Young Women Can and Do Get Breast Cancer
Desiree’s story Age at Diagnosis: 38 & 47
It’s said that you should seize opportunity; an opportunity I had was actually life saving! The investment house where I worked offered on-site mammography. I utilized the service years before age 40. In 2001, I received a call that additional films were needed. I was given an appointment for the next day and advised to speak with the radiologist. The radiologist showed me both past and present films and explained that my calcifications had changed. This was a red flag. He strongly suggested that I have a biopsy immediately.
Since I had no idea where to go, I asked for a referral. He agreed, and, within two weeks, I had a biopsy. After the biopsy, follow-up was discussed, and I opted for a phone call. A few days later, the doctor called and delivered the news “you have breast cancer.” I was surprised, since I was under the impression breast cancer was an older woman’s disease. I was only 38. I knew nothing about breast cancer.
I began researching the disease, my treatment options and the road that lay ahead for this new world I had just entered. I wanted to ask the right questions, self-advocate and form a partnership with my healthcare team. It was so important to me to have a voice in my treatment decisions. I asked for a referral. An appointment for a breast surgeon consultation was made. A lumpectomy was recommended, and I agreed. A second lumpectomy was needed because clear margins weren't achieved, which is the surgeon’s goal. The pathology report confirmed stage 1 invasive breast cancer. The other characteristics were estrogen (ER) and progesterone (PR) positive and Her2 negative.
My adjuvant therapy was a hormone therapy, which put me into early menopause, and radiation. While focusing on my journey, I was concerned about how my diagnosis would affect my children and family. My daughter , Shayna, who was 16, had finished high school. She recently left to study abroad with a host family in Panama. This was her chance to experience another country, learn about her heritage, become fluent in Spanish and mature a little more before going away to college. I didn’t want anything to derail this … not even my breast cancer diagnosis. I pondered whether to tell her and have her want to return home or wait 10 months. After much deliberation, I chose to wait, although it would leave my 9-year-old son, Khalil, without his sibling to help him cope.
Ironically, while I was trying to keep my daughter from coming back home due to my diagnosis, her host father had a throat cancer recurrence. The host family dealt with the impact of the diagnosis and whether they could keep my daughter. I’m truly thankful they allowed her to stay with them since there was mutual admiration. Isn’t it interesting how she still experienced the effects cancer has on a family?
When Shayna returned home, I told her about my breast cancer. She wasn’t mad at me for keeping it from her. She was sad she wasn’t able to show her support. Thus, she decided to spend her freshman year of college in New York City.
Following my diagnosis, I decided I wanted to share my experience and put a face to the disease, especially in the African American community, since the mortality rate is higher. I also wanted to dispel the myth that it was an older woman’s disease. I began volunteering with the Witness Project of Harlem (WPH), a faith-based breast and cervical cancer education program for African Americans. I later joined Survivors in Spirit (SIS), a faith-based program to educate African American breast cancer survivors about the surveillance guidelines for post-treatment breast cancer from American Society of Clinical Oncology (ASCO).
At 47, I had a recurrence, and my personal circumstances were very different. I was not working and utilizing COBRA to keep my health insurance coverage. I was separated from my husband. My son was a high school senior and planning to go away to college. My daughter was going to start a Master’s program. This time, I had a lump. It was a Saturday morning, I was in the bathroom and a voice told me to check my breast. I was 8 1/2 years away from my initial diagnosis, so I wasn’t even thinking cancer. Although I’d done a breast self-exam (BSE) about two weeks earlier, I did another one and felt a bump. I was rattled because my spirit told me the cancer had returned. I took a deep breath, regrouped and sent an email to my breast surgeon.
I anxiously waited to hear from my doctor. She called Monday morning and tried to assure me that there wasn’t anything to be alarmed about. She told me to come in the next morning. I hoped she was right since my mammogram 6 ½ months earlier was negative. During my examination, when my surgeon reached the lump her face changed. She said, “I’m ordering another mammogram plus an ultrasound,” and sent me for testing.
After those tests, a doctor was found to do a biopsy, and I was told the lump was suspicious. However, we needed to wait for the pathology report. A few days later, I heard those words again: “You have breast cancer.” My breast surgeon suggested I see a plastic surgeon since a mastectomy was the only option this time. I asked for a referral.
I researched what my treatment options were. I also wondered how I was going to proceed with this next challenge life had thrown at me. Equally disconcerting was how I would share the news with my family and friends. I knew I had resources and that my family and friends would rally around me. I also knew I needed to strap in because it was going to be a different experience. I choose to have a bi-lateral mastectomy with reconstruction. After reviewing my pathology report, I did chemotherapy, targeted therapy and hormone therapy. My recurrence was invasive breast cancer, stage 2A , estrogen (ER) positive progesterone (PR) negative and Her2 positive.
My children were very sensitive regarding the recurrence. Since Shayna’s study abroad, she returned to Panama to visit with her host Dad when he was gravely ill. Sadly, he lost his battle. My new diagnosis left her feeling like she had already lost a parent and frightened that she might lose me too. Khalil was trying to enjoy his senior year and plan for college but wondering if I would see those milestones.
As if unemployment and upcoming school bills for Khalil wasn’t enough, the idea of medical expenses was daunting. Shayna discussed delaying graduate school, and Khalil thought about staying home for college. I was resolved they would chase their educational dreams and my recurrence should not change that. My son chose to go away to college, and my daughter began graduate school, while continuing to work full time.
The journey has not been easy. Today, I am thankful for each day in spite of the continuous hurdles. I try to live in the moment. I am truly grateful for all of the love, support and resources that I have received and continue to get from family, friends and fellow survivors. I continue to volunteer with WPH, SIS and started to work with SHARE and YSC too. Raising awareness that younger women can get breast cancer is very important to me. I am a member of the National Breast Cancer Coalition (NBCC) and a Project LEAD graduate. I am committed to staying connected to my community and strive to help African American women know that it is important to take an active and educated role in their personal health care.