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A Breast Cancer Diagnosis and Stumbling into Advocacy in Nigeria

October 2022 Vol 8 No 5
Ngozi Ejedimu
Lagos, Nigeria

I live in Nigeria, and telling my story in CONQUER magazine may serve as a learning experience, because it is good to compare healthcare systems in different countries.

In October 2016, at age 39, I found a lump on my right breast. The thought of cancer never occurred to me: I only noticed the lump because it was something new that I had never noticed before, which made me think it was abnormal.

I had a benign lump removed at age 19, but I was never told about breast cancer or breast self-exams. Is it a coincidence that this lump appeared in the same breast, 20 years later? I am still curious about that.

How News Is Delivered

I went to see a doctor, and after he examined my breast, he said that “they would cut my breast off.” I always remember what he said, because how things are explained to patients is an important part of advocacy, especially for women in my country. The way the news about a breast cancer diagnosis is delivered can make a significant difference to the patient, because such news will send some women in Nigeria running away, never to come back to the hospital for treatment.

I remember waiting for 10 days to get my biopsy results—it was the longest 10 days of my life. I kept thinking of death, because I didn’t remember ever hearing anything good about breast cancer. In my country, no one spoke about it in a positive way; it was normally discussed in whispers, or we would only hear the news about a death.

In 2016, there were no pictures of Nigerian breast cancer survivors online, which is another reason I started sharing my personal journey and showing my mastectomy scar. It wasn’t planned; my main concern after my diagnosis was that I had unfinished business on earth and I had to have a serious conversation with God, because I wasn’t ready to go yet.

I was not told to have a mammogram even after I had the biopsy. The reason was that based on the Nigerian mammogram guidelines, only women above age 40 are supposed to have that procedure. In Nigeria, they don’t do a mammogram for women under age 40. I should have had a mammogram, because breast cancer was suspected.

Today, I find it odd that they would follow the guidelines even when it is likely that the woman has breast cancer.

I ended up going to India for my surgery and treatment, because my family and I didn’t want to have any issues with our healthcare system. Sadly, 6 years later, not much has changed in our healthcare.

Treatment Costs

I was diagnosed with stage III triple-negative breast cancer and had a mastectomy of the right breast. Because the cancer had spread to my lymph nodes, the doctors removed all the lymph nodes under my right arm. I did my research, which is important at every stage of the journey, including research about costs, especially when you are paying out of pocket.

After surgery, it wasn’t cost-effective for me to stay in India for the duration of my treatment, so we called home to find out the cost of drugs there. The difference was significant, so I came back to Nigeria, with some of my drugs in a cooler. I started my first chemotherapy in India in December 2016, and finished it in Nigeria in April 2017.

I am thankful for my community of family and friends, who prayed for me and helped me with funds for my treatment. Many patients with cancer only consider the cost of treatment as surgery and medications, without the added costs of travel, food, transportation, radiation, and time missed from work.

Additional costs may include breast reconstruction, an implant, a mastectomy bra, or prosthesis in Nigeria. Women in Nigeria seem wired to focus only on treatment and surgery, so weeks after surgery and healing many are without a prothesis or a bra, and services for these items are not readily available at the hospitals where surgery is done, which is what should happen.

Advocacy

As a lawyer, I am trained to do research; it is amazing that I am now using those skills for breast cancer advocacy.

I manage @whatcancernaija on Instagram, and I started The Judah Foundation for Breast Cancer (www.thejudahfoundationforbreastcancer.org) in 2018. We provide aftercare support for women. I love what I do, because I have come to realize that getting the right information and resources is a major problem for many patients.

My personal experience with breast cancer has made it possible for me to cover most issues or topics related to breast cancer to help women. I use storytelling as a way to deliver messages, and use art to make the stories relatable to Nigerian women, as well as black women in general.

Burnout Is Real

I have a sense of urgency in ensuring that women are aware of breast cancer and in promoting health literacy, but in an attempt to do too much, we may begin to get stressed that we are not doing enough, which can lead to burnout.

Life has not been easy for me. As a cancer survivor, I have had to deal with issues such as fear and anxiety until I was able to get to a good place, and had the financial burden of having to pay out of pocket for follow-up care.

My goal is to get the discussion of breast cancer beyond the realm of death, treatment, and surgery, because that is not what it is all about. Rather, it’s about thriving and making the best out of life with the moments you have, whether short or long.

Did I mention that stage IV is hardly discussed in Nigeria? Advocacy is a lot of work; there is so much ground to be covered in Nigeria.

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