Topic: IBC DIAGNOSED, LETS SHARE OUR STORIES!

I would love it if all who have been diagnosed with Inflammatory breast cancer would share their story.  Because this form of breast cancer is rare, please post your process of being diagnosed.  Also tell us when you were diagnosed, what treatments you have had, and how you are currently doing. 

I know when I have read about the prognosis of this form of BC I felt like I would be dead within months. I think it would be most helpful for others to be able to read about actual womens experiences....

So here is my story....

 I was diagnosed back in May 2007, when I was 28 years old.  I had been having problems with my breast for almost a year.  I was nursing a baby, so the dr kept on attributing my symptoms to that.  At first my breast was horribly itchy, no matter what I did it itched and drove me crazy.  Then, one day it got really painful and swelled, bright red skin.  Doc said mastitis.  Gave antibiotics.  Got worse.  Ended up in ER with IV antibiotics.  Bright fiery red color went away.  Breast was still enlarged and pinkish purplish bruised looking.  Breast continued to grow and grow.  Nipple inverted, orange peel skin, stabbing pain into my armpit.  Dr said scar tissue blocking the milk ducts is causing the swelling and discoloration.  Skin steadilly gets thicker and covers a bigger area.  Read about IBC on THIS website, said OMG that is what I have.  Demanded an appt. with dr.  Saw him next day, insisted it was scar tissue from milk ducts.  Another month goes by, I don't feel right.  See DR again,  Demand a biopsy.  Refers me to a surgeon.  Have an ultrasound, only see cysts.  Surgeon one wants to aspirate the cysts.  See 2nd surgeon.  He looks extrememly worried.  He checked my lymph nodes in my armpit. Not a good sign.  Gets me in for a mammo the next day.  Mammo takes almost an hour, taking pic after pic after pic.  Then they want to do an ultrasound.....  Radiologist comes in...  This is really serious.  WHAM, we believe you have inflammatory Breast cancer a rare agressive form of cancer...  HMmmmmm  oh really????  Biopsys next day, as well as bone scan...  (I had been going to 4 different drs for horrible pain in my back and hip as well.....  cancer was found there also).  Mets also to a spot in my lung.

Started Herceptin the following Tuesday with Zometa.  Port placed thursday.  More chemo on Monday Taxol.  Have been doing weekly Taxol and Herceptin since.   I have one more treatment, and then I will be moving on to my MRM next week.  Once that heals, I will have radiaiton, and then be on weekly herceptin, um, forever.  Cause that is how long I am gonna live!

Please, please post and tell us about your diagnosis and treatments.  I would love to connect with others who are battling the same monster that I am.