New topic areas for specific groups

I wouldn't know enough about  the lifestyles/ethnicity of a prostate cancer sufferer if it is different to mine, to be able to judge, so I hope I would just treat them as another person on the same journey as us.

As it is, whenever I reply and it's relevant I will say that there are a number of wives and partners on here prepared to offer advice.

I don't assume that we are all married or if we are that the partner is the opposite sex.

All you can do is try Sadie. If it works and fills a need then all well and good

Edited by member 07 Jan 2016 at 18:08  | Reason: Not specified

I wonder whether men are told these days about support groups and this Community when they are diagnosed, either by consultant or GP. It would be interesting to know this.

I can understand why a separate section might be thought appropriate for Trans and Gays as these are  distinct minorities with sometimes special needs and not many have raised issues on the forum.  However, those that have have been supported like everybody else which is proper and inclusive.  To ask them to post in a separate area is discriminatory and as proposed they would lose the benefit of the experience of many other members, friends and family.  So this could be counterproductive and I feel not well thought through.  I don't see the need for a separate place for younger men or Afro/Caribbean, though I am aware the latter are more prone to PCa at an earlier age but why fragment unnecessarily?

Why not spent some time sorting out the search facility to enable people to assess relevant threads from the forum rather than having to plow through a load of irrelevant detail that is brought up?   I find it less laborious googling what I want to find to bring me to an appropriate thread on the forum which is a ridiculous way of having to go about it.  The other thing is the introduction of 'stickies' which has been brought up a number of times over the years but nothing has been done about it.  

Edited by member 08 Jan 2016 at 10:53  | Reason: Not specified

The search function is useless on an epic scale. So is the member search !! I even find my saved conversations disappear regularly , as do my conversations that I've posted in. But overall a great forum with lovely members all meaning good.
I still personally don't see the issue with separate areas for minority groups. I even suggested to Sadie adding an area for people with mental health issues who are coping with PCa on top of everything else. We are not all the same and I think that any strategy that encourages otherwise hesitant people to get help with their cancer is good news.
I remember the lady that was a swinger and despite some considerate posts I feel other posts definitely desuaded her from further help. I myself have felt very grateful indeed to have been accepted "onboard" , and to be honest you guys have been lifesavers , but not unexpectedly I received a few posts describing me as irrational and negative. I wouldn't dispute those views to be honest , but it would be a sin if someone was deterred from using this service because their views and / or lifestyle choices didn't meet the norm.
Nobody would be stopping anyone from viewing and replying to posts.
Thanks to the forum and everyone in it
Chris

We were given a paper copy of the PCUK toolkit (in its previous form) at the diagnosis appointment and the back page included this website in the support section. The forum is also listed on a poster in the urology department.

Sorry Saddie but this smacks of segregation to me it is compartmentalising people. Also agre with Barry money and effort would be better directed in literature given when men are first diagnosed directing them to the PCUK forum. 1 in 4 men diagnosed are black but they are not portraid in the pamphlet .

East Enders was a brilliant opportunity to get the message out there but it was chosen to portray an 80 year old Caucasian male . This could have been such a message for a younger male gay or black both would have been brilliant.

Honestly until you can put these minority groups in the literature then they are not going to post it doesn't matter if they are in (special) headings or not they won't even know that PCUK exhists

I have always said this but the advertising and message needs to be out there and sadl,y men of all different sexual orientation colour or creed is not getting through..

Every women in the country understand what a pink ribbon symbolis , do Breast cancer forums have seperate sections for gay women and black. Women? I don't think so.

Is it a kind of safe house that you are thinking , blacks and gays only , I do understand what you are trying to achieve

But I really don't think this is the right way to go about .

BFN

Julie X

Feel I must agree with the money and time would be better spent on promoting the site and PCaUK
Regards
Nidve

We tried to make it really clear in the announcement that we would never ask anyone to segregate themselves and their conversations away from others unless they preferred to do so for their own reasons. We would never want to segregate anyone.

We know that, among members who post here already, people are very unlikely to feel the need for these separate areas themselves – by definition, people who are here already are happy enough with the existing topic areas to keep posting. But there are a lot of people who aren’t here to post on this thread – say, transgender women sitting at home googling for anything at all relevant to trans women with prostate cancer – who might not find anything at all if we didn't try providing a space. And there might be others who do have access to mixed resources where a majority of people don’t share an experience which is important to them, but may have had bad experiences and don’t feel comfortable sharing in that environment.

Some in this thread have said they want us instead to promote the community and our other services to more men at the point of diagnosis. We do that – we have a whole team that works on outreach to health professionals and trying to get more people to share our services and resources with their patients. Adding these groups isn't taking away from that – it’s not cost us anything to create them and we’re going to try promoting them with word of mouth and free or extremely low cost search advertising.

Thanks so much to all for engaging with this discussion and sharing your views – it’s clear that everyone cares a lot about this community. Again this is just a trial to reach people who aren't currently being reached and it shouldn't change anything for community members who already post here.

Best,
Sadie

TOPIC AREAS

Let me start by saying thank you, PCUK helpline and Forum has been an enormous help for me in terms of information and support and I am truly grateful. I hope my post here is seen as constructive and not critical.

I had my op (RARP) on 26th January 2017 and I am now going through many of the issues commonly experienced by others. In that regard I am pursuing those issues in the on-line forum.

I have a suggestion for that forum . . . .

Users (me) want to find answers to questions. The forum has 'Topic' areas. The flow chart starting with a PSA test will branch out in many direction as different men have different diagnosis and choose different options with different results. That said there are some common issues and I would argue that incontinence is the commonest common issue. In that regard I suspect that the issues around incontinence are different for those choosing different treatment options and similar for those opting for the same treatment option?

I suggest that incontinence is worthy of a topic area of its own and it would be helpful if that topic area was divided into, Incontinence after RARP, Incontinence after Open Surgery, Incontinence after Radiotherapy etc. OR, perhaps an RARP Topic area and other treatment option have a Topic area of their own with sub topics relative to those treatment options e.g. RARP + sub topic Incontinence after RARP.

Why? I had RARP; I believe it would help me if I understood the detail of what was cut out, cut through, taken away and what I was left with; I believe it would help me if I understood the mechanics/physiology of what was, what is and what I should try and achieve; in that regard I don't believe it will help ME (a post op RARP) reading the experiences of others who had different treatments.

Thanks

Me too.
I have no wish to offend anyone or assume that I know (as a mere woman) what men going through PC, treatments and after effects, feel like
I answer if I think a new person wants a bit of a boost and sometimes I worry that a newbie will feel rejected if there is a delay in replying.

I've found the general approach to who reads/answers posts works really well for me ... when I've wanted a specific answer I've just asked a specific question and have always had lots of replies (some more to the point than others, but all encouraging and friendly which is one of the things I like about this forum.

BUT the fact that very few of us use the tags option means that it's very hard to hunt for / find previous threads on a topic (which is what I tried to do when I first joined). There must be lots of useful stuff out there that hardly anyone can recall. Maybe if there was a drop-down menu of key tag topics that we could use when appropriate it would help?