In 2013, at the age of 38, I was diagnosed with stage three inflammatory breast cancer (IBC), a rare and aggressive form of breast cancer. Next year, I will celebrate 10 years since diagnosis, a significant milestone for someone diagnosed with this disease and is especially rare for a Black woman.
There are very few stories of Black women surviving Inflammatory Breast Cancer because, quite simply, most don’t live to tell their stories. This disease needs more attention and research – but without more Black women surviving, who is alive to tell our story?
For this reason, I am on a quest to find 100 Black women survivors of this rare and aggressive form of breast cancer.
I hope that by sharing my story and connecting with other Black women who have faced this disease, we can help increase awareness and understanding of this type of cancer.
IBC: What is it?
According to the National Cancer Institute, inflammatory breast cancer (IBC) is a rare and aggressive form. It can be mistaken for mastitis, a breast infection, or another form of locally advanced breast cancer. IBC accounts for one to five percent of all breast cancers diagnosed in the United States annually.
Symptoms of inflammatory breast cancer include redness, swelling, and pain in the breast. IBC is more likely to be diagnosed at a younger age and more aggressive than other forms of breast disease. An early diagnosis of IBC is critical to successful treatment because at diagnosis it is either stage III or IV; however, due to misdiagnoses, there are often delays in diagnosis and treatment.
Treatment for IBC typically involves a combination of surgery, radiation, and chemotherapy.
To provide a sense of the aggressiveness and rarity of the disease, about 10–15% of all breast cancers are triple-negative. In general, about 91% of all women with triple-negative breast cancer are still alive 5 years after diagnosis.
About 1-5% of all breast cancers are IBC. About 42.5% of all women with inflammatory breast cancer are alive 5 years after diagnosis.
Black Women and IBC
The chances of developing IBC are 70% higher for Black women than for white women. It affects 4.5 Black women out of 100,000 compared to 2.6 white women. Recall that 42.5% of all women with IBC live 5 years after diagnosis. For Black women, that number drops to 29.9% at 5 years and 18.4% at 10 years compared to 30.7% for white women.
42.5% of all women with IBC live 5 years after diagnosis. For Black women, that number drops to 29.9% at 5 years and 18.4% at 10 years compared to 30.7% for white women.
A Black woman presented with symptoms of this rare and aggressive form of breast cancer faces discrimination during the diagnosis and treatment process. She has the additional burden of navigating a healthcare system with “practices and policies that promote structural racism.”
Black women have long been underserved by the medical community. From being denied pain medication to having their symptoms dismissed as psychological, black women have long faced discrimination in the healthcare system. This discrimination can lead to black women not getting the treatment they need and not being listened to when seeking help.
There is a lack of awareness about IBC among both patients and medical professionals which also contributes to its delayed diagnosis.
When faced with something often misdiagnosed and aggressive, like inflammatory breast cancer, the addition of unequal treatment by healthcare providers can lead to death.
There is little room for delay. Speed and access to knowledgeable healthcare professionals are of the essence.
Otherwise, the lack of urgency to properly diagnosis and treat Black women facing such symptoms may result in a more advanced-stage disease and poorer outcomes.
This needs to change. These disparities underscore the need for better education and awareness about IBC among patients and medical professionals. Black women should be encouraged to seek prompt treatment if they experience any changes in their breasts.
My Experience with IBC
Two months. It was nearly two months from when I first noticed signs that something was wrong with my left breast in late January 2013 until I began treatment for Stage 3 Inflammatory Breast Cancer (IBC) in March 2013. The day after I noticed something was wrong, I scheduled an appointment with my primary physician. A breast exam did not detect lumps, so I was diagnosed with mastitis. However, the doctor ordered a mammogram to be cautious.
The mammogram was scheduled for the next day and did not detect cancer. A couple of weeks later, my left breast had swollen to the point that I couldn’t button my shirt. I immediately sought an appointment with a local breast surgeon. On the call with an appointment scheduler, I shared details about the rapid onset of symptoms. The response; the earliest availability was nearly two months later. That wasn’t going to work for me, so I asked if another practice member was available for an earlier appointment. I was booked with another surgeon for later that week.
After arriving for my appointment, I was told I would need to return another day because the CD of the mammogram wasn’t sufficient. They needed a hard copy of my mammogram film. Again, I pushed back and said I had to be seen that day. The conversation continued in the manager’s office. Finally, the surgeon arrived and said, “just looking at your charts and seeing you in person, I think you may have Inflammatory Breast Cancer.“
I was both relieved and shocked. Relieved to be heard and shocked to hear a new term for breast cancer that I had never heard of before.
Looking back, I often wonder if I had not been persistent or experienced additional difficulties, would I be here writing this letter today?
Why Finding Others Like Me is Important
When I was first diagnosed, I didn’t know anyone like me. I felt isolated and alone. I knew that finding other Black women who had survived this rare and aggressive form of cancer would be difficult.
Seeing the IBC statistics with low survival rates inspired me to find others and learn what they knew so I could increase my chances of survival. My first opportunity to meet another IBC survivor came from my child’s middle school dean. In my desire to ensure our children were supported during this challenging time, we intentionally communicated what we were facing. When the school dean heard that I was facing IBC, she immediately offered to connect me with another local survivor.
That local IBC survivor became a mentor and connected me with an online group of almost 1,000 IBC survivors. This connection led me to meet another Black woman who had survived for over ten years.
Since my diagnosis in 2013, I have only met five Black women diagnosed with IBC; two are no longer with us. I know other Black women are facing this disease, and finding long-term survivors like me will give them hope.
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Long-term survivorship is possible: raising awareness about this disease can help other Black women navigate diagnosis and treatment throughout the IBC journey.
The Search Begins
In 2023, I will celebrate my 10th year of surviving IBC, so I’m kicking off this campaign on October 4, 2022, which is IBC Awareness Day, to find 100 Black women survivors of IBC.
I know other Black women out there have gone through what I am going through, and I am determined to find them. No one should go through this disease and not see living proof that long-term survival is possible.
I’m thankful for the support of national organizations that support women of color and those diagnosed with IBC, such as For the Breast of Us and The IBC Network Foundation. I’m confident their support will help me reach this goal and ensure our population gets the support we need.
How You Can Help
Diagnosed at stage III or IV, inflammatory breast cancer is a rare and aggressive disease that disproportionately affects black women. IBC is often misdiagnosed, which can delay treatment and lead to poorer outcomes. My experience with IBC has taught me the importance of finding other women with IBC because what I learned helped to save my life.
October 4, IBC Awareness Day
The search begins to find 100 Black women who have survived IBC. Let’s bring them to the forefront and share their stories to increase hope. Let’s raise awareness about the challenges Black women face as they attempt to rapidly navigate breast cancer care. What we learn can help educate others about this devastating disease and eliminate the disparities this underserved population continues to face.
Are you a Black woman who has a history of Inflammatory Breast Cancer?
Let’s get connected by contacting me at www.KatreceNolen.com/contact and follow me on social media @KatreceNolen.
Want to help spread the word and help me find Black women who have been diagnosed with Inflammatory Breast Cancer, then please share this blog post and use the following hashtags:
#TheQuestfor100
#100BlackIBCSurvivors
#100BlackIBCWomen
