In recent years, there has been a lot of education about breast cancer. Women have been taught how to perform self exams and guidelines on receiving mammograms. With this education, we have seen the death rate for breast cancer decrease. According to the American Cancer Society’s Breast Cancer Facts & Figures published in 2011, breast cancer death rates decreased 2.2% per year from 1990 to 2007. The percentage decline was larger among younger women where death rates decreased by 3.2% per year among women younger than 50. The decline in breast cancer mortality has been attributed to both improvements in breast cancer treatment and early detection. However, not all forms of breast cancer can be detected with traditional self exams or mammograms. Inflammatory breast cancer tends to grow in nests or sheets, rather than a solid tumor.
In December 1996, an e-mail list was created to provide emotional support and education for inflammatory breast cancer (IBC) patients, their friends, and families. A couple years later, Owen Johnson created the Inflammatory Breast Cancer Research Foundation along with others from IBC support list to focus on facilitating research of IBC. Owen lost his wife to IBC and was moved to do more since little was being done at that time and he felt there was a need to be a voice for action.
The Inflammatory Breast Cancer Research Foundation is dedicated to facilitating research to improve diagnosis, treatment, and survival of inflammatory breast cancer while also raising awareness of the disease in the lay and medical communities. The foundation is an independent from any specific medical facility or academic organization, so they can truly act as advocates for those who contact them.
In 2005, the foundation began an inflammatory breast cancer bio-repository to aid researchers in the study of IBC. The Inflammatory Breast Cancer Research Foundation BioBank is one of just a handful of advocacy owned and operated tissue banks in the country.
In addition to the BioBank program, the foundation provides information via their website and monthly e-newsletter. In addition, there is a toll-free number and website contact form to allow individuals to access a trained volunteer with questions. An email discussion list allows individuals to share information, education, and support to those in the IBC community. In addition, they worked with the National Comprehensive Cancer Network (NCCN) to develop a specific treatment guideline for inflammatory breast cancer and update the Breast Cancer Screening Guidelines to include detailed and thorough steps to rule out inflammatory breast cancer in patients presenting with skin changes. These were both much needed materials to improve the diagnosis and treatment of patients.
How can you help?
- One important way that anyone can help is to spread the word about IBC. Some simple ways to do this are to share this post on Twitter or Facebook. You can also print an informational brochure from the IBC Research Foundation’s website to share.
- Donations to the foundation are also accepted via their website. You can also run a fundraiser to benefit the foundation.
- In addition, individuals affected by IBC can be an advocate in their community by sharing their story in the media or with groups. There are opportunities for individuals to represent the organization at various functions. You can contact them via their website if you want to learn more about volunteering.
To learn more about the Inflammatory Breast Cancer Research Foundation, please visit their website, www.ibcresearch.org. You can also connect with them on Facebook, e-mail, their Cause page, or phone (877-786-7422). In addition, the original online IBC support group still exists at www.ibcsupport.org.