Breast cancer survivor takes a bold stand, paves path for new sensation-sparing surgery

When entrepreneur and accessories designer Suzette Bussey, 43, chose her theme Be Bold for the year, she had no idea just how much that would play out in her life.

As she prepared in 2019 for her annual trip to Africa, the inspiration for the iconic designs and materials used by her company, Norton and Hodges, she was going to skip her mammogram to save time. She had a lump in one breast that she could feel but attributed it to having a certain type of fibrous tissue that’s normal in dense breasts and that can make screenings more difficult.

Bussey decided to get the mammogram anyway and was surprised after she arrived in Africa to have an email requesting that she return home for a more in-depth screening. She wasn’t worried, as she had only had one family member, her grandmother, who’d had breast cancer, and she often had lumps, given her type of breast tissue.

She was shocked in August when she returned for more screenings and found out she had breast cancer. “It was never something I expected to hear. I thought, ‘I’m going to die. I’m going to die,’” she said, recounting how she went home and just cried, with all the worst scenarios rolling through her mind.

The next step was a day of appointments at MUSC Hollings Cancer Center, where she met with various specialists to find out her options and the best treatment plan. Bussey found out that not only did she have the BRCA1 gene mutation but that she also had triple negative breast cancer. Neither was good news.

“It was the worst-case scenario all the way around in my mind.”

The good news was that the cancer seemed not to have spread, and her doctors, including oncologist Young Lee, M.D., surgical oncologist Mark Lockett, M.D., reconstructive surgeon Kevin Delaney, M.D., and her gynecologist, Gweneth Lazenby, M.D., developed a treatment plan for her.

Bussey said it was like running a gauntlet, but it was necessary, given how complex her care would be. “I felt incredibly listened to by the whole team. They let me ask all the questions I had, and they let me cry.”

Bold move

Bussey learned she was facing weeks of chemotherapy and then several surgeries to treat her stage 2 breast cancer. She reached out to her network of friends and family and gathered strength and courage. She decided to focus on the work of her company, as she feels passionate about its goal to create sustainable fashion while providing employment opportunities and economic independence for women.

“I decided to live my life,” she said. She also learned more about what living out the phrase “Be Bold” meant in a deeply personal way. Originally, the theme meant to strive to live in an authentic way, ignoring pressures to conform to society’s view of being a woman, she recalled.

“My designs are created to make a woman be seen or feel special and feel beautiful or just accentuate their beauty. And so, it just felt like the appropriate theme, as I’ve always talked about being bold,” she said. “I'm going to Africa and working with these incredible artists and a lot of female artisans. And they're being bold because they're not supposed to be working or they're not supposed to be in business.”

With her cancer diagnosis, though, the theme deepened. It challenged her to have faith in herself, that she could get through the treatment and have the courage she needed not just to survive but also thrive, despite the fear she felt. “I realized I had to be bold to believe that I will be cancer free, and I could get through all of these things.”

 

One of the chemotherapy treatments Bussey had to receive was doxorubicin, commonly known as Doxil or the red devil. The side effects can be severe. Bussey braced herself for the hair loss, fatigue and nausea. One of the oddest times for cancer patients is the first time in the infusion suite, when the strong medications are delivered for hours, she recalled. Her friend, a blood cancer survivor, advised her to visualize something to help to make the experience more bearable.

A mythical figure came to mind as she settled into the chair for the five-hour infusion. An avid hunter, Bussey learned to hunt from her father while growing up in her native Pennsylvania. “I pictured Diana, the goddess of the hunt, going in with her arrows and shooting, like she was coming with the red devil and shooting the cancer with her arrows.”

During this time, she learned she had been selected to present her designs in February 2020 at The One to Watch Runway show by Flying Solo, at New York Fashion Week, and her Hollings team worked with her to finish chemotherapy so she could make the trip. She rang the bell, signaling the end of her chemotherapy treatment, the day before she was to leave. Bussey said she was very tired but grateful to her team for supporting her so she could make the trip.

“I didn't anticipate being selected because I use exotic skins and my designs are a little different. But it was fantastic. The way they paired my designs with other really cool emerging designers was really fulfilling for me.”

When she learned they expected her to go out on the runway at the end of the show, she freaked out. She had spent two days having a blast in the total mayhem that goes on backstage to prepare for the show, with beautiful models being paired with various accessories and designs. She hadn’t thought about having to go on the runway, and she was battling the raging furnace she felt inside, a lingering side effect from her chemotherapy. No one knew about the internal battle raging in her body because she didn’t want cancer to steal the show. No one knew the thoughts swirling around in her head. “I was like, ‘Who am I’ and ‘What am I doing here?’”

Instead she made a bold move. She donned her suede skirt, white shirt and a custom warthog necklace, and she topped it off with a feather-adorned hat. Then she walked out as if she were an old pro.

Fierce advocate

When Bussey returned home, she scrolled through the news feed on her phone at 3 a.m. and ran across a story about a woman who was able to preserve breast sensation following reconstruction from a mastectomy. She was facing a mastectomy and oophorectomy, a procedure to remove her ovaries, given her BRCA1 mutation. The article featured San Francisco surgeon, Anne Peled, M.D., who had been doing an innovative procedure to spare the nipples and retain sensation for women having reconstructive surgery after breast cancer.

Excited, she contacted her doctors, Lockett and Delaney. They weren’t doing the procedure at the time, and with COVID-19 and insurance restrictions, it would be hard for her to go to San Francisco. She made the pitch to Delaney to see if he’d check it out.

Delaney, a plastic surgeon, knew Peled from another conference he attended, so he checked out the research. “I called her up and said, ‘Hey, is this real? What are you doing, and how are you doing it?’”

 

After much discussion, Delaney decided he was willing to do it if Bussey wanted it. “I told her straight up. ‘So, I've never done this. I work with nerves all the time, but I’ve never done this particular surgery.’”

Bussey said she trusted him, given his reputation and the excellent care she had received. “I had to push for what I wanted, and I really had to advocate for what I wanted. I realized if I was going to survive, then I wanted my quality of life to be as close to normal as possible. That was very important to me. I felt they listened to me, and we had several conversations. In the end, they were willing to do it because it wasn't going to affect the health outcomes.”

Her treatment had to be done in stages. First, Lockett scheduled a lumpectomy to remove the cancer. Her doctors agreed to do a lift and a reduction at the same time to preserve her nipples. Because she responded well to her rounds of chemotherapy, her doctors found that she had had a complete pathologic response, which means there were no active cancer cells growing anywhere.

Then Bussey prepared for the double mastectomy she would need because of the BRCA1 mutation, and Lockett and Delaney prepared to do the new procedure. The doctors worked in tandem, with Delaney handling the nerve grafting and placing tissue expanders for a later surgery to insert implants.

Delaney said the procedure went well, and he appreciated that she advocated for her cause. He wouldn’t have agreed if he thought it would affect her cancer outcome.

It will take a year for Bussey to know how much sensation will return. She is pleased with preliminary results and admits it was awkward to discuss with two male physicians why breast sensation and her quality of life as a cancer survivor was so important. “I told them how important it was to me and how I wanted to be able to feel a hug and to feel like a woman. They were willing to take into account quality-of-life issues. For them to consider this in the treatment plan was incredible.”

She’s grateful to all of her doctors and wants to get the message out to women to be bold about their health care. She’s thrilled to know that another patient already has had the new procedure, and that MUSC is in the lead in providing this on the East Coast for eligible patients because of her advocacy.

She’s now on a mission to encourage screenings as an early diagnosis because they can make all the difference in surviving and in having the option for some of these treatments.

“I want to know how many women who are wearing pink shirts aren't getting their mammograms. You have to ask your friend, ‘Did you get your mammogram? Are you getting your paps? Are you getting tested for ovarian cancer?’ We have to talk about this,” she said.

Some people avoid screenings or getting a lump checked out because they are afraid of what they may find out, or they are too busy as caretakers. That martyr idea has to change, she said. “You have to put your health first to take care of your family. If something happens, you can deal with it. You know, women are strong enough to deal with so much. We just have to get these screenings. There’s a 90%, five-year survival rate for breast cancer. That's pretty amazing.”

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