I too feel that there is a need for both the very public forum here, which can be found easily by absolutely anyone and a place like bcpals (or a fb closed group) for more private conversations. For that reason I have used both and CM's point shows the need for both types. Had this Forum not been so easily accessible I wouldn't have found it in the very early days before confirmed dx but when I really needed the information and support.
I do have some concerns about the new site here and although it is true that BCC stress the privacy issue as Mike says, at the same time it looked as if there was going to be a sort of encouragement to share more profile info - which can lead us to share more identifying information than we might otherwise.
There is another point that applies to the more closed sites as much as it does here, and that is that someone determined to get in, will do so. This might be for curiosity, stalking/general unpleasantness, or advertising purposes.
When I first started using email/messaging (many, many years ago!) we were taught that we should never put in an email anything that we wouldn't be happy to put on a postcard. Perhaps today we should think of an open Forum as being like the village noticeboard ...
I think the main problem is that anyone can become a member here by claiming to be a friend/relative of someone with bc[and lets face it most people do know someone with bc].Once they have joined then all posts/information are open to them.The beauty of the site I mentioned is that it is exclusively for women with or genetically at risk of bc.No amount of 'googling' will reveal the posts from that site which is,sadly, not the case with BCC.
I feel there is a place for both types of site.For the newly dx BCC is invaluable-both the website and the helpline.The information available is unparalleled but if you need a different type of website-one where you can reveal all your innermost fears and feelings and feel totally secure-then a site like[is there another/]bcpals can be a unique and special place.
I use both and they have different functions for me.
Mike, in the past I was having a bit of a problem with a member of my family's response to all the cancer rubbish and I would have really welcomed being able to ask for advice, but because it was about someone else's problems and not about mine, I didn't feel it was my place to mention any details (without which I couldn't actually ask the question).
It is this kind of particularly sensitive matter - often family-related - that we would still like to be able to discuss with our online friends but which we don't feel able to mention on open forum. I know there are people who could identify me fairly easily from various posts, style of writing, diagnosis, location etc, and therefore would be able to find out things about those around me if I asked questions about how to deal with them on open forum. Most of the other posts would still be in the open forum, but some sensitive subjects... well you get the idea.
Thanks for your messages on this thread regarding privacy on the forums. The Breast Cancer Care online community is a public forum where messages can be seen by anyone browsing the World Wide Web. This means that messages can be seen by people searching websites like Google, ensuring our site continues to attract new users searching for specific topics. Our stats show that a significant number of people read the forums without actually posting messages. The fact these forums are public allows people to gain support and information in this way without necessarily registering to the website. Although there are other online forums that have private areas for conversation, our private messaging service allows forum members to contact each other in a similar way.
When you register in the online community, we encourage members to choose what information they disclose with care. Our detailed Terms and Conditions, and Community Guidelines, explain that the forums are open for the public to read and so, details that may identify someone are not allowed. We take the matter of privacy very seriously and while we encourage members to share personal experiences, we do not want this information to jeopardise anonymity.
At the moment, non-members can't see forum users’ profile details or post messages on the forum but are able to read the posts offered by forum members and our BCC clinical team. While presently non-registered users cannot view someone’s profile picture, this will soon change and when the new website is launched, profile pictures will be seen by everyone. But don’t worry, we won’t be making all your current profile pictures visible without your permission.
We have a page on the forums which describes all the details about privacy and using the forums http://www.breastcancercare.org.uk/forum/using-the--forums-at-breast-cancer-care-p290017.html#p29001...
We're always looking to use feedback to improve our services and your suggestions on this thread will be taken into account going forward.
As you will see the links to Facebook have this morning been deleted. These forums offer a support service where members can post anonymously and while we appreciate conversations may continue on other sites, including Facebook, we cannot allow sites which identify our members. As the names of the members of this Facebook group are clearly visible, it goes against our duty of care to protect the identities of our members and therefore, we cannot allow the link on this thread.
(Facebook link deleted by moderator)
More networking and 'doing'/face to face than chatting online, but page is totally private. Do ask for an add if you are in/near Somerset.
To be honest .. I don't really care who reads my posts or knows my feelings .. I'm sharing my journey with lots of people because I think it helps to get cancer out there ... so I have no worry posting my photo .
I feel a bit silly now-I have read through the whole thread and seen bcpals mentioned several times.That is of course the secure site to which I was referring.There was a time when BCC wouldnt let other sites be mentioned.I am glad that is no longer the case.
Hi Pauline (hollymeg)
I just had a look at the link you have posted and found it slightly disturbing that you can see all the members, their photos, and when you click on a photo - you can then see the list of all their friends etc. That doesn't come across as particularly "totally private" as you say. Is there no way can prevent that sort of information being seen? I obviously don't know a lot about facebook :). It might have been better if you had not posted the link but asked people to pm you?
Which reminds me, I went to a christening recently and an Auntie I haven't seen in ages said "How are you" and I said "Fine thanks" and then she leaned in and said "how are you REALLY though" and I said "Sh*t actually, I feel terrible" and laughed.
Just goes to show, how many people just automatically say "fine" ?
As to the question why would anyone want to read what you've put who iknows you ..... well, to find out what you're REALLY thinking, not what front you put on, probably.
And it's human nature to be nosey and inquisitive.
If anyone is concerned about privacy, pick a name that can't be associated with you and a photo that doesn't show you.
I think if someone was looking who knew me then they could figure out it's me though, due to writing style, discussions about personal stuff etc.
And if we were to have a members only would you have to prove you have cancer? Anyone can sign up to a community. It's like blocking people on Facebook, if you set up a fake persona and log in using different email address you can see them as they don't know its you to block.
Hi there ladies, i totally agree with what you are saying. sometimes you just want to chat and not worry that your chat can be googled and seen by anyone. After relying on this wonderful site for 2 years, myself and some other ladies off this site have now set up a totally private group on facebook just for BC ladies. It is totally private. I am an administrator and another well known BC friend. please feel free to join us, all we ask is you just give a few details of your BC. It is all kept confidential and has proved invaluable when others who havn't got bc tried to gain entry to the group. (Facebook link deleted by moderator)
Just search breast cancer chatter.
Please feel free to join us ...you are most welcome....Pauline
There is a secure website especially for women with bc and no one else.Posts can not be googled by anyone.I dont think I am allowed to post the name here but do pm me if you want to know-it is certainly worth a look.
thanks ladies, i've just been in & edited a few posts just to take out a couple of bits of info that i wasn't happy with. Just stuff that was a bit personal to me & someone could recognise if they knew me well. Feel better now but i think i will be a lot more careful when i post now to make sure i don't give any personal info away. I know the moderators always tell us but it's so easy to forget, x
Hjv123 you can't delete posts but you can edit them so could go back in and leave them blank. I know a few members have done that but it does take a long time if you have posted often.
hjv123, this link should show you a list of all your posts here
If you click, and log out, you will then see what others can see. The same wording, bit no profile or picture.
i'm getting a bit worried now. I'm not concerned about family members as luckily they're very supportive but i'm just wondering what i may have posted in the past without realising. When u post it's almost like your talking in private to that person. I must be naive too as i wouldn't even dream that people would use this kind of site to 'spy', that's just not on is it. Is there any way i can check my past posts to make sure im happy with them?
I regret using my favourite cricket team in my user name but in the midst of chemo fog I thought that the only people reading my posts would be people who didn't know me. It wouldn't be a shock though to find out my sister (who I rarely see and hasn't been any help) is following my every post - waves at Kate. So I was v happy when bacca started a closed separate site but it fell into disuse and those that had used it gravitated back to this site. I think it's a case of be careful what you say, or say it in private.y
i can see that some people would realy like a private area where they can completely relax and let rip. I think the current sections are a good idea. I sometimes feel a fraud being on this site because although i do have cancer and it has saved my sanity how can I possibly comment on problems people having chemo or discovering secondries have. I feel like a bit of an intruder there and so i try to remember to see which section the post is on and be careful about commenting.( idont browse the sections, just look at all new comments)
when i first found the site my band and people who where not close to me did not know i might have cancer and so i did not use my real name or picture. But as I have got used to it I have relaxed and even put videos up.
I have mentioned my husband at times, but i know that he would never browse the net. And if a son or daugher came on, they would not lean anything new, i moan to them too.
My only concern with a members only area is that first I get so much pleasure from some of the amusing threads that a lot of the real troupers comment on and I think those threads would end up in the members only site . I think it is good for new members to be able to see the funny side of all this.
Also people might feel totally secure on there and then get a shock, I mean how is it going to be policed. if someone is sick enough to want stalk then they coulld pretend they had cancer, even find out what a hospital number looks like or whatever its is that the site would ask you to enter when signing up.
I know there was one poster that I thought--are you for real or on here for a laugh, but there seemed no point asking the moderators--how could they tell, and anyway if it was a real BC patient how upsetting it would be for them to be asked for their credentials.
I dont know how this can be solved
It never crossed my mind that people/friends/family would look on here to find out what I was saying or feeling .. surely they would ask me? I've found this site invaluable for advice, help and support and can't imagine anyone not using this site for what its intended. Am I naive?
I totally agree before bc num one why wld you even come on a bc forum and google info about plp family friends you wldnt even dream of it and tbh even if a family member friend had bc I don't know if I wld join to get info I wld prob be guided by the person that had bc but that is only me and we are all diff
As there was a new website in the offing ( don't know what happened in the end ?????) it would be interesting to know if it was considered. Personally I have used threads a lot and been fine with it being public, however recently I have really wanted some more privacy on the subject of genetics. I have been fortunate to be able to pm some helpful ladies, but I am sure there are more who may be able to help, but I don't want to give too much information publicly. So a private genetics area would have been great for me and also imagine some issues involving sexuality and also relationships and family would encourage people to post more freely.
I do know that a lot more people read than post and the wealth of knowledge is so useful to many people, but in certain important areas people may not be getting the full benefits of the site because they are concerned about the public nature of the forum. So I suppose I am saying keep it generally public, but have a private section, where members can see there has been a new post, but non members can not.
Seriously, why would anyone 'slalk' a friend or family on here? If l wanted to help a friend or family then l would ask them how l could help, a friend of mine went through bc before me, l was with her ever step of the way, but never thought to look on the internet, I asked her how l could help and went to every appointment. If l was worried l suppose l could have contacted the helpline, not sure l would/could read other ladies details of what they are going through with this nightmare.
Obviously there are friends and family that want to help and come on and ask questions, and that is absolutely fine, but for those that are reading just to find details about their friends or family! l hope somewhere in their brain something will tell them this is not the thing to do! We have had people on here before that have pretended they have bc, l find this just as sickening!
I too am on a closed group in fb, and feel more secure when l have a worry about an ache or pain, just talking it through with my fb friends often sorts my head out! l am still at the stage when l am just coming out the otherside, so still need support, and while bc forum has helped me so much,l find l need a break from it. When l come through the 'otherside' l will be back giving support to those that need it.
It's a tricky one isn't it? And to be totally fair to BCC in all the blurb we are reminded that posts are publicly visible and that arch-demon Google will locate them.
I 'lurked' on the forums for quite a while before joining because I just wanted to check things out. It was only when I'd completed my treatment that I joined, initially to say a 'thank you' to other posters. Since then I've become a prolific commenter on diverse threads, mostly not the 'friendship group' ones, mostly if someone has asked a question I've felt confident to answer.
I think the support-network threads such as ddw and goaa-ywtta or 'starting chemo in XYember' serve a very useful function (even though I wouldn't have used one at the time), and I've recently tagged on to a local area one.
The problem of stalkers and fake members isn't going to go away, if people want to get to us they will.
Whilst I wouldn't (now) choose to post in a private area, if there are others who really feel it would help them, then that's fine by me. We are all different and what suits one won't necessarily suit another.
Just to close - thanks to those who've put up with my ham-fisted comments on your threads, and if you notice I've gone quiet it's cos I'm away (woo hoo!). And if burglar Bill/Bettty is stalking me and, my trained man-eating cat is guarding RevCat Towers while I'm away!
Well said Chocciemuffin.. About time this was out in the open.. It is annoying, it's like having STALKERS... xxx
Also some of us, including me, don't use Facebook for other reasons.
Can't please all of the people I guess.
I would post in open parts of the forum, particularly when new members are looking for support, but I would also welcome closed areas. I have had a couple of other issues in my life that I would like to ask for advice about from those who have befriended me on the BCC site, but because some of those problems have involved members of my family, I haven't discussed them on here. I made the suggestion to BCC several months ago, but nothing specific in response.
Here's an example of the sort of stuff that WOULD be appropriate for a "members only" section. I have had some difficulties with a very close member of my family, but I know that at least one person in my loose circle of friends "browses" on BCC, despite not having breast cancer and not supporting anyone with it, so I am reluctant to mention anything about my own difficulties. Which is a shame as I know that my friends on here would be able to put a view on things that only someone who's done the cancer rubbish would be able to understand.
I have found that friends I have made on this site I've ended up being in contact with in other ways, either via email or facebook or other groups, but I feel great allegiance to BCC and all it has given me, particularly access to others who KNOW what I'm going through. But I do feel that while I'm happy being open about (some of) my problems, there are other things I KNOW I would value views on that I just can't discuss on here, in case family members or people who have their own motives are spying on me. I know it's completely pathetic to think that people might even consider spying, and anyone who DOES spy on a BC patient without actually offering any support deserves nothing but contempt, but I know it happens - I have been contacted by a relative about a post I put on BCC - so that makes me a lot more reticent about posting.
Perhaps when the "new" BCC site it launched, a "members only" section could be considered. (PLEA TO BCC BODS, WE DO LOVE YOU REALLY!)
Enough, I'm going to see if I can get a bit more than the 3 hours of very broken sleep I had yesterday, and have self-administered several pints of my drug of choice this evening.
I have no objection to a private area, but I'm not worried if there isn't one, because I would never post anything I didn't want others to know about.
If there was a members only area, I doubt I would post in it, because I find posting on an open site puts me in contact with a broader range of experience and knowledge, than I would have if the site was closed.
Guess it's horses for courses.
It isn't difficult at all to make it completely private. That is what we do on bcpals. But I think that bcc have a very different role. I think it has a very wide membership because it is open and easy to find. When people are first diagnosed with bc they are desperate to find others they can talk to, to find information. When they start searching bcc is very easy to find on almost anything you search relating to the subject. If it were to go completely private I think many would miss out on the help they offer. I think though it is good to remind ourselves through posts like this, that the site is open to all. Sometimes I think we forget and once the posts are out there in the big wide world for all to find it is too late!
It would be interesting to see how a section of the forum would work if it could be made private. I think with the software being used her it would be possible.
To be honest it is one of the reasons I don't have my picture on here and I actually don't use my real name. That sounds terrible, but I can say that on here I do feel that I am jaynek and am entirely honest and open on here. Privacy/confidentiality is really important to us all. However to make it entirely private might be very difficult to do. Take care. J.
This issue was flagged up many years ago..especially by some of us stage 4 women who thought it would be beneficial to have our own private place.
If someone knows your username they can read all the posts you have ever written just by using advanced search..you don't even have to be logged in to read them, they are open to all. I post here less often than I used to partly because although I'm stage 4 I've moved on and also because it feels (to me) too open.
Agh! Had never thought about friends and family dipping in and out. Have changed my photo picture but will think twice about writing anything too personal from now on...
I just wanted to add my support to your suggestion. When I first logged on to this site, I never thought for a minute that friends would want to 'dip in' to my BC life - but I found one or two did. This was probably my own fault as i told them about the forum and how useful it was for me.
Like others have already stated - other sites request 'proof' that you have BC before making you a member- maybe consideration needs to be given to this idea.
thank you lucy. we just need a little privacy sometimes. pm is great, but often ladies want to discuss issues that can be quite personal.
I'll pass your feelings/comments on to Mike on this subject
Did you know we run 'live chat' sessions every Thursday evening whereby you can chat to others in real time and it's a closed session so no one else could access this unless they were registered on the forums, you can read more here:
there is another website which does exactly that-just pm me if you want to know about it 🙂
just a little corner for us inflicted with this horror would be great. something that doesn't show up via google, and gives us that little bit if respite.
Thank you emmbee, its ok, there is a closed group of ladies on facebook that nobody else can read, and I have posted on there and am feeling much better and calmer now.
I think BCC should think of giving us this place to speak Elttiks. Just a place for people with actual cancer, who need the privacy to talk about feelings, treatments etc. Ofcourse keep the main open bit for family, friends, etc to use too. But a private part just for suffers too who feel they cant open up.
i whole heartly agree. we are given privacy medically and choose to share when we feel we can, but we are all visable to all and sundry in here. i know of ladies that would like to open up about personal stuff via the forum, but feel that they have an unwanted audience. what a shame.
I discovered some time ago that it is fairly easy to google and get posts from BBC. Whenever I send something I don't want accessed, except by the person I am PMing it to, I ask them to delete the message when they have read it. Obviously I don't want my email or phone number available to just anyone.
It's really sad that you can't say what you want to without fear of discovery. If it is very important to you to get it off your chest, why don't you PM a couple of people you trust and ask them to delete after reading.
I suggest that you phone the helpline on Monday and see what they can do.
Try not to be upset. P m me if you need to.