Why we need this group

User

Posted 15 Feb 2016 at 20:38

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

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 15 Feb 2016 at 22:25

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

User

Posted 15 Feb 2016 at 22:34

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.

Edited by member 15 Feb 2016 at 22:35 | Reason: Not specified

Barry

User

Posted 15 Feb 2016 at 22:51

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 Feb 2016 at 23:01

Originally Posted by: Online Community Member

Dave Countryboy99,

I can only apologise that my post caused you such distress http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif It did not. that you have a personal issue with me. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif 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. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

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

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 15 Feb 2016 at 23:12

I obviously misunderstood this then

Originally Posted by: Online Community Member

my issue is with the original post and author

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

User

Posted 16 Feb 2016 at 08:51

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

User

Posted 16 Feb 2016 at 10:14

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!!!!

User

Posted 16 Feb 2016 at 11:11

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

Edited by member 16 Feb 2016 at 12:57 | Reason: Not specified

User

Posted 16 Feb 2016 at 13:22

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

User

Posted 16 Feb 2016 at 14:19

I have only been away a few days and get back to chaos and unpleasantness! It seems to me that pickled walnut has joined the wrong forum if what he was hoping for was a little group where he can control what is said. I am sure that PCUK still do training for ambassadors and fundraisers - loads of us do a lot of work but we don't bang on about it, we just do it. And all this stuff about PSA tests for 40 year olds at increased risk - do your homework PW ... in fact, your knowledge and understanding is a bit behind the times which makes me wonder if you are also playing games?

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

User

Posted 16 Feb 2016 at 15:06

Setting aside for a moment early PSA testing which divides not only patients but doctors, there is wider agreement on making men more aware of PCa. This Charity has done that in the past with TV adverts and and if I remember correctly competed with others for funding and advertising on buses. It is good to see many of the TV football presenters and some of the football managers wearing their PC badges. But as has been said on a previous occasion, the best way to engage men is to educate them about health and risks at an early age, preferably before they leave school. It is true that women are far more proactive when it comes to health and seeking out answers. There are many forums for Breast Cancer for example than for Prostate Cancer. Maybe advertising in magazines read by women might lead to them making their men more aware. I would have expected PCUK to have looked into this and other possibilities.

Barry

User

Posted 16 Feb 2016 at 15:33

Agree wholeheartedly but I think we have come on in leaps and bounds recently. I often see PC awareness info on the toilet doors in the Ladies' at motorway services

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

User

Posted 16 Feb 2016 at 16:53

Wondered where you had been Lyn so hanging around the loos in service stations😂. I thought you normally travelled by train.😉

If we are talking about getting the message across to younger men then I whole heartedly agree I am still standing on the fence about PSA testing nationally . I have said several times on here that getting the message out there to women is to my mind the way forward. A few years ago there was a weeks worth of information on the Good morning programme (including a live DRE) but we need more of these adverts because people have short memories.

I saw the fb thread and my first reaction was good on him for telling his story (more awareness can only be a good thing right) and then I got to thinking actually a man stood in his underpants revealing his stoma, would that encourage men to get tested or have the opposite affect and send a lot of men running for the hills.?

Eastenders missed a huge opportunity when they portraid the PCA story line choosing the stereotypical older man (saying that Danny Dyer is probably wiping huge beads of sweat of his brow)😍

Getting the message out there to younger men for me is only a small part of the problem , getting them to act and seek help because of symptoms know that's a whole different ball game. (pardon the pun)

The mere mention of ED and incontinence would make an awful lot of men to choose the head in the sand option.

Trevor has 5 sons who are all know at increased risk of getting PCa there age ranging from 42 to 11, the eldest at 42 has decided not to have early testing even though 3 of Trevor's brothers have also had this disease.

Before Trevor was diagnosed I had vaguely heard of PCa and like so many thought it was an old mans disease (how wrong was I) I would most certainly have nagged him to get tested.

We are far from getting the message across but as Lyn says things are improving , to slowly for Trevor .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 16 Feb 2016 at 17:10

Rome Julie, I bought John tickets for the rugby as a treat. Cost me an arm and a leg so bl***y good job we won!

PW's comments about the importance of testing reminded me of Candyman - such a lovely guy; diagnosed at 43, died age 48. I have attached his profile for new younger members - Enzo did not give him the respite he was so hoping for which links in with another thread last week about Enzo after Abbytabby and vice versa. I think one of the cancer charities needs to do some research on whether the younger you are at diagnosis, the less successful the 'curative' treatments will be. Joe, Ben, Mark ....

http://community.prostatecanceruk.org/default.aspx?g=profile&u=2539

Edited by member 16 Feb 2016 at 18:13 | Reason: Not specified

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

User

Posted 16 Feb 2016 at 18:04

ROME, you lucky people hope you relaxed and had a wonderful time. Rugby goes right over my head so I didn't even know it was on (sorry rugby fans)

I remember Candyman lovely guy and yes I have wondered if the younger at dx is it more likely to be a tiger than a pussy cat as you say only more research would give the answer.

Something has just occurred to me (thank you Lyn) mentioning such lovely men, Candyman, Mark, Joe, Ben, all younger than the average at DX but all chose to join and contribute to the forum and thank goodness they did because reading there posts has for me been a privlilege. Truly humbling , (tearing up know) . They have left there mark in written word for hopefully future generations this is what the forum is all about not the bickering.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 16 Feb 2016 at 18:50

On the subject of younger men being affected, those under 40, with so many cancer illnesses now about one thing that could be bought to their attention is sperm freezing? This may also affect older men, men who have not started a family or who wish to add to an existing family, or want to insure that if their current relationship heads due south, they have the potential and possibility for children with a new partner in due course.

I think I read some years in the media, more than a suggestion, a clinical case being put, for all men to consider sperm freezing, just in case? Can not recall the age. Is it realistic or scaremongering to consider the possibility that with the increased rate of PCa affecting younger and younger men, the natural lineage of many families may be threatened if sperm is not preserved? Should men from 30 plus consider freezing sperm? I think it would be a good idea.

This is not exclusively a "younger man" issue, although it may affect younger men proportionately more than older men purely in numbers affected? Or it may not.

StevePW - you may wish to add the topic of "sperm freezing" to your list?

Oh, and has anyone told you about willie shortening? Apparently men lose up to an inch after a operation, some more some less. I was only told about that on this forum after I had had my op. Now why did no one tell me this? But, it would not have changed my treatment choice. However, there are some men who do not start out with much who this may affect quite badly, and that may influence their choice? A friend of mine told me of a man she knew that was about 4 inches erect. To lose 25% might be more than he would think acceptable?

As for younger men, if we are talking generational segregation, I would be okay I think, at age 58, to contribute to the anywhere from 45 years to 73 years old age band?

Started this post at 0845 this morning, got distracted during the day, so finishing it now at 1841 UK time.

Good luck with your objective. I do hope that as you continue your campaign you can get more people involved, and exclude fewer?

atb

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 16 Feb 2016 at 19:10

Originally Posted by: Online Community Member

Agree wholeheartedly but I think we have come on in leaps and bounds recently. I often see PC awareness info on the toilet doors in the Ladies' at motorway services

That is equality gone mad! Should I be demanding my annual smear test now?

Joking aside, if a person wants to bang a drum for testing and raising awareness of PCa, should anyone tell them to stop because it is the wrong drum? Why not deflect them to the more appropriate drum? Now the conciliatory diplomat in me says do not post this next bit. So, like we do when bringing up children, don't discourage them by telling them to stop being irritating, just suggest an alternative activity that is less irritating and more constructive.

The CD got beaten up by the minx. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

atb

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 16 Feb 2016 at 19:17

Why is it anything to do with equality????? You have misunderstood I think - the poster says something like "does your husband, brother or dad have to get up frequently during the night? Does he have problems emptying his bladder" etc etc etc - I think it is a brilliant way to get under women's skin so that they get on to their menfolk.

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

User

Posted 16 Feb 2016 at 19:26

Originally Posted by: Online Community Member

Oh the Eye Ronny. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

dave

Do all you can to help yourself, then make the best of your time. :-)

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