Inflammatory Breast Cancer

Hi,

I am doing research on IBC, and I've not been able to find much information. I am looking for statistics such as how many have been diagnosed, how many survive, etc.

I'm also looking for information on treatment options. Even a call to Cancer Treatment Centers of America (the first call I've had a chance to make) turned up empty, referring me only to websites that I've already visited.

Can anyone here refer me to any resources that might answer this question?

As a woman with IBC, I would direct you to ibcsupport.org (check their archives for discussions about statistics, etc.) and eraseibc.com (for plenty of info about IBC).  These are the two sites that I visit daily. Be sure to listen to the podcasts of IBC shows at eraseibc.com.  One is with Dr. Massimo Cristofanilli of M. D. Anderson in Houston, TX (the first IBC clinic in the world).  Just remember that statistics are based on what's in the past.  There's a whole new world of treatments coming up and a lot of research devoted to IBC.

There are still way too many people in the general population, as well as many in the medical profession, who are totally unaware of IBC and its signs and symptoms.  My goal is to educate as many as I can.

On 9/24/2009 Claudia413 wrote:

As a woman with IBC, I would direct you to ibcsupport.org (check their archives for discussions about statistics, etc.) and eraseibc.com (for plenty of info about IBC).  These are the two sites that I visit daily. Be sure to listen to the podcasts of IBC shows at eraseibc.com.  One is with Dr. Massimo Cristofanilli of M. D. Anderson in Houston, TX (the first IBC clinic in the world).  Just remember that statistics are based on what's in the past.  There's a whole new world of treatments coming up and a lot of research devoted to IBC.

There are still way too many people in the general population, as well as many in the medical profession, who are totally unaware of IBC and its signs and symptoms.  My goal is to educate as many as I can.

I know. And it saddens me that so many people don't know about it. It's also quite surprising to me that so many doctors don't automatically try to rule out breast cancer when a woman comes in with symptoms on or near the breast. But then, today doctors are slaves to insurance companies and testing like that I suppose has to be warranted. But I bet it sure could up the survival rate quite a bit.

I don't have cancer, but my mom passed away from breast cancer that progressed into her bone and then brain. She didn't have IBC, but she lost valuable time because of one inept doctor. Since then, I'm trying to get word out and such.