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Why we need this group

User
Posted 14 Feb 2016 at 09:41

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.

 

Edited by member 14 Feb 2016 at 09:42  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 14 Feb 2016 at 09:47

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

User
Posted 14 Feb 2016 at 10:49

Whinging, moaning and being outright rude always welcomed on The Dark Side http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

 

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 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

 

Nil desperandum

Allister

User
Posted 14 Feb 2016 at 11:08

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.

User
Posted 14 Feb 2016 at 16:27

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

 

User
Posted 14 Feb 2016 at 18:26

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

User
Posted 14 Feb 2016 at 19:54

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.

 

Edited by member 14 Feb 2016 at 21:38  | Reason: Not specified

Barry
User
Posted 14 Feb 2016 at 21:09

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
User
Posted 14 Feb 2016 at 21:53
⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑⛑

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
User
Posted 15 Feb 2016 at 14:29

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.

User
Posted 15 Feb 2016 at 14:53

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

User
Posted 15 Feb 2016 at 15:02

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.

User
Posted 15 Feb 2016 at 15:25

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

User
Posted 15 Feb 2016 at 15:39

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.  

User
Posted 15 Feb 2016 at 15:45

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).

User
Posted 15 Feb 2016 at 15:48

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

User
Posted 15 Feb 2016 at 16:12

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 Feb 2016 at 18:57

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 

 

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 15 Feb 2016 at 19:18

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
User
Posted 15 Feb 2016 at 19:39

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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