan said that we "have a few men on here in their 40s who are having to live with PC that is incurable so too late for them", my heart goes out to them.  One of the things I want to achieve (through working with PCUK and the Movember Foundation), is to raise awareness of the risk of prostate cancer to men below the age of 50 (see the links to Kurt's story in my original post).

There are 2 sides to this:

1. Educating Men

It's hard for me to imagine now, but two years ago, I was scheduled to have my biopsy and at the time I knew so little about the prostate.  I knew where it was, but it was pretty much a mythical organ - never spoken about and I didn't really have a clue about what it did.  And I'm not alone.  How is it that men can get to the age of 40+ without knowing what their prostate is, when it's home to the cancer they're most at risk of getting?

Men (particularly younger men) are rubbish about talking about their health, especially things like this.  I work for a large IT company and approximately 80% of our workforce are men.  When they held sessions on Women's cancer awareness, the conference rooms were packed out for every session; when they held the equivalent for Men's cancer awareness, just 6 people turned up (and one of those was a woman, concerned for the health of her husband and son).

We need to change this and do a much better job of educating men (and their partners) and getting them to go to their GP when they need to.  I'd like to get more men with prostate cancer to act as champions in their workplaces and the wider community.

2. Educating Health Professionals

Is it acceptable that a man can go to his GP with blood in his urine and be told that he's too young for a PSA test, only to find out a year later that he does have prostate cancer.  This is what happened to Kurt Jewson (see the links in my original post); how much further did the cancer develop in that year and what consequences will the delayed diagnosis have to his health, life and family in the long term?

Kurt's is not the only such story I have heard of younger men being refused even the diagnosis step of having a PSA test and one of those cases is very dear to me.  Following my diagnosis, my younger brother told me that he had been to his GP with blood in his urine and that he had had a DRE but everything was "normal".  I explained that two DREs had also said that there was nothing wrong with my prostate and, at my request, my brother went back to his GP.  As in Kurt's case, my brother's GP told him that (aged 47) he was too young for a PSA test and sent him away - despite the fact that I, his brother, had been diagnosed at age 48!!!  I worry every day about this.

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Posted 15 February 2016 15:25:21(UTC)

Chris J you are a star - thank you so much for responding and sharing that with me.  I really appreciate it.

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Posted 15 February 2016 15:39:12(UTC)

Alison, thank you for alerting me to the fact that someone is campaigning for national testing for men age 50+, if someone can connect me to this person/campaign, I'd be grateful.

I am familiar with the arguments for and against national screening and the fact that some countries do choose to operate such a programme.  I think we should be continually reviewing the evidence for and against and searching for a more reliable test, albeit that that doesn't suit the interests of big business.

The NICE guidelines appear to specify no age constraint for PSA testing for men that present with potential symptoms of prostate cancer, but in practice it appears that many GPs try to stick to the separate, NHS restriction of men having to be 50 to be tested.  The NHS guideline is about men who request routine testing and requires the GP to counsel them on the pros and cons before going ahead.  I do not believe that it was intended to prevent men below the age of 50 being tested if they have symptoms and I'd like to see all men with symptoms being tested, regardless of age (read Kurt's story linked to from my original post if you are in any doubt about this).

Personally, I would also like to see PSA testing made available to men aged 40 and over where they are at enhanced risk.  This would include men who have a close familial link to someone who contracted prostate cancer at a younger age.  

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Posted 15 February 2016 15:45:42(UTC)

davekirkham, thank you for explaining the potential source of confusion due to the design of the community site; it certainly was puzzling to see references to "Dr Google" in the stream, which appear to be totally off topic (presumably intended for a discussion re our dear Health Secretary, Jeremy Hunt).

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Posted 15 February 2016 15:48:08(UTC)

alathays, thank you for the link to the pcasupportforum - I will check it out!

User
Posted 15 February 2016 16:12:44(UTC)

Hi Steve,

We had a fool posting offensive stuff on your conversation yesterday.

Several respondents complained and the website management have removed his posts this morning.

So some of the other posts may now appear a little illogical.

99.9% of the people on this website are sensible, but there is always the odd idiot. 

:)

Dave

User
Posted 15 February 2016 18:57:17(UTC)

Originally Posted by: Online Community Member

I was diagnosed with prostate cancer in February 2014, at the age of 48.  48 is not "young" these days.

We need to raise awareness in men including men under the age of 50  I would say currently we should be looking at men from age 30 years of age onwards, earlier if there is a history of PCa in their family, but this is the view of an old man.    - this is not just "an old man's disease" - and we also need to better educate the medical profession that prostate cancer can be a risk for younger men.  I have been struck by stories from other men who have been dissuaded from having a PSA test by their GP, only to be found to have prostate cancer at a later date.  The earlier prostate cancer is caught the better the prognosis for the patient.   (My italics), not just PCa, the earliest any cancer is caught the better the outcome for the patient, surely?  

One such example is the courageous Kurt Jewson, who's Facebook post recently went viral.  In his original post, Kurt tells how he went to his GP with blood in his urine and was told that it was probably just an infection and would clear up.  The GP did not carry out a PSA test, most likely because Kurt was just 44 at the time, but a year later he was diagnosed.  Kurt had to undergo surgery, radiotherapy and chemotherapy - how different might that have been if his GP had carried our a PSA test and Kurt had been diagnosed 12 months earlier?

My urologist told me that if I had not been diagnosed when I was, I would have been back within 5 years in pain and too late.  I will turn 51 in a couple of weeks and thankfully, there's an excellent chance that I'm free of prostate cancer as well as my prostate.  

I'm now determined to make a difference through raising awareness of the risks to younger men and supporting those diagnosed below the age of 50.  I believe that the impact on these men (often with young families and in some cases still planning one) is significant.  Being younger doesn't make them a different species, but it does mean that they're likely to have different priorities and heightened concerns about issues such as erectile dysfunction and incontinence - Seriously?  You are implying that once you are over 50 these issues are no longer relevant or less relevant or or of a lesser importance than if a man is over 50?  Is this suggestion patronising or insulting?  Or borne of ignorance?    

 I looked for a support group and could not find one that I could relate to as most of the men were a generation older than me.  What is a "generation"?  Generally the "generation" above, as in "of our parents era", so, what 20 to 30 years older than you, so they are 68 + at your age of diagnosis?    

Each of us has our own journey with this disease and it can be a rocky road.  I'm in a good place now and I hope that my experiences can benefit someone as they progress through their own journey.  That's why I think we need a group targeted at younger men.

Steve,

I read your post shorty after it appeared.  Decided not to get involved in the bickering that ensued.  You didn't ask any questions, you made a statement, no response was required.  But, nonetheless you were welcomed.  Members joined in, and others, it's a public forum, people can say what they like, as did the weekend troll, who I guess has found a new bridge?   Reading your reaction to those genuine members here who have offered support and contributed you thread, how patronised you feel etc to people, how indignant you are at their response, when there was no rational reason to feel patronised amused me.  You make a broad statement based on your assumption, others make theirs and you feel patronised.  Go figure?  And people apologised to you.  

People might benefit from reading your post again, in light of your subsequent comments?  My specific responses to your opening post are above in bold.  One is in italics as you had already used bold script.  I hope that you can make sense of it, if you need help, just ask me?  (Now THAT could be patronising :-))  

No one has told you how your post and your views could be, are maybe, insulting and patronising to so many others, me for one at the ripe old age of 57.  You seem to think you can generalise, and insult older men and write off the over 50's at a stroke, and us old folks should all say "yeah fair enough, we/I will just sit here peeing myself and not having erections ever again or rarely but that is fine because I am over 50/55/60?  What is your cut off point?  You do not have a clue.  

If you wish to be some sort of ambassador, and I wish you well, for the cause you would do well to take guidance on what and how you post in future?

Finally, you appear to be advocating PSa tests for men in their 40s?  Why tread water?  Men in their 40s are already being diagnosed with PCa, some advanced, and incurable.  You may wish to keep  up with the issue?  Or, you could try to stay ahead of the issue?  THAT is my preferred position.  I would advocate testing men from age 30, that is the next PCa time bomb in my view.  

And finally, lastly, youngsters get advice and learn from the experience of older folks.  Don't knock it, mock it or take it for granted.  One day it may save a life?

atb

dave 

 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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Posted 15 February 2016 19:18:02(UTC)

Originally Posted by: Online Community Member

.
There ARE small cliques within the forum , and some people meet regularly outside of it. And I'm not sure others get an invite.
 
All the best
Chris

Chris,

I can think of nobody else this is directed at than me, yes i meet up for a drink probably two or three times a year with people within a twenty mile radius of each other.

I do not see how this makes us a clique, but if that is how you and perhaps other member feel then as the saying goes " Im out of here"

To me it is just friendship

 

Don't deny the diagnosis; try to defy the verdict
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Posted 15 February 2016 19:39:47(UTC)

Our nasty little troll set out to divide us all and is succeeding.

He/she (mariar) didn't want to be part of this group, for whatever perceived reason, and did his/her best to try and spoil this lovely supportive site for the rest of us by seeding discontent.

Please don't give the poor unhappy Troll the satisfaction of knowing he/she achieved what they set out to do.

There are people who meet because they have formed a bond and they presumably live close enough to make the journey viable.

There are also the other meetings that we are all welcome to attend if we can get there.

Come on people, kiss and make up. Don't turn this conversation into something that is of no value to anyone.

It was, after all, started by Steve PW to say how important knowledge for the under 50s was, not to start a war.

We can't control the winds - but we can adjust our sails
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Posted 15 February 2016 20:38:44(UTC)

Sandra,

Trolls never win.

Chris is right, there are "cliques", as in groups of friends. As in life. As in down the pub.

To be absolutely clear, my issue is with the original post and author, and their patronising and ageist tone.

Mind you, the last time I pointed out some home truths to a member here, in the manner of a "Emperors new clothes stylie, I was barred. ;-)

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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Posted 15 February 2016 22:25:23(UTC)

Dave Countryboy99,

I can only apologise that my post caused you such distress that you have a personal issue with me.  I did not intend to suggest that anyone's help or advice is less valuable because of their age - that is not my belief at all.

My focus on men below the age of 50 is primarily because of their lack of awareness and the reluctance of some GPs to consider the possibility of prostate cancer in men below this age.

I did not claim that ED and incontinence were exclusively issues for the younger man and I certainly do not dismiss their impact on men over a certain age.  I have had (and continue to have) my own issues in this area and have had great support and advice from men young and old.

Regards,

Steve

 

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Posted 15 February 2016 22:34:13(UTC)

Steve,

I was one who signed the petition to J Hunt but has (predictably) been rejected though a new one is being made . I have argued the case for National Screening for PCa at the age of 50 or earlier where there is greater risk on a number of occasions since I joined this forum in 2008. The best chance of men being cured is by early diagnosis. Hope this link works:-

https://www.change.org/p/the-rt-hon-jeremy-hunt-mp-national-prostate-cancer-screening-for-the-uk/u/15355206?tk=_JnSTPM3uFO0eG_w-rDoV6Dl9gtf2QWUUKudL9fySFk&utm_source=petition_update&utm_medium=email

There is a well attended annual meeting of the people on this forum at Leicester each June where members meet in a very relaxed atmosphere and exchange views and banter. For the last 2 years a guest oncologist has answered questions during lunch. The year before that a well known dietary advocate detailed how she is sure diet helps fight cancer. Don't know whether there will be a guest speaker this year but even if not the meeting is very friendly and worth attending. This year it is on 18th June at Mill on the Soar and is arranged by our member George Hardy through his connection with Bollocks 2 PCa. George also makes reservations for those who wish to stay at the Mill overnight. If you want to meet the friendly people on this forum keep a look out for posts from George Hardy about this meet.

Barry
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Posted 15 February 2016 22:51:30(UTC)

Dear Barry Man with PC,

Thank you for the link to the change.org campaign.  I am reading the information about the test developed by Cambridge Oncometrix with great interest!

Thank you also for the information about the annual meeting in Leicester.  I will put the date in my diary and look out for posts from George.  I just hope there isn't a lynch mob waiting for me if I attend! ;)

Cheers,

Steve

User
Posted 15 February 2016 23:01:34(UTC)

Originally Posted by: Online Community Member

Dave Countryboy99,

I can only apologise that my post caused you such distress   It did not. that you have a personal issue with me.   I do not.  I did not intend to suggest that anyone's help or advice is less valuable because of their age - that is not my belief at all.  Then think before you press the "send" button. 

My focus on men below the age of 50 is primarily because of their lack of awareness and the reluctance of some GPs to consider the possibility of prostate cancer in men below this age.

I did not claim that ED and incontinence were exclusively issues for the younger man and I certainly do not dismiss their impact on men over a certain age.  I suggest that you re-read your initial post again, and subsequent posts ,carefully.  Also re-read my post again,carefully, maybe get some help?  THAT is MEANT to be patronising.  You may gather I am not a fluffy bunny huggy poster?  In tell it as it is.   I have had (and continue to have) my own issues in this area and have had great support and advice from men young and old.  You may well get help in that regard from men from the next generation, we have been there dealt with it, some successfully more others, some, sadly less so.  

Regards,

Steve

No apology needed by me.  And, to be clear, you did not distress me.  A would be politicians response perhaps?  Avoiding the issue and evading the point?  The point being that your initial post and position was/is patronising and ageist.  And subsequent posts, by you,  insulted others who offer help and support.  But you choose to ignore that.  No matter.           

So, to deal with the thought that you caused me distress?  No, you did not.     

Clearly you miss the point, maybe through choice, which I thought I made quite clear?  Evidently, perhaps, not clear enough for you to understand.  

Moving forward, think about what you want to say, and what you type, more importantly think about what you tap the send button on.  If you are serious about promoting a message about early testing and catching men sooner, all noble intentions, it might help you if you do not alienate groups of men in what you spout?   

FWIW unless I can help you constructively from now on with your condition, I will abstain from posting on this thread, or any others initiated by you. 

Despite your hamhandedness I wish you well in your recovery and with your endeavours.

dave

 

 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 15 February 2016 23:12:17(UTC)

I obviously misunderstood this then

Originally Posted by: Online Community Member

my issue is with the original post and author

User
Posted 16 February 2016 08:51:41(UTC)
Couple of points here none too patronising I hope.

First of all the Leicester gathering is primarily organised for and by the founder of the B2PCa website and on line community. It has been running for many years but it has a limited capacity of attendees. It is opened up on a first come first served basis by the founder of B2PCa and to its members first. If there is still some capacity left an invitation to PCUK OLC is posted here by George sometime around March. The remaining places are once again assigned on a first come first served basis.
No clique, it is primarily a get together of people with a common connection PCA. The Saturday afternoon part is the serious bit with a guest speaker etc.
The rest is a social gathering with a lot of laughter and informal chatter amongst friends.


Secondly Steve you may not have seen the conversation on the creation of the 4 new groups. If you can find it you may like to read it as that clearly explained concerns of old and young alike on how they might work.

I think you do misunderstand some of our comments as someone else has pointed out (and got multiple thanks for doing so) you do seem to react to anyone who has a different view or approach to you.


Kurt's story was well portrayed and with all the facts as presented in the PCUK article, however when it went to Facebook lots of facts got dropped with each share until it started to come over as something that Kurt possibly would not have wanted at all.

Now this last bit may sound patronising, take it as you will, but to me you are starting to sound like a badly briefed politician holding a press conference. If you want to help PCUK with a specific matter why not go to them and volunteer your services, your passion to achieve change will be much appreciated.

If you want support on anything to do with your own PCa then this community will still be an optional place to turn to.

I wish you well in your endeavours

Mo
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Posted 16 February 2016 10:14:29(UTC)
Steve,
My OH and I are ambassadors for a new Initiative (local charity that fundraisers for equipment for prostate cancer treatment/diagnosis). They have a limited amount of funding from the lottery specifically to raise awareness - what a hard job that is, believe me. We cannot believe what a low profile prostate cancer has, mainly due to men not being interested/aware of the prostate as you say, most we meet have no idea where it is, let alone what it does. We have our local MP on board to pose a question to 'The House' during March which is PROSTATE AWARENESS MONTH - not seen it publicised much have any of you? and we are organising a lunchtime event for all MP's to attend in the hope our request for advancing the new Swedish Blood test being used in the UK. Last November (ironic coincidence in the Movember....) the body that looks into the efficacy of testing and screening for men 50+ Returned the decision that it was not viable. The reason? That current testing was too inaccurate, but no recommendation made to significantly improve the current tests, despite some good trials (not the same as Sweden) having taken place. If we had the same test as Sweden, who will use it nationally from March, 30% less biopsies would be performed and having just paid the bill for private MRI and Trans Fusion biopsies... that's a saving of £42million a year in the UK.
In getting men to attend these events, beer and curry nights with 70 or so men, all actively asking questions, taking part etc. 1 went for a PSA test, despite the majority being 50+.
Would appreciate some suggestion from the community as to what would get their attention? We are now thinking of targeting the female population, maybe they can 'encourage' their men folk into going!!!!
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Posted 16 February 2016 11:11:54(UTC)

Hi Susan,

There are lots of local support groups, I have worked with mine since diagnosis and offer the following thoughts:

We were offerred pitches at local events such as agricultural shows and air shows, we set up our stall and waited for the rush but it didn't happen.  Most of the public seemed to give us a wide berth.  I reckon it is due to the fact that chaps enjoying a day out with their wives and families don't want to spoil the day talking about cancer.  Mostly we got widows who had lost their husbands coming up to us to donate.

Our conclusion was that we would not waste our time attending public events that did not have a health or cancer theme, it isn't really fair to intrude upon peoples leisure time with an unwelcome message. 

We did however have much more sucess at the local Breast cancer 'Run for Life'.  I guess the difference was that everyone attending that event had been touched by cancer, and while the run was on there were lots of 'seconds' standing around waiting for their partners to complete the run.  We got through thousands of leaflets that day.  As you say raising awarness among women is useful as they almost all have husbands or sons

There are a whole range of organisations such as Round table, Probus Club, Ladies Circle, Women's Institute etc who struggle to get enough speakers at their lunches, if you are at ease with public speaking that is a good way.

Of course whether it is actually a good idea to encourage men without symptoms to have PSA tests is another subject.

:)

Dave  

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Posted 16 February 2016 13:22:17(UTC)

Susan99 & davekirkham,

Thank you so much for your constructive replies!  Susan, I was aware that March is Prostate Cancer Awareness month - but only by virtue of a Facebook post I saw at the weekend; it does not appear to have had a lot of publicity.  Are you able to provide any more details about the new initiative you're involved in (a link, perhaps)?

I was chatting with a very good friend of mine at the weekend.  Her husband is mid fifties and had never had a DRE or PSA test, but she said it took an enormous amount of persuasion from her (she said nagging) to get him to go and discuss prostate screening with his GP.  He had a DRE and PSA test and everything checked out OK, I'm pleased to say.

Dave, you make some great suggestions about outreach to men via wives and partners.  It may be that some of these women will spot symptoms in their loved ones that the men are oblivious to (or have turned a blind eye to).  My nocturia certainly crept up on me and I didn't go to my GP until it was a significant problem.

Best,

Steve

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