I was diagnosed with Inflammatory Breast Caner in August of 2005.  It is a very rare form of Breast Cancer.  It is the most aggressive of all Breast Cancers.  However, I am happy to report that the prognosis for us has gone up dramatically within the last few years.  Instead of a mere 3% of us surviving past 3 years, as reported in last months e-mail.  Our prognosis for a 5-year survival is around 50% and that figure should be rising with the addition of Herceptin to the drug arsenal.  The new protocol of doing chemotherapy prior to surgery has also improved our prognosis.  

What has hindered our prognosis is the lack of information regarding the symptoms of I.B.C.  Women as well as doctors have been trained to recognize lumps as a warning sign.  They rely on mammograms to detect all cancers.  I.B.C. rarely presents with a lump.  Only 50% of all cases ever have a lump.  This is because I.B.C. grows in the lymphatic vessels of the breast.  It grows in sheets, which is why a mammogram will not usually pick it up.   

I.B.C. symptoms typically are a red, swollen, warm, or achy breast.  The nipple might invert.  The skin might change texture.  Most doctors have never seen this type of cancer and will treat the symptoms with antibiotics or time – which is one thing there is little of.  Women need to get themselves to a Breast Cancer Specialist A.S.A.P.  

I remember when I was diagnosed.  I was given a book on Breast Cancer.  There were 4 lines about I.B.C. in this entire book of over 300 pages.  The 4 lines were dire.  I proceeded to the Internet, where I found scarce information. I did not realize that I had to check dates on articles as things had changed rapidly in a short period of time. I came away from the Internet even more terrified.  I want to assure women that are newly diagnosed there is so much hope for them. Advances are being made all of the time. The most important thing is to get into treatment quickly with a reputable Cancer Center as quickly as possible. The second thing is to look for the latest information available when doing your research.