Breast Cancer + Blackness: Education as Armor and Advocacy
Awareness is everything. I also believe that awareness is a relative of love.
LUMPS + BUMPS
When I was about 13 years old, around the time I was developing breasts, I was convinced that I had breast cancer. I don’t know if it was because I had learned about it in school, paid attention to Linda Ellerbee (the Nick News Journalist who was diagnosed with breast cancer in the mid-90s), or watched my mother self examine. All I know is I felt a lump on my chest and I was scared. My mother, a career educator and teacher, assured me that I was coming of age and had nothing to worry about. Education brings awareness.
Twenty-two years later, I found another lump on my right breast. It appeared to come out of nowhere—it literally appeared overnight. I had just had an ultrasound which revealed three fibroid cysts on my ovaries and I wondered if this might be related. My mother said to make a doctor’s appointment and again assured me and told me not to worry. She explained that she has lumpy breasts, it was probably fluid, and that she gets them too. She encouraged me to get a mammogram. I appreciated her sense of optimism, especially given that her younger sister died of breast cancer. With education as my armor, I felt prepared to ask questions and advocate for myself. I made an appointment (several), and it turns out that I had three cysts—all fluid. No breast cancer.
I felt relieved and lucky.
ONE IN EIGHT
When the question is asked: “Who here in the room has been affected by breast cancer?” I raise my hand. I think of my aunt. I didn’t spend a lot of time with my mother’s sister, and I can’t say that I knew her very well. What I do know is that her untimely death had an impact on me.
According to the National Cancer Institute, there is a one in eight chance of a woman being diagnosed with breast cancer in her lifetime. One in eight. When I hear this, I think of the women close to me—my sisters, my mother, and her sisters. That makes six. I think of my father’s sisters, my friends, their sisters and mothers. That number is infinite. This is something that impacts us all.
In a time where more and more people are fighting for the equal rights of all underrepresented people, it is important to evaluate what equity means for me as a woman of color, particularly in the spaces of health, wellness, and self-care.
This year, after having physical health concerns of my own, I was forced to take a look at how standard of care might differ depending on who you are, where you are, and what you look like. And while I feel and know my perspective is from a place of privilege (and thankfully in good health), what I discovered about breast cancer and blackness surprised me.
And I wonder if things might have been different for my aunt if she was not a woman of color.
WHAT IS BREAST CANCER?
The most loving thing we can do is share what we know to raise awareness and education.
Breast cancer is a disease where breast tissue cells grow uncontrollably, rapidly, and abnormally. After skin cancer, it is the most common cancer in American women. In black women, it is the second most common cancer, preceded by lung cancer.
It’s also important to know that men can also get breast cancer, but those cases are rare.
BREAST CANCER STATS + FACTS
In 2017, about 252,710 new cases of invasive breast cancer were diagnosed in women. Right now there are over 3.1 million breast cancer survivors in the United States, and this number is always increasing. This number also includes women who are still being treated for cancer as well as women who have completed their treatment. While the survival rates continue to increase (due to improved treatments and a rise to screenings that find cancer earlier and therefore at a time where cancers are most treatable), there is still room for improvement in terms of diagnosis, treatment, and education. Education is as much armor as it is advocacy.
SYMPTOMS + SIGNS
The most common symptoms of breast cancer include:
- Feeling a lump in the breast area, with or without pain
- Change in breast shape or size
- Dimple or puckering in breast
- A nipple turning inward into the breast
- Nipple discharge other than breast milk, especially if it is bloody
- Scaly, red, darkened or swollen skin in the breast area
- Itchy, scaly sore or rash on the nipple
- Dimple, pitted appearance or feel (similar to an orange peel) in the breast area
- Swollen or enlarged lymph nodes around the breast area, including the collarbone and armpits
[National Cancer Institute and American Cancer Society]
Factors that can elevate risk for breast cancer include but are certainly not limited to:
- A personal or family history of breast cancer, including ductal carcinoma in situ (DCIS) and lobular carcinoma in situ (LCIS)
- Inherited genetic predispositions, most commonly with BRCA1 or BRCA2 gene mutations
- Elevated lifetime estrogen exposure, including:
- Early onset of menstruation (before age 11)
- Late onset of menopause (after the age of 55)
- Older age of first childbirth (after age of 30) or never having given birth
- Taking estrogen and progesterone after menopause
- Having dense breast tissue
- Prior radiation therapy to the chest area
- Consuming alcohol, especially in excess of two drinks a day
- Age: Two-third of invasive breast cancers are found in women 55 or older
- Race and ethnicity: Caucasian women are more likely to be diagnosed with breast cancer, but African-American women are more likely to die from this disease. African-American women are also more likely to be diagnosed at a younger age (under 45)
[National Cancer Institute and American Cancer Society]
SURVIVAL + BLACKNESS
That last stat makes my heart hurt when I think about the medical standard for screening. Previously, the recommended annual mammogram screening for women at average risk use was at age 40, but in October 2015, the American Cancer Society (ACS) issued new recommendations that moved in the direction of those of the medical experts. They now recommend that women at average risk of breast cancer start mammography at age 45 and continue with annual mammograms from ages 45–54, and then every other year after that. It is possible that these changes were made overlooking the data that shows that black women are likely to be diagnosed younger than the mammography screening age. The sooner breast cancer is found, the sooner treatment can begin. And of course, an early diagnosis could happen if women (particularly WOC) were getting mammograms sooner.
There are several recorded factors that might explain the difference in breast cancer survival rates between black women and white women.lAmong black women, there tend to be later stage at diagnosis, lower frequency of and longer intervals between mammograms, and lack of timely follow-up of abnormal results Unequal access to prompt, high-quality treatment and care among black women compared to white women is also a major factor.
As of 2014, black women are 43 percent more likely than white women to die from breast cancer. That’s a significant increase compared to 1990, when black women were 17 percent more likely than white women to die from breast cancer . The overall 5-year survival rate for women diagnosed with breast cancer in 2005-2011 was 80 percent for black women compared to 91 percent for white women.
Know Your Own Breasts and Body
I was 46 when I was diagnosed for the first time. I have actually had breast cancer twice in my life, I spent 17 years in remission. I discovered it myself—I found a lump. Seventeen years later I went to the doctor thinking I had a cyst. I had problems with cysts before cancer and they all had to be lanced. The doctor said to be sure, I want you to get a mammogram and from there we discovered that I had cancer again. —Beverly J.
I am inspired by Beverly’s story for many reasons. Beverly is my mother’s childhood friend. She discovered her cancer herself and had the resources to advocate for her health as well as to seek adequate care. In addition to her treatment process, Beverly maintained a positive outlook. She sought support in her community during her treatment and she is very open to sharing her story. She doesn’t take her health, her life, or her relationships for granted.
When I asked her what she felt was the most important aspect of her journey, she shared that advocacy and health awareness were key. Know your own breasts and body. If you see or feel any changes in your breasts—like lumps or pain—talk to your doctor right away. But the thing that moves me the most is that through all of this, she has “learned to love more.”
As a wellness practitioner and a woman of color, I’ve always taken a closer look at health and minorities—sort of as a way of looking out for myself and the women in my family. Given my field of study (neuroscience, mindfulness, holistic wellness) and what I have struggled with personally, I pay close attention to what resources are available, how “wellness” is marketed (and to whom), and what access looks like. While we may not be able to predict the future, or even know what sort of health challenges we may face along the way, it feels important to do what we can to educate ourselves and those around us to make health and wellness more equitable for all.
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Author Bio Nkechi Deanna Njaka, MSc. is the founder of the creative agency NDN Integrated Lifestyle Studio as well as the co-founder of Sitting Matters, a mindful + creative lifestyle brand. She is also a meditation teacher and a 2017-2018 YBCA Artist Fellow. Nkechi majored in neuroscience and dance at Scripps College and went on to complete an MSc in Neuroscience at the University of Edinburgh. With a background in neuroscience and dance, she has spent the majority of her life investigating the relationship between the brain and the body and has always felt the significance of their integration. For several years, Nkechi worked as a neuroscientist as well as a professional modern dancer and choreographer. Through this work, she discovered that mindfulness and creativity are crucial for sustaining individual and global wellbeing. When not exploring mindfulness and other wellness practices, Nkechi spends her time discovering ways to participate more fully in the arts and travel. She currently lives in SF. You can find her here: IG: @ndnlifestylist.