Why post -

Kicks, speaking only for myself, I've posted in the IBC section (12 times over the years I've been on the board; well, 13 times now) only under two conditions.  

First is when I'm following up with someone I've been communicating with in another forum.  

Second is when I'm responding to someone who has not been diagnosed with IBC (or breast cancer of any kind) and who instead of posting in the "Not Diagnosed But Worried" forum, has chosen to post here.  If the description of her condition is clearly (and I mean really clearly) not something that sounds at all like IBC, and if there haven't been any or many responses to her post, then I might post and say something.  It's the type of post I would normally respond to if the post had been properly place in the "Not Diagnosed" forum.  Usually the advice is something like: "This sounds like a skin condition.  Have you seen a dermatologist?"

By the way, I tend to frequent the DCIS forum, and there are many women who don't have DCIS who post there. There are also many women who don't have DCIS/DCIS-Mi who provide information about DCIS to newly diagnosed women who post in other forums, such as the "Just Diagnosed" forum and the "Surgery" forum. Some of these women clearly understand DCIS and provide good information and great advice, but there are some who really don't understand DCIS at all and say things that could lead someone with DCIS down the completely wrong path or have them worrying about things they don't need to worry about.  So I understand your question and any frustration that may be behind it. But this is just the nature of this discussion board.  The only restricted forum is the Stage IV forum.

Hi Kicks, I have also never posted on IBC, but in response to your question, I think that many people post on the IBC threads because they have skin conditions on the breast which might bear some resemblance to IBC.  Since those conditions are very common and anything about breast changes seems to engender a high degree of anxiety in people (not everyone, but many people), they migrate to IBC.  Also, because for good reason, IBC, itself, engenders lots of anxiety.  I have actually, personally, reported to the Monitors one ongoing situation of that nature, which persisted on IBC way too long.  Those responders were asked to switch to another thread after I sent the comments to the Monitors (it's possible other people also reported the situation). One of my very close friends is an IBC survivor and triple neg-other breast (about 18 years!!), so I know IBC relatively intimately (she had a bone marrow transplant, which was common back then). I wouldn't normally post on IBC, but I pray for you all and wish you all the best.