The key word for me is "research". I knew nothing about breast cancer subtypes when I was diagnosed in March 2010. My oncologist is Dr. Beth Overmoyer at Dana-Farber Cancer Institute in Boston. She was awarded a $50,000 research grant in 2011 from the Inflammatory Breast Cancer Research Foundation (IBCRF).
In my first consult, Dr. Overmoyer explained the differences between inflammatory breast cancer (IBC) and other types, including how IBC is rare and doesn't show up on a mammogram. She impressed on me the significance of research needed on IBC, and indicated a clinical trial where she thought I would qualify as a participant. I was glad to take part in it, thinking that even if it didn't work for me, perhaps the results could help someone else.
Although many charities exist for breast cancer in general, I prefer to donate to IBCRF, as many medical personnel are unaware of IBC and its aggressiveness and uncommon symptoms, Hence, we really need to educate the medical professionals as well as the public.
On September 11, 2015, I was diagnosed with Stage IV Inflammatory Breast Cancer (“IBC”). To say that I was stunned is the understatement of the year. I have been very healthy my entire life and now at age 59 I was being told I had a disease I had never heard of and will probably die from.
Like most people these days I immediately went on-line to research as much I could about this disease. This was completely depressing and very scary, until in the course of my research I discovered the Inflammatory Breast Cancer Research Foundation (“IBCF”).
After my diagnosis in September I started chemo therapy which finally concluded on the March 1, 2016. Then on March 31, I had a mastectomy and lymphectomy and am now undergoing physical therapy while I wait to begin six weeks of daily radiation therapy. During all these treatments, it was very disconcerting to find that no-one other than my oncologist and MD had heard of Inflammatory Breast Cancer.
The Foundation is focused on assisting scientists and researchers in determining the cause of IBC, increasing awareness of IBC amongst medical staff and the public, as well as supporting research. The information, research and support they offer is wonderful. Their newsletter is informative and made me realize that I am not the only person with this disease. Everything I have learnt, specifically from this organization has made it easier for me to educate people about IBC…you don't have to have a lump to have breast cancer! They have answered my many questions with patience, kindness and speed.
Had I been aware of IBC, I might have questioned the bruise that suddenly appeared and not simply waited on it going away, I would have seen my MD sooner and the disease would have been caught earlier not at stage IV. How many other people (men and women) are treating their “bruise” like I did? How many other people right now could be saved sooner with some simple education?
I have been a volunteer all my life and have worked with various charities and organizations close to my heart, but without a doubt the IBCF has proven to be the most useful and meaningful, there is no doubt in my mind that the Inflammatory Breast Cancer Foundation is ethical, knowledgable and that any money they receive and spend is well spent.
With more recognition (& money) this organization can and will save lives!
I first became aware of the Inflammatory Breast Cancer Research Foundation because of their website, which became my "go-to" source for accurate up-to-date information about this comparatively rare cancer and the latest research about it. I have volunteered to help answer questions that come into its toll-free number, so I know how many people have been helped by this resource that can calm fears and help connect patients to the best medical facilities in their area. Since I have become a member of the board of directors for the IBC Research Foundation, I have been impressed by how the foundation stretches every dime and spends valuable resources so carefully. Direct grants for research are carefully vetted by a medical board of directors and members of the board of directors. A small organization like the IBC Research Foundation can't make huge direct research grants, but the foundation's impact on IBC research is multiplied by its Biobank with tissue samples, its patient data survey "No Lump Required," and the connections it makes with researchers at conferences and research advocacy organizations. Much of the credit for the success of the organization goes to Ginny Mason, Executive Director, who works constantly behind the scenes encouraging recognition of the needs of the IBC community such as specific guidelines to diagnose and treat IBC and the inclusion of IBC patients in clinical trials. When I was diagnosed with IBC in 1998, few resources were available for IBC patients. Thanks to the IBC Research Foundation, a patient diagnosed today needn't feel alone.
I found this group near the end of my Inflammatory breast cancer diagnosis and treatment.
It has given me great information and support. It has the most information for my diagnosis.
Their email lists helped support me as I was working through treatment. I was on a list with others in treatment and we got to share our stories etc.