Battling Breast Cancer Around the World: One Woman’s Story
October 23rd, 2019 | Viewpoint
October 23rd, 2019 | Viewpoint
One Saturday morning in 2014, I was walking the streets of Addis Ababa, Ethiopia to raise awareness of breast cancer. Since non-communicable diseases are not a priority in Ethiopia, our group was small, but we were a force: doctors, urban health extension professionals, government officials, and breast cancer survivors, all marching to the Ethiopian National Theatre for a summit sponsored by the JSI-implemented Strengthening Ethiopia’s Urban Health Extension Program.
At the theater, we distributed pamphlets on breast self-exams and invited women to speak about their experiences. Hesitantly, one woman emerged from the crowd and told how she kept her cancer a secret from her friends and family because she was scared of being abandoned. She was lucky to get treatment, but she lost her breast and many aspects of her life. Despite being surrounded by survivors from all over the world, her trembling body betrayed her emotional and physical pain. Although I vowed that day to conduct regular self-exams, I was thankful that I was young and had no risks according to my family history and lifestyle.
Four years later during a self-exam in January 2018, I discovered a pea-sized lump in my left breast. Within 24 hours I had a mammogram and ultrasound in Dakar, Senegal, where I was living. The radiologist informed me that my mammogram was clear and the ultrasound did not show anything suspicious and that I should come back in six months. At first, I was relieved that it wasn’t cancer, but later I had this gnawing feeling that I had breast cancer.
I started digging into the details and reviewed the radiology report, which documented “dense breasts” and a density score of “3 (class C).” I had never heard of dense breasts, so I researched and found that they are a risk factor for breast cancer, which can ‘hide’ behind the dense tissue. Standard mammograms for women with dense breasts are not enough; I needed a 3D mammogram, which is not available in Senegal.
So I called Laura Campbell, a friend and former JSI colleague working at USAID/Senegal, whose mother was a physician and a breast cancer survivor who could help connect me to care in the USA. Within a few weeks, I had an appointment with a radiologist in Boston, who scanned me using 3D technology. A biopsy revealed invasive ductal carcinoma, stage III. Had I waited for six months for a re-evaluation, I would likely be facing metastatic breast cancer.
I was alone when I received the news as my family was in Senegal. It didn’t surprise me but I needed to face the reality of a toxic and long treatment plan that didn’t jive with my organic, adventurous, and healthy lifestyle. I relied heavily on my JSI survivor colleagues for wisdom, information, and a sense of what was about to happen. My family members uprooted their lives to be with me as I looked at death in the eye at the age of 42. Unlike many women, I had the support of my friends, family, work, and good health insurance.
After 5 months of chemo, four surgeries, and 21 proton beams, I should have superpowers, but instead, I have major battle wounds. I know I am lucky, but on days when I felt like a 90-year-old person in a 42-year-old body, I wondered if it was better to die than to put poison into my body that would somehow cure but leave me with just a portion of my old self and half a mama to my children. But when I looked at my children and thought about the thousands of women who do not have access to treatment, I knew that I needed to fight with all my might and surrender to clinical trials so that we can find a cure.
In the United States in 2018, more than 40,000 women died from breast cancer, which is like wiping South Boston off the map permanently. The epidemic affects one in eight American women; incident rates worldwide vary from 19.3 per 100,000 women in Eastern Africa to 89.7 per 100,000 women in Western Europe .
I grapple with fury that there are such disparities globally in terms of diagnosis, access to care, and treatment. We are dying. In my own country, the breast cancer incidence rate is lower in African-American than in Caucasian-American women, yet breast cancer mortality rates are paradoxically higher for African-American women . This alone makes my blood boil and is a call for action.
I think back to that strong Ethiopian woman on stage telling her story, and despite wanting to hide from the world sometimes, I find strength through her.
My work with JSI connected me to the breast cancer community long before my diagnosis and gave me the knowledge that kept me informed each step of the way. The skills that I learned at JSI, including contract management, have come in handy when navigating insurance coverage and defending appeals. JSI’s approach to public health, which is entwined with good governance, empowered me to take action with legislative efforts related to affordable care and medications.
As I travel the road to recovery, my goal is to give back. I coach other women during treatment and help them to navigate the U.S. health system. I am involved with organizations in Senegal and hope to link them to JSI to reduce breast cancer disparities for diverse and vulnerable populations in both the US and Senegal.
I would like to thank JSI for its domestic research with minority communities and the global initiatives that have improved people’s health and the systems that serve them. Most importantly, I acknowledge all of the women and men who joined clinical trials to give others a better chance of survival. For all the women and men who we have lost to breast cancer, may you rest in peace knowing we are getting closer to a cure.
 World Health Organization
 Ries L, Eisner M, Kosary M. SEER Cancer Statistics Review, 1975–2000. Bethesda, MD: National Cancer Institute, 2003.
Written ny Allison Molenda