putting IBC on the map

tlarnold

I am an IBC patient and I have loved the support that IBC women show each other and how they are so pro-active in not only fighting this monster disease but also in increasing awareness. I live in a small town on the edge of Houston, Texas called Friendswood. I knew I would be meeting IBC women at MD Anderson Hospital or on IBC threads, but I am shocked to be meeting IBC women in my small community! It caused me to wonder j...ust how many of us are there in IBC land. I am putting together a map showing the locations of any and all IBC patients so we can look for clues as to a cure for this disease.

this is how the map looks www.terrysmap.org

I respect the privacy of IBC pages or any list I come across, but I am asking women who wish to contact me for this mapping project to please do so. Email me at tlarnold(at)sbcglobal(dot)​net or message me privately via facebook. Your comments are welcomed to posted below, but that will not place you on the map.

The information I wish to gather is not overly private. I need your name, location, diagnosis date, etc... This would be similar to the common information which you already post on threads or facebook. However, I will only use information that you actually send me. If you are a family member of someone lost to this disease, I would love to hear from you as well. Updates or feedback on this effort will be given as possible to show you our progress.

I am only looking for IBC women or men, please understand that we are focused on Inflammatory Breast Cancer, so if you are interested, please email or fb me and I will send you the short list of questions. I promise that any information that is sent to me will not be shared with anyone without your direct consent.

Thank you,

I am looking forward to your reply.

Terry Arnold

dx, Sept 2007 IBC Stage IIIB left breast, Breast Cancer right breast, triple negative.

NED since June 2008

Anonymous

Just an aside - I just got back from MD Anderson two days ago and was surprised that they have a special IBC clinic there.  If memory serves me, they had 2 or 3 breast onc's and several other staff devoted to this.

tlarnold

The clinic is very large, and leading in research.  http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/breast/services/index.html

 I know of 5 breast onc's, about the same for rad onc's and 4 ibc surgeons.  

Are you an ibc pt? 

Anonymous

NO, actually ILC.  I was hoping to find an ILC clinic there too but noticed the IBC instead.  It was right across from where I sat in the waiting room.

tlarnold

ok, well I hope you are doing well.  Terry