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1000 new members in only 6 months.

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User
Posted 16 Apr 2024 at 14:52

I only joined on 16th October, last year. Since joining, there have been a thousand new members. I suppose we're just the tip of the iceberg, and only indicate a fraction of how many people are affected by prostate related illnesses.

Frightening really.

User
Posted 19 Apr 2024 at 09:29

Hi Andy,

Welcome to the forum. I  hope you are recovering from your op. 

I think your summation of forums is a bit harsh, imparticularly regarding this one.

Most people here, post their experiences of prostate cancer. It is a place where people, can see how others in similar conditions have coped. Of course individual experiences varying enormously.

As for advice  most don't offer any medical advice and if they do they usually  they usually stress that they are not medically trained. Others post medical information that they have sourced elsewhere and often post links to it.

Contradictions are common. 

Of course you should heed the advice of clinicians, however, there have been numerous occasions, where people here, have been clearly ill advised by them.

I find it difficult to accept your critcism of others when you haven't posted, other than on your profile, your own experiences of RARP,  which is what many on here  would find so helpful.

The vast majority who contribute to this  forum do their utmost to support others in a similar predicament. Most post in good faith. 

 

Edited by member 19 Apr 2024 at 09:36  | Reason: Additional text

User
Posted 16 Apr 2024 at 18:44

Don't forget 50,000 men a year are diagnosed in the UK. So only 4% are registering on this site. Hopefully the other 96% are getting support by some means.

Dave

User
Posted 16 Apr 2024 at 19:38

That is a lot of new members to a forum nobody really hope to join. It is frightening to say the least.

User
Posted 16 Apr 2024 at 20:57

I wonder if that includes the spambots which get ejected after their first posting?

User
Posted 19 Apr 2024 at 08:38

Thanks Barry. I joined the forum searching for some practical advice having had a RALP a month ago. The danger with forums, including this one, is that there are a number of frequent posters that offer advice (often inaccurate) based on their own experiences. I haven’t posted much because no one wants to contradict people but I would urge that members trust their clinicians more than advice on the forums. Andy 

Edited by member 19 Apr 2024 at 09:14  | Reason: Not specified

User
Posted 19 Apr 2024 at 19:03

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

I wonder if that includes the spambots which get ejected after their first posting?

Hi Andy,

I see that within hours of your post, 17 'members' vanished. 

I wonder if someone in the 'corridors of power'  kicked them out. 🤔

 

I frequently report suspicious first time posters and the moderators are quite quick at removing them. There was another one today, obscure message ,young age and usually abroad. That disappeared before I got round to reporting it. 

Thanks Chris 

Show Most Thanked Posts
User
Posted 16 Apr 2024 at 17:49

Is it frightening? Or is it that the message is getting through? GET TESTED!

I wonder how many of these people were tested early enough to get a curative prognosis🤔🤔🤔

User
Posted 16 Apr 2024 at 18:44

Don't forget 50,000 men a year are diagnosed in the UK. So only 4% are registering on this site. Hopefully the other 96% are getting support by some means.

Dave

User
Posted 16 Apr 2024 at 19:38

That is a lot of new members to a forum nobody really hope to join. It is frightening to say the least.

User
Posted 16 Apr 2024 at 20:57

I wonder if that includes the spambots which get ejected after their first posting?

User
Posted 17 Apr 2024 at 22:14
Surprising that with so many new members that more do not post as it can be assumed that comparatively few have an in depth knowledge of PCa. We are all on a learning curve and Prostate Cancer advances have been considerable in recent years, many of which have been mentioned on this forum so men are better informed and supported.
Barry
User
Posted 19 Apr 2024 at 08:38

Thanks Barry. I joined the forum searching for some practical advice having had a RALP a month ago. The danger with forums, including this one, is that there are a number of frequent posters that offer advice (often inaccurate) based on their own experiences. I haven’t posted much because no one wants to contradict people but I would urge that members trust their clinicians more than advice on the forums. Andy 

Edited by member 19 Apr 2024 at 09:14  | Reason: Not specified

User
Posted 19 Apr 2024 at 09:29

Hi Andy,

Welcome to the forum. I  hope you are recovering from your op. 

I think your summation of forums is a bit harsh, imparticularly regarding this one.

Most people here, post their experiences of prostate cancer. It is a place where people, can see how others in similar conditions have coped. Of course individual experiences varying enormously.

As for advice  most don't offer any medical advice and if they do they usually  they usually stress that they are not medically trained. Others post medical information that they have sourced elsewhere and often post links to it.

Contradictions are common. 

Of course you should heed the advice of clinicians, however, there have been numerous occasions, where people here, have been clearly ill advised by them.

I find it difficult to accept your critcism of others when you haven't posted, other than on your profile, your own experiences of RARP,  which is what many on here  would find so helpful.

The vast majority who contribute to this  forum do their utmost to support others in a similar predicament. Most post in good faith. 

 

Edited by member 19 Apr 2024 at 09:36  | Reason: Additional text

User
Posted 19 Apr 2024 at 09:55

Hi Adrian

thank you for your comments. I didn’t mean to be critical just wanted to introduce caution. During my recovery in the last month I scrolled through a few threads and have been alarmed by some of the comments. I can give you examples if you like. I haven’t personally posted because I have mostly found the info I needed searching through the threads (mostly about things like, what pads to buy and where from). 
Stay well. 

andy

User
Posted 19 Apr 2024 at 12:15

Originally Posted by: Online Community Member

Hi Adrian

thank you for your comments. I didn’t mean to be critical just wanted to introduce caution. During my recovery in the last month I scrolled through a few threads and have been alarmed by some of the comments. I can give you examples if you like. I haven’t personally posted because I have mostly found the info I needed searching through the threads (mostly about things like, what pads to buy and where from). 
Stay well. 

andy

If you think regular posters have given bad advice, I think you owe it to them in particular and the membership in general to spell out and put them right, citing the examples you write of.  Many men have come on this forum looking for guidance and have expressed their gratitude for the information given based on their own experiences and what they have learnt from others here, meetings with professionals and digesting lecture from leading consultants.  From a personal perspective, I have always tried to show what is out there, be impartial and not push for any one treatment over another, making it clear that advice concerng treatment for individuals is taken from consultants, we are not qualified. Furthermore, I have said on several occasions that one should not take the experiences of the relatively few people who post here as being necessarily representative of PCa experience at large.  Even professionals sometimes differ on various aspects of treatment for example but tend to favour there own discipline.  In fact a number don't know all the possibilities out there often because they lack facilities, so suggest patients learn of possibilities and pros and cons.  Almost all PCa journeys are individual and should be considered as such.  When it comes to non treatment aspects that are raised such as for example of when to tell family and friends, that is the sort of thing that people can give advice on based on their experience but even then what is right for one family may not be best for others.

So please, take the opportunity to give examples of bad advice as constructive criticism

Edited by member 19 Apr 2024 at 12:18  | Reason: Not specified

Barry
User
Posted 19 Apr 2024 at 14:43

Hi Andy

I can't say I have come across any 'medical' advice being given by members in this forum. However it is worth pointing out that, if not careful, it is possible to introduce unconscious bias when talking about our experiences. I am very aware, as I am sure others are, of the the risk of unintended bias in the tone of our comments.

 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 19 Apr 2024 at 18:12

Originally Posted by: Online Community Member

I wonder if that includes the spambots which get ejected after their first posting?

Hi Andy,

I see that within hours of your post, 17 'members' vanished. 

I wonder if someone in the 'corridors of power'  kicked them out. 🤔

User
Posted 19 Apr 2024 at 19:03

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

I wonder if that includes the spambots which get ejected after their first posting?

Hi Andy,

I see that within hours of your post, 17 'members' vanished. 

I wonder if someone in the 'corridors of power'  kicked them out. 🤔

 

I frequently report suspicious first time posters and the moderators are quite quick at removing them. There was another one today, obscure message ,young age and usually abroad. That disappeared before I got round to reporting it. 

Thanks Chris 

 
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