If you can't say anything nice ...

So true! I feel like a few posters just scan the boards to scold new and scared members. Not everyone knows exactly how these boards work at first and maybe they posted something on two different threads, or maybe they don't know how to fill out their profile at first but sheesh, give them a break. It's not a good feeling to be shut down while asking questions on such a sensitive and personal subject. I'm not sure this is exactly what you're talking about but it's something I've seen and experienced and it's just not necessary or helpful.

Yup, the first time I posted something, I had just been diagnosed and was a mess, and I was immediately told by someone that I posted the "wrong" way. I deleted my post, and waited before posting again. I was of course oversensitive, but I had every right to be

NotVeryBrave, I agree with most of what you said. Everyone should always aim to be polite and respectful when they respond to posts.

I spent years responding to posts in the Not Diagnosed forum. It's a lot of work, and you spend your time answering the same questions over and over again. You often are dealing with scared newcomers who are thinking irrationally, and who sometimes don't accept logical, sound, experienced advice or who may ask the same questions several times even after the question has been thoroughly answered. Or perhaps after you've taken the time to write and post your response, you find out that there is more/different information that's been left out or even sometimes posted in another thread, changing the situation and making your reply irrelevant (and a waste of your time). In trying to offer advice that is appropriate to the situation, you sometimes have to address the inappropriate advice that's been offered by others, who either don't have the knowledge but are trying to be helpful, or who may be too close to their own diagnosis to appreciate that what was good advice in their own situation isn't necessarily what's right in a different situation (not everyone needs an MRI or a biopsy, for example). In trying to offer advice that is accurate and realistic, you sometimes have to address other information that's been posted that is factually incorrect - and sometimes you get flack for doing that (you have no idea how many nasty PMs and responses I've gotten to posts that I wrote as carefully and politely as possible, but where I necessarily contradicted/corrected someone else's advice).

And that's why, "it seems to be the same frequent posters". Of course it is. It's only the frequent posters who deal with this day in and day out, and who as a result sometimes hit the boiling point and get frustrated. Posters who occasionally pop into the Not Diagnosed Forum (or even the Just Diagnosed Forum) don't have the same build up of frustrations. How many of you responding here have the experience of regularly responding to newbies, and have been doing it for years on end?

"You don't have to respond. Someone else will most likely come along and help that person." But therein lies the problem. I finally decided that I couldn't deal with all the garbage that comes along with trying to offer accurate information and support to newbies, so like so many before me, I gave up. Over the years I've made almost 2,700 posts in the Not Diagnosed Forum but only 35 posts over the past 2 years. It used to be that there were lots of experienced 'regulars' who posted to newbies; these days there are only a handful of knowledgeable posters who frequent that forum and who are always available to address newbie's posts. If one of these few people don't respond, often no one will.

I am not defending impolite posts and I admit that I cringe sometimes when I read replies that come across as being too harsh. But I am defending those who continue to regularly offer their support and advice to newbies. This board wouldn't exist without these people. It's easy to criticize. I'd rather see something done - and suggestions have certainly been made over the years - so that it's less frustrating for those who regularly offer advice in the Not Diagnosed (or Just Diagnosed) Forums. That would be a good way to address this issue.

Yes, be nice!

I agree we all definitely need to be nice and be compassionate. But it would also be nice if everyone (including new posters) read the intro info on posting etiquette and guidelines for posting in general and for the particular forum before posting. 1 poster had 3 or 4 different posts with similar subject lines that asked the same question in the body of the post. That is frustrating. I think it happens because they're not getting replies as quick as they would like. I saw the other day where someone started posting questions in a forum that was clearly labeled by the mods that posts are not allowed. Just saying it's a 2 way st

I think if some of the frequent posters are FRUSTRATED they need to back off and take a break so that frustration doesn't come through on a Newley diognosed scared person. Let it will are all here to help in any way we can. I have seen this a lot lately and had yo say something. I wish everyone here the best and I know they are really trying to help but maybe they need to step back and remember the first days and weeks of being diognosed. This is the best place for advice. It is comforting the people are so giving of their time. I know they mean well just be nic

Luckynumber47, you're correct in saying that those members will never get that it's them that we are talking about. Hopefully they will take a little time to reflect instead of being defensive. There is a place for everyone here

Notverybrave, you are completely right! Thank you for saying it and in a polite and respectful way. Much luck to you.

I snark at posters who have been given a benign diagnosis (often repeatedly) and keep coming back expecting to be coddled by members with cancer. One in particular has been here for 4 years. I realize it is futile since they are welcomed by the moderators and other posters with benign Dx. I am not sorry about how they feel about it but do wonder why I bother (old habits die hard).

I do however regret making anyone who actually has a cancer diagnosis uncomfortable reading those rants. I apologize for that.

I believe I am fair to those who have a legitimate concern and seek information until they receive a diagnosis one way or the other. I have never been mean to someone diagnosed with cancer.

Older posts are hard. I've seen many newbies post on a forum, probably scared out of their mind like I was at first, not realizing the thread is years old. With ever changing and newer treatments, sometimes older forums just aren't relevant anymore, and some of them go to scary places and get off topic. The best forum for me was attaching myself to the chemo forum, or radiation forum, or triple positive forum, or Her positive forum, for the month I entered treatment. That way I got posts from women and men going through the same thing I was, and at the same time. And people would also post who had completed treatment, and most of the time their advice was of great value. Like encouraging people going through treatment that it is doable.

SpecialK comes to mind immediately, I asked her lots of questions on forums and also in pm conversations. She knows her stuff, and is extremely nice. Our chemo forum would routinely say I have a question, SpecialK, where are you lol! I think BarredOwl is another one, her posts are factual and always courteous.

The Not Diagnosed forum is very hard to respond to because there isn't enough data yet to really respond, other than to offer words of encouragement. I have seen charts posted by a few people that include a decision tree and likelihood that what is going on will turn out to be cancer, and those are really helpful.

I sometimes read the John Hopkins forum and it is nice because there is a nurse on there, Lillie I think, who is also a breast cancer survivor, and she gives out great advice. We have djmammo who I think is a radiologist, it would be nice if this site had more experts involved in the responses. Newbies have symptoms or have had mammograms or biopsies with specific words, and they are trying to understand what the words mean. That is where Lillie, or djmammo, are invaluable. Like I was told my tumor was "taller than wide", and after reading the John Hopkins forum I realized those are bad words to be told. But not always.... I see Lillie post a lot of times "please refrain from posting the same question more than once" which I think is a nice way to tell people to avoid multiple postings on the same subject

So maybe the Moderators could consider involving more experts in their team of Moderators, especially for not diagnosed or recently diagnosed people.

With that particular Forum, which is not for member posting per the small print, the Moderators will eventually move the original post and any replies to an appropriate forum (but they aren't very active on Sundays). Once a thread has been started there, one may as well reply (despite the rules) to ensure the original poster does not give up on waiting for a reply or lose track of her post and never see the advice (which was important)

Women are told to "be nice" all the time. "Being nice" is code for keeping your mouth shut, being passive, docile, and following along with what people want you to say and do.

As women, we are conditioned to make others feel comfortable even at our own expense; to not rustle any feathers, to just go along as polite and sweet. We don't even realise it, but we are conditioned to conduct ourselves this way from a young age.

Nice is a way of downplaying opinion. It's a way of telling women (never men) that what they think isn't pretty or ladylike and therefore, it doesn't matter. Being told to be nice is one of the most condescending things you can say to another person or have said to you. It makes the person being told to be nice feel small.

Our conceptions of what is considered "nice" can be perfectly seen in women's automatic need to say sorry for everyday things that need no apology. Someone bumps into us, we say sorry. We are given the wrong meal, Im sorry, I dont want to be a bother, but there seems to be a little mistake with my order, but if it's any trouble I will just eat it, even though I am allergic to seafood.

In many ways girls and women would be better off if we learned not to be nice, but to say what we mean and ask for what we want.

Whatever you do, do not have, let alone express a strong opinion on anything because that just makes you a bitch. (rolls eyes).

Another message board I frequent has as its main rule "Don't be a jerk." That seems reasonable.

I'm glad that some of the discussion has moved to a more constructive "why is this happening? and "what can we do?" rather than just complaining about the occasional post that is too blunt.

Some thoughts:

• I noticed that one frequent poster was criticized, just within the last couple of days, for suggesting to someone newly diagnosed that "it would be helpful" if this individual stuck to a single thread. The post was, to my reading, very polite and the poster explained the reasons behind her suggestion. To BarredOwl's point, the post was well-intentioned, with the objective of ensuring that the new member receive the best possible and most relevant replies (which is more likely if those who reply are able to see the whole history and all previous replies). I was really taken aback to see that two individuals openly criticized this frequent poster for making this request. My thought, in reading the criticism, was "if you can't say anything nice...".

• To the issue that the frequent poster mentioned above was trying to address, it would be helpful if the "no cross-posting" guidance was more prominent at the top of forums that newbies frequent, and if it included an explanation as to why sticking to a single thread will result in more relevant responses. This would allow others like this frequent poster to simply reference this guidance rather than have to explain it themselves to newbies, risking upsetting the newbie or being chastised by others here.

• It would also be helpful if, for a period of time, newbies were restricted to starting one or two threads only within specific groupings of forums, thereby forcing them to keep all their information, and all the responses they get, in one place. The forums are already grouped together by category, "Not Diagnosed But Concerned", "Tests, Treatments and Side Effects" and at least initially, most new posters would benefit (in terms of the quality of replies) from having only one thread in each of these broader categories. This would hugely cut down on the number of posts that people here judge to be "not saying anything nice".

• What if we could close our own threads? As in checking a box, "Thank you, I've received the answers I need on this topic" and then the thread is locked. And what if there was an easy way to link a closed thread to a new thread that is opened, so that when new threads are started on new topics, those who respond can still easily find the full history with just a single click?

• To comments previously made, it would be great if the search function on the board could be updated (and defaulted to relevancy) so that it's easier for newbies, and those responding, to find earlier posts on the same topic.

• To the suggestion about having Experts on the Forums, that certainly would save the regular posters a lot of frustration, and reduce the number of posts that are deemed to be "not nice". It would be great if BC.org had a Medical Expert of their own available to reply to posts, or even just to pop onto the board to provide corrections in response to erroneous (but usually well-intentioned) advice or information. However I agree with Traveltext that this isn't likely to happen; it's been suggested before and nothing's come of it.

• As an alternative, what's also been suggested is that some members be designated as "Expert Members", or some term like that. Many other websites do this as a way to give their more senior/experienced members greater credibility. Currently newbies have no way to distinguish between a poster who knows her (or his) stuff vs. someone who is supportive and sincere but provides erroneous or misleading information (number of posts is not a good substitute). This is one of the biggest problems on this board and a leading cause of "not nice" posts. Of course with so many topics on this board, no one is an "expert" on everything (except maybe BarredOwl, thanks to her incredible research abilities). Therefore "Expert Members" could be designated by category. Some examples: djmammo "Expert Member - Diagnostic Testing"; MelissaDallas "Expert Member - Not Diagnosed But Concerned" and "Expert Member - LCIS"; Binney4 "Expert Member - Lymphedema", Traveltext "Expert Member - Male Breast Cancer", etc.... With this type of designation, new members would have more confidence in the replies that they receive, and might understand that if they get conflicting advice, there are some replies that perhaps deserve more weight than others.

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Okay, that's my list for now. Honestly, when I think of all the suggestions made over the years (and never implemented), I don't expect anything I've said here to be considered, although it would be a nice surprise if some of them were.

Still, the issue of "not nice" posts is a real issue, but rather than criticize (and insult, as in some of the posts here) frequent posters who occasionally get frustrated and slip up, I think we should acknowledge the contribution that these individuals make to this site and urge BC.org to find ways to make it easier for these very valuable members to continue to offer their support and advice to newbies. That's a nicer approach, don't you think?

Edited for grammatical errors only.

I'll add that it's important to remember that even if a long-time poster is seeing the same perceived posting problem for the hundredth time, it's most likely that the person making the error is new and doesn't yet know how to use this message board. Many people appear to find BCO through a Google search that leads them directly to a thread, not the main page or a forum. Some errors and omissions will be inevitable.