From the President of the IBC-IC: Massimo Cristofanilli, MD
Dear IBC community,
I am proud to announce the activation of the IBC-IC website! This is a significant moment in the history of Inflammatory Breast Cancer (IBC) research, education and awareness. As a community, we are aware of the tremendous impact IBC has had over the decades. Women wake up one morning discovering that they have developed a large, red and swollen breast without a lump or fever—and gain no relief in spite of being recommended antibiotics. Weeks and sometimes months may pass before they eventually find out that they have developed an advanced form of breast cancer: inflammatory breast cancer.
And so the journey begins, their lives forever changed. The questions will start: “Why was it not seen on the mammogram? Why did I get this tumor? What stage is my cancer? Can it be cured? Can I have reconstruction?” Many times, their treating physician will have little knowledge about their disease and they will simply state: “This is just breast cancer and will be treated as such!” But we know that IBC is not just breast cancer—and should be treated differently!
Due to this lack of knowledge and awareness of IBC, women begin to investigate using what they trust: the internet and social media. The images and statistics on the internet provide a dismal prognosis, and the sites are focused more on alarming individuals about IBC rather than informing them about the disease.
This is what makes the Inflammatory Breast Cancer International Consortium (IBC-IC) so important! Our site will provide information on how clinicians and scientists join forces in searching for the cause, biology and advanced treatment of IBC. This community of researchers and clinicians wants to be prepared to answer and address your questions before it is too late. The IBC-IC brings together global specialists, because this is a problem not only in the United States, Europe and United Kingdom: it also affects and takes lives worldwide.
Though we have had dedicated IBC conferences held bi-annually since 2008, we have been unable to provide a forum for the IBC community—until now. There is a great need as the established Cancer Conferences (e.g., ASCO, SABCS) continue to neglect discussions on IBC. The reports and summaries published from these conferences are vastly unknown. More importantly, it is difficult to find IBC specialists and clinical trials when in need: at time of initial diagnosis or recurrence.
This is the reason we celebrate today. You can find all the information developed by IBC specialists who understand and study the disease every day right here! We want to make sure you can access reliable sources regarding IBC; at the same time, we invite you to join our community and let us know how we are doing and inform us of your needs. We will be here to listen and help, anytime and anywhere!
As a not-for-profit, we ask for your support to ensure the required resources needed are available for funding research exclusively performed, prioritized and selected by the IBC community and not by outside entities that are not familiar with the disease. Please consider making a gift to support our mission.
In closing, I would like to confirm our lifetime commitment to make a difference in the fight against IBC. In spite of all the statistics, there is a bright future because we have advanced our knowledge by working together as a team. The answers are within reach to solve the mystery of Inflammatory Breast Cancer!
Massimo Cristofanilli, MD, FACP and the IBC-IC team