"Rare breast cancer is deadly"......Dr. Gott

I wanted to post in response to the news article "Rare breast cancer is deadly", the Dr. Gott column that ran recently in many national newspapers.  As a 15 yr survivor of inflammatory breast cancer I know first hand how aggressive and deadly this cancer can be, but I also know that there are more and more survivors.  Unfortunately mammograms don't typically find inflammatory breast cancer (IBC) so it is important for women (& men) to pay attention to breast changes.  If you have rapid increase in breast size; change in the color, texture or thickness of the breast skin; have pain or itching; what looks like a rash, bug bite or bruise that doesn't go away; or other breast changes that do not resolve in a 2 wk time period....SEE YOUR DOCTOR!  You'll have to be your own advocate when dealing with a cancer that typically doesn't have a lump.  Also, remember that chemo is the first line of treatment for IBC.

This is not a new disease.  The first articles written were in the 1800's with the most detailed in 1924 by Drs. Lee & Tannenbaum.  Fortunately more people have become aware in the past few years and that is a good thing.  Research is needed to help determine why this cancer is so aggressive, striking younger women more often as well as more African-American women. 

I have been involved with the Inflammatory Breast Cancer Research Foundation since it's beginning in 1999.  We are involved in many research projects, have an extensive website, 2 email discussion lists and a monthly e-newsletter.  Please visit our website for more information: www.ibcresearch.org.  If you have questions about this disease, feel free to ask!  I'm grateful to be around to answer!!

Your post gets right to the heart of the situation...education.  When I was diagnosed with IBC in August 2007, my primary care physician wanted to set me up for surgery ASAP.  I had to inform her that my research online (thank you, ibcresearch.org) said that chemo was the first treatment.  If I can do research and learn what "might be ailing me", why can't a doctor?

I knew after reading and researching that I had either mastitis or IBC.  At age 65, I was pretty sure it was  probably IBC and not mastitis.  Yet, I was forced to go through two different 10-day antibiotic treatments since the doctor was pretty sure it was probably mastitis.  I finally got a diagnostic mammo, specifically looking for the "sheeting or nesting" of the tumors in IBC, and the report suggested I get a biopsy to rule out IBC.  In my case, it was to rule it in.  The surgeon did 4 separate biopsies on my breast and they confirmed the diagnosis of IBC. By early September, I was getting my first chemo treatment.  My last chemo was in March of 2008, followed by a right MRM in April and almost 7 weeks of daily radiation in June/July. 

Every day now I take this tiny little white pill called Arimidex to hopefully keep the cancer from recurring.  Wicked side effects...oh yes; but if it works, I'll take it for a full 5 years.  It's now been almost a year since I saw my oncologist, and I will see him for my follow-up in August.  I have no idea if he'll order any tests or if I have to have a specific complaint to get any testing done. 

My heartfelt thanks to all the wonderful people I've met through my association with ibcresearch.org.  They are the ones who educated me and now it's my mission to educate everyone I come in contact with every day, including the medical profession...especially the medical profession, I should say.  No one should be misdiagnosed or have their diagnosis delayed because their doctor isn't aware of the signs and symptoms of IBC.  Note:  I only had one symptom and was even told I didn't have enough of the symptoms to have IBC.  Yeah, right. Gotta educate these doctors and also make everyone aware of the signs and symptoms of IBC (Inflammatory Breast Cancer).