Elaine’s Journey: Battling Stage 1B Triple-Negative Breast Cancer with BRCA1 Mutation

A Family Legacy of Breast Cancer: Understanding Genetic Risk

My story with breast cancer starts long before my own diagnosis. My mom was diagnosed with breast cancer in 1999 at 40 years old. She underwent a lumpectomy with axillary lymph node dissection, chemotherapy, and radiation. In 2008, she was offered genetic testing when it became available and tested positive for the BRCA1 mutation. This prompted my sister and me to get tested as well. I tested positive for the BRCA1 mutation, while my sister tested negative.

Knowledge is Power: Early Genetic Testing and Proactive Measures

Following my positive test result, I was immediately referred to a breast surgeon by the genetic counselor. It was recommended that I have breast imaging every six months along with a CA-125 and pelvic/transvaginal ultrasounds every six months, especially because I had a family member with ovarian cancer. I diligently followed these recommendations, motivated to stay healthy. Working in medical imaging (MRI) also underscored the importance of these tests and left me with little excuse to miss appointments.

Navigating High-Risk Clinics: The Importance of Shared Decision Making

After a few years of managing my diagnosis, I moved and had to change breast surgeons. The first high-risk clinic I attended was very heavy on recommending prophylactic mastectomy and hysterectomy. The second clinic, however, did not push the prophylactic mastectomy as hard. I remained a compliant patient, completing my testing and imaging as required. I felt more involved in shared decision-making with this new team.

Surgical Menopause: A Proactive Step in Cancer Risk Management

In 2018, I decided to have a prophylactic BSO (removal of ovaries and fallopian tubes), leading to surgical menopause and its many side effects. This decision was part of my ongoing effort to manage my cancer risk proactively.

Diagnosis and Treatment: Facing Stage 1B Triple-Negative Breast Cancer

Unfortunately, in November 2021, I had an abnormal mammogram and biopsy, revealing a 4.8mm lesion that turned out to be malignant. I was diagnosed with 1b triple-negative breast cancer, which included invasive mammary and DCIS. Being an established patient, I was quickly put on the cancellation list for surgery. Diagnosed on December 1, by December 16, I was preparing for a bilateral mastectomy and sentinel node biopsy with a planned DIEP flap reconstruction. Fortunately, since there was no node involvement, I could have reconstruction immediately.

Chemotherapy and Cold Capping: Managing Treatment Side Effects

Recovery from this extensive surgery was challenging with some delayed wound healing. Preparing for chemotherapy and managing its side effects was another hurdle. I underwent four rounds of Taxotere and Cytoxan, a decision made collaboratively with my cancer care team. I decided to use cold capping (Paxman) to try to preserve my naturally curly hair, a significant part of my identity. Although I lost a lot of hair, the cold cap process helped me feel more ‘normal’ during chemo by allowing me to hide bald spots and thinning areas.

Long-Term Effects and Support: The Challenges of Survivorship

While chemo itself was relatively smooth, the long-term effects have been more impactful for me. Cancer survivors need more information, guidance, and support regarding post-treatment side effects, both surgical and systemic, that seem to linger. During treatment, the oncology nursing team’s recommendations helped manage side effects. However, post-treatment challenges like weight gain, sexual side effects, and the constant worry of recurrence are significant struggles.

Fortunately, several support groups, patient advocacy groups, and websites (like Learn Look Locate) provide valuable information and solutions for survivors. This support allows us to communicate our needs more openly and honestly with physicians.

Gratitude for Advancements: How Technology Shapes Breast Cancer Care

I feel fortunate to live in a time of ever-changing and evolving technology that improves patient lives during and after treatment. Both my mom and I are triple-negative breast cancer survivors, and I am grateful for the early genetic testing that allowed us to take control of our health and future. Without this information, my story and outcomes could have been very different.

Hope for the Future: Accessible Technology for All Cancer Patients

My hope is that one day, the technology that improves the lives of cancer patients during treatment will be accessible to all patients. Improved technology in survivorship should help us live our best possible life after cancer treatment, without the worry of financial stress.

Learn Look Locate: Supporting BRCA1-Positive Breast Cancer Survivors

At Learn Look Locate, we are deeply inspired by Elaine’s journey as a BRCA1-positive breast cancer survivor. Her story highlights the critical importance of genetic testing, proactive health management, and staying informed about the latest advancements in breast cancer care. We are honored to provide a platform where survivors like Elaine can share their experiences, offering hope and guidance to others facing similar challenges. Through our comprehensive resources, including survivor stories, expert insights, and up-to-date information on genetic testing and treatment options, we strive to empower individuals at every stage of their breast cancer journey. Learn Look Locate stands with Elaine and all those who demonstrate remarkable courage in the face of breast cancer, celebrating their strength and fostering a community of support, education, and hope.