I knew the moment my fingers found a lump in my left breast, in 2018, that it was cancer, and I wondered if I was going to die. My maternal grandmother had been diagnosed with breast cancer when she was 39, the same age I was when I discovered the mass in my breast. She died 5 years later.
Divorced and the sole supporter and guardian of my then 15-year-old daughter, I knew that whatever this lump turned out to be, I would do everything I could to survive.
After discovering the mass, I made an appointment with my gynecologist, who after performing a clinical breast exam, immediately ordered a mammogram and ultrasound, which showed a large mass starting to encroach under my left arm. Tissue samples of the mass recovered from a series of MRI-guided breast biopsies determined I had stage III invasive ductal carcinoma, estrogen/progesterone receptor–positive, HER2-negative breast cancer. Although I had expected the diagnosis, it was still terrifying to hear I had such an aggressive, late-stage cancer.
Keneene Lewis, MEd, BSM
Facing Financial Ruin
I had a lumpectomy a week later to remove the mass; because one lymph node was found to be malignant, I had months of chemotherapy, followed by radiation therapy. The cancer and its treatment were so debilitating that I had to quit one of my two jobs. It put me in such financial jeopardy that I feared my daughter and I would become homeless. Adding to my financial distress was the fact that I had a high-deductible insurance plan, which was all I could afford, and it made me liable for most of my medical expenses, including numerous imaging scans, blood tests, and biopsies, and even parking costs at the cancer center, which were mounting rapidly.
As I tried to concentrate on just getting well and maintaining enough energy to work between treatments and caring for my daughter, bill collectors were calling my house, demanding to know when I would clear the more than $40,000 in medical debt I had already accrued, and that was still growing. The coronavirus pandemic at the beginning of 2020 further compounded my precarious financial state, and by April 2020, I had no choice but to file for bankruptcy.
During this time, with the help of a small income from one job I could do from home, gift cards donated by members of my church, and groceries my family sent, I managed to keep a roof over our heads and food on our table. But money is the last thing you should have to worry about when you are dealing with cancer and fighting for your life.
I believe that once you have a cancer diagnosis, out-of-pocket costs for treatment should be eliminated, especially in the first year after a diagnosis, when expenses are so high. Studies have shown that when patients are unable to afford the exorbitant prices for life-saving treatment, they may decline or delay care, and that about a quarter of cancer survivors experience psychological hardship because of financial toxicity.1
Coping With the Long-Term Effects of Cancer
Although I managed to eventually pick up more jobs during the pandemic and reduce my financial debt, I’m still suffering the residual effects of having cancer and declaring bankruptcy. It is more difficult now for me to rent a home, and I can’t apply for a life insurance policy until I can show that I have been cancer-free for 5 years—another year-and-a-half from now.
But reaching that milestone doesn’t mean I’m done with cancer. The side effects of my treatment have left me permanently bald, overweight, and in constant pain. In addition to these physical effects, cancer threw me into emotional upheaval as well. It wasn’t until after I was finished with treatment that I realized I was suffering from depression over what cancer had taken from me.
Being in therapy and becoming involved with For the Breast of Us (www.breastofus.com), an online breast cancer community for women of color, have helped pull me out of my depression. They also have led me to a career I love with Living Beyond Breast Cancer (lbbc.org), a national nonprofit organization providing community support for both men and women with cancer.
I am the Support Services Coordinator for Living Beyond Breast Cancer. In this role, I administer funds from our financial assistance program, which provides one-time grants for basic living expenses, including rent and utility bills. Given my own financial history, being able to help other survivors going through economic difficulty is rewarding and has given me back a sense of purpose.
Raising Awareness on Health-Care Disparities
Because my cancer was diagnosed at a late stage and is aggressive, I don’t know if I am completely out of the woods. After nearly 5 years of having no evidence of disease, I still worry that after one of my biannual imaging scans, I will hear those dreaded words “the cancer is back, and now you are going to die.”
Although I’m grateful I have survived cancer, I remain angry at the disruption the disease has caused in my life and in the disparities that persist in outcomes for Black cancer survivors. The fact remains that Black women still have a 40% higher death rate from breast cancer than White women.2 We need to change this statistic by ensuring that all women have equal access to quality cancer care and an equal shot at surviving breast cancer.
My personal mission now is to raise awareness on the continuing disparities and biases that women of color face after a breast cancer diagnosis and help change that dynamic. I want to lend my voice to those who are unable to speak for themselves and in the process not only improve their lives, but my life as well.
REFERENCES
1. Collado L, Brownell I: The crippling financial toxicity of cancer in the United States. Cancer Biol Ther 20:1301-1303, 2019.
2. Breast Cancer Research Foundation: Black Women and Breast Cancer: Why Disparities Persist and How to End Them. January 25, 2023. Available at www.bcrf.org/blog/black-women-and-breast-cancer-why-disparities-persist-and-how-end-them. Accessed July 20, 2023.
Ms. Lewis is the Support Services Coordinator for Living Beyond Breast Cancer. She lives in Marietta, Georgia.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
