Julie Culpepper faced over a decade of benign breast lumps and regular screenings, believing her breast cancer risk was low. Then, her family history changed after her sister and mother were diagnosed with breast cancer. Julie developed additional pre-cancerous conditions, which forced her to make a decision that led to a challenging road to recovery. This is her story in her own words.
Discovering the First Lump
My family is no stranger to cancer. I lost my grandmother to breast cancer and my grandfather to pancreatic cancer. When I discovered a strange lump in my breast when I was 26, I was petrified, but I knew I needed to act.
Growing up, my mom, a nurse, stressed the importance of breast self-awareness. I made an appointment with my doctor, who recommended a biopsy. Thankfully, my results came back negative for breast cancer, but that first little lump was the beginning of my breast health journey.
A False Sense of Security
Over the next decade, more benign lumps appeared. As awful as the biopsies were, I felt confident that they would always be non-cancerous. Since most of my family history of cancer was on my father’s side, I assumed my risk was relatively low. That all changed when my sister received a breast cancer diagnosis.
My Sister and Mom Face Breast Cancer
She had a lumpectomy and recovered, but the cancer returned. This time, it was more advanced, and treatment included a second lumpectomy followed by chemotherapy and radiation. After facing breast cancer a third time, she opted for a total mastectomy.
Just a year after my sister’s first diagnosis, our mother learned she had breast cancer, as well. Her treatment plan included a unilateral mastectomy of her left breast.
My Family History Changed My Risk
With this new family history came an increased risk of breast cancer. My screenings went from once a year to every six months. My sister, mother and I had genetic testing, which found no inherited gene mutations linked to cancer.
I was 37 when my doctor sat me down after a breast MRI. The MRI detected atypical hyperplasia, a pre-cancerous condition that put me at an even higher risk for breast cancer.
He said, “We’re going to take this out, but we need to think about what your treatment will look like after this.”
It was one of the worst conversations I’ve ever had. I had three options. One was to essentially play Russian roulette and continue to receive regular imaging.
The second was to start tamoxifen for breast cancer risk reduction, and the third – and most invasive – option was to move forward with a total mastectomy, also to reduce my risk of breast cancer.
Why I Decided to Have a Mastectomy
I interviewed several plastic surgeons, and one spent an hour going over the breast cancer risk assessment my breast oncologist completed. My risk of being diagnosed with breast cancer in my lifetime was approximately 90 percent. The average woman’s lifetime risk in the U.S. is about 13 percent. That put things into perspective – I decided to move forward with the mastectomy and simultaneous reconstruction.
A month before my surgery, I went in for a final round of imaging, which uncovered multiple pre-cancerous spots and lobular carcinoma in situ. As if my breast cancer risk wasn’t already high enough – this diagnosis increased it even more.
What I Didn’t Expect After Surgery
I had my mastectomy and reconstruction surgery in December 2020. Due to COVID protocols, I went in for the surgery alone. I woke up alone. I was afraid, but I also felt strange because I wasn’t in any pain. I expected it to be an extremely painful process. I went home, recovered and seemed to be healing.
Then, about seven months after the surgery, I decided to get back into an exercise routine.
After my first workout, I experienced intense pain and redness at my surgery site. It felt like my entire body was on fire. I got so angry at myself for going through with the surgery when there might have been a less invasive option.
I spent a week in the hospital because my body rejected the implants. The skin around the implant was too thin, so my doctor suggested I reduce the size of the implants. Not long after the reduction, the pain began again, and I was back in the hospital on another round of antibiotics.
This time, my doctor was serious. He said, “They have to come out.”
Choosing a Different Path to Breast Reconstruction
We discussed my options. I didn’t want to go flat, and it seemed the best course of action for me was to have a DIEP flap procedure. However, if I wanted my breasts to be the same size as before my surgery – and I did – I would have to gain weight quickly.
Over the next four months, I gained close to 60 pounds and was able to move forward with the surgery. After nine surgeries and multiple hospital stays, I finally felt like my life was returning to normal.
Finding My Voice and Raising Breast Health Awareness
At first, I was hesitant to share my story. But eventually, my colleagues, daughters and husband encouraged me to get involved with Susan G. Komen.
My company, Florida Power & Light, sponsors Komen’s West Palm Beach MORE THAN PINK Walk, and I was asked to speak at a company-wide event.
It was surreal to share my story with so many of my coworkers, but it was an opportunity to encourage advocacy and breast self-awareness. Not long after the event, I learned I had been chosen to represent the company as an ambassador for the Walk.
A New Outlook on Breast Health
This whole experience has changed my outlook when it comes to breast cancer. The number of women I’ve spoken with who hadn’t scheduled their mammogram or hadn’t paid attention to any changes in their breasts surprised me.
I also realized there were women who had grown tired of their own Russian roulette check-ups but were afraid of proactively taking the next step to a mastectomy.
My story gave them at least the courage to learn more and ask the questions needed to take control of their health and own experiences. This journey hasn’t been an easy one, but it’s given me the drive and passion to encourage others to take action in their own breast health.
Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.
