Available online 21 November 2023

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Patient advocates, referring to those individuals that have been diagnosed with the disease for which they advocate, are essential stake holders in healthcare. For those facing the stages of being diagnosed with Inflammatory Breast Cancer (IBC), the “call to advocate” is an immediate response to being diagnosed with a rare and aggressive disease that progresses rapidly, often in a matter of weeks or months. There is a great stigma and bias in the medical community that has inhibited the education and study of IBC. A lack of understanding of the disease, how it presents and how to treat it leaves many IBC patients facing misdiagnosis. Communication is a cornerstone of healthcare; this goes beyond the patient-provider dynamic. Education of IBC must be a grassroots initiative. There should be no barrier to care in the diagnosis, treatment, study and survivorship of inflammatory Breast Cancer. It is not just an oncologist’s lesson to learn, but that of all providers in healthcare. In this chapter you will hear how 4 women who were diagnosed with IBC faced the difficult tasks of navigating through the healthcare system on their own and came out on the other side using their experience to help others. In conclusion, in defining the evolving roles of Patient Advocacy in IBC over the past 25 years, we examine what has been done, along with its challenges, and what work still remains from the perspectives of different patient advocates.

Section snippetsJeannine Donahue—Breast Program Manager Weill-Cornell Medicine

When I underwent a bilateral mastectomy in October 2007, I was days away from my 27th birthday. I was a shell of my once vibrant myself, having gone through chemotherapy post my diagnosis of Stage IIIb Inflammatory Breast Cancer (IBC) 6 months prior. My little sister was 14 years old; My brothers were in high school; I was my parents first born. I was told by doctors that I was “too young to have breast cancer” and that my symptoms of a swollen breast, pain and a rash were nothing to be

Ginny Mason RN, BSN—Inflammatory Breast Cancer Research Foundation

My view of inflammatory breast cancer (IBC) advocacy is from three different yet overlapping perspectives. I was diagnosed with stage IIIC inflammatory breast cancer in 1994. At that time, I was working as a nurse in outpatient mental health. My introduction to advocacy began with local October awareness raising events, Relay for Life, and the “willing” speaker for various local groups who wanted to hear from a cancer patient. Being invited to serve as a consumer reviewer for The Department of

Joshlyn Earls—Founder/CEO Fighting 4 the Tatas Breast Cancer Organization

In November 2010 my Chiropractor gave me a full body X-Ray. He told me I had some calcifications in my body (on the left side, below my breast) and he was afraid it might be cancer and wanted me to see an internist which I did and was scheduled for a mammogram on February 11, 2011. By this time, I was having sharp stabbing pains in my right breast. Another mammogram on March 16, 2011, showed clear, but another mammogram was set up for April 18th. I didn’t think I could scream until I had that

Valerie Fraser—Scientific Cancer Research, Education and Public Policy Advocate—Inflammatory Breast Cancer International Consortium

In 2023 I will have survived 16 years as an inflammatory breast cancer patient. Surviving, particularly for those of us with IBC, means never completely feeling confident that we are “out of the woods” since recurrences can happen several or many years down the road. Those of us with metastatic IBC can be faced with the unwanted challenge associated with life-long treatment. IBC may be 1–5% of all US breast cancer cases, however it accounts for 10% of all deaths. As IBC patients, we are

Peggy Stephens—President—Inflammatory Breast Cancer (IBC) Foundation, EraseIBC

At age 43, married with two young children, I was diagnosed with Inflammatory Breast Cancer (IBC) in April 2007. As is typical with IBC, I was initially misdiagnosed. When I first noticed something was wrong with my breast, I made an appointment with my doctor. She told me it was mastitis, even though my son was 3 ½ years old and I hadn’t breastfed him for over 2 years. The doctor looked me in the face, who had minimal information and experience with IBC, dismissed me when asked what she knew

Heather Pirowski—Newly Diagnosed IBC

I was diagnosed with Stage 3 Inflammatory Breast Cancer three years ago. I try not to think about how different my breast cancer journey would have been if I had the information and knowledge that I have now, but the “what ifs” still occupy my thoughts more than I would like to admit. We grow up thinking that doctors are all-knowing and trust that they have all the information, so there’s no need to question them. This is why sharing our individual stories are so important. This is mine.

With no

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