I have heard of women being given the dx of IBC, only to go to the IBC clinic and find it is not. Our board member Patty Jennings was misdiagnosed with IBC, and then correctly diagnosed with 'invasive'. Unfortunately her lung mets were so far advanced she lost her battle just this last Feb. She was my friend and I never saw such a fantastic attitude during her ordeal.
Again, unfortunately there are too many women misdiagnosed...either with IBC or as non-IBC.
I know this doesn't answer your question, and I do understand your predicament. If the doctor with the biggest amount of IBC patients and the data base feels you do not have IBC, my gut feeling would be he is probably right. But of course I am a bit biased and have seen his work, and know his patients.
My daughter wouldn't go to Texas, and I begged her to go with me. But that is another story.
If you ever want to talk, I'm here Leslie. I don't know how I send you a private post to give you my phone number, but would be more than happy to talk with you.
Patti
Patti Bradfield, President
Inflammatory Breast Cancer Foundation
www.eraseibc.com
The IBC Foundation Radio Show live and podcasts from previous shows
www.thruoureyes.org/ibcshow.html
www.komonews.com/ibc/