The worry factor in breast cancer treatment: When the concerns are more than medical
8 min. read
By: Patrice Exantus
My name is Patrice Exantus, and I'm 42 years old. Currently I’m going through a divorce, which is a difficult transition after 15 years of marriage. My ex-husband and I share three children: Sheldon, aged 24; Isaac, aged 13; and Janiya, the youngest at 12. The newest addition to our family is my 7-month-old grandson, Oliver. My family and I relocated to Buford, Georgia, from Fort Lauderdale, Florida, three years ago after I separated from my husband. I've been trying my best to navigate my new normal of singlehood while raising my children and simultaneously working a full-time job and growing my event planning business.
Prior to being diagnosed, I had sold enough furniture that I established a pipeline of earned income with scheduled deliveries to see me through some monthly expenses. Also, I had a little saved up for a rainy day. However, I did not anticipate the approaching hurricane which would severely impact me physically and financially.
I try my best to work out at least three times per week, and it was after a workout session that I felt a sharp pain in my left breast. I proceeded to self-check myself to see where the pain was coming from. That's when I discovered the lump. At first, I thought I had pulled a muscle during my workout. But the pain persisted, and the lump remained even after weeks of self-massage. My mother felt the area, and she insisted that I see my primary right away.
During my visit with my primary doctor, she examined the lump and sent a referral for me to be evaluated. Two biopsies later, I learned the news: I had breast cancer. It was May 19, 2022. At 42 years of age, I wondered: How could this be possible? What was going to happen to me? To my body? Then I thought about my children. How might this affect them? After taking some deep breaths and allowing the tears to roll down my cheeks, I understood I had some decisions to make. The truth was the truth, and I had to face my reality and deal with the matter at hand.
I was given several names of surgeons to meet and discuss the next steps of action, but I shared with my doctor that I felt it was important to be under the care of a Black doctor. I was motivated partly by fear. I had some concerns with all the discrimination and racial uproar lately, and I wanted to feel confident I would be safe. In addition, I wanted a doctor who might better understand my genetic makeup and may feel more incentive to care for a Black woman. My healthcare team was extremely supportive of my needs, and I went on to have two Black female doctors on my oncology team.
After more tests, I was diagnosed with ductal carcinoma in situ (DCIS.) Thank goodness I found it early. Additional genetic testing was done to get better clarification of my medical history. I felt confident and relieved after I understood the nature of my cancer. My new doctors were very informative, but they were also very gentle and reassuring. They held my hands, looked me in the eyes, and consoled me. I felt as if I was meeting caring family members who would make the pain go away.
I worked until one day prior to my surgery, which was scheduled for August 22, 2022. Though I had health insurance, I didn’t have short-term disability. I had minimal financial support from my children's father. I stopped working, but my monthly bills were fixed, and my hospital bills kept increasing. I wasn’t aware of any local support offered for women diagnosed with breast cancer.
I was out of work for two months. After my surgery I spent most of my time downstairs on my sofa recuperating. My children were awesome and tried their best to help me with the cleaning. They had their schoolwork and practices, and they did the best they could. My eldest child lives about 30 minutes from me, and he works full-time, so he couldn’t provide the kind of assistance I needed. I couldn’t cook, and I really needed some help ordering out. It was difficult for me to drive and get the kids to school for their early-morning intramural programs, but at least their school was only 10 minutes away. A short distance I could manage. A few times my sister and a friend helped me; mostly, I had to rely on Uber to get to my doctors’ appointments and anywhere else.
My savings account depleted, and I accumulated a significant financial burden before I received some help and support.
A representative from my insurance company reached out and checked in on me. During our conversation, I expressed the financial difficulties and challenges I was experiencing, and they referred me to Living Beyond Breast Cancer, Susan G. Komen, The Pink Fund, and The American Cancer Society. I also reached out to my nurse navigator who helped me with an application for financial assistance from the hospital.
"Though I wished I would have asked more questions and gotten the help I needed after my surgery, today it’s important to me to help others learn about the resources available, because I don't want what I experienced to happen to anyone else."
After my surgery, any assistance with groceries, cleaning services, utilities, and rent would have been so helpful. With some assistance, some of the pressure would have eased, and I would have felt better mentally and physically. The worry factor I experienced was twofold: in addition to financial anxiety, I worried about how to figure out all the aspects of regular life with kids. I didn’t want to take pain medication until it was severe because I needed to stay on top of things for the kids. Reading the Scriptures kept me grounded, but I wish I could have breathed a little. Maybe I could have slept better then too. Physically, I’m sure that my healing was slowed down by all the stress and activity I had to maintain. I have nerve damage and pain now, and even my physical therapist has noted my recovery seems delayed.
I'm currently going through radiation and lymphatic massage therapy. Since my surgery, I've signed up to be an advocate and volunteer at Breast Health Matters (BHM) to help spread information and resources to women of color in disenfranchised neighborhoods. I've attended their events and learned so much. I'm happy to have met Tiah Tomlin, the BHM’s CEO. My goal is to help prepare our sisters on this journey about what to expect and how to navigate breast cancer once they've been diagnosed. I’m motivated to share what I’ve learned about available resources, and to offer any encouragement and support through this challenging and difficult journey.
In conclusion, I want everyone to know that medical advancements have come a long way and that healthcare professionals have a lot more resources to help us fight our battle with breast cancer. Please know that I'm in this fight with you all, and I'm in it for the long haul.
Posted in: Emotional/Mental Health, In Treatment, Just Diagnosed, Survivorship