Making decisions about reconstruction: Siata Swaray
After receiving her master’s degree, Siata Swaray was looking forward to getting work in her field when she was diagnosed with stage I triple-negative breast cancer in December 2016. She was 29 years old.
Siata met with surgeons several times to ask questions about her treatment options. They talked about choosing lumpectomy or mastectomy, and how, with a mastectomy, she could decide to have breast reconstruction, go flat, or wear a breast prosthesis. With mastectomy, Siata was told, she would still be given chemotherapy but would not need radiation treatment.
“My doctors really put me at ease,” says Siata, who lives in Columbia, Maryland. “They gave me more time to think about reconstruction after I made my first decision to have the mastectomy.”
Because she has a small body frame, her plastic and reconstructive surgeon recommended a tissue expander that is filled with saline over several months to stretch her skin. That stretching makes it easier to insert an implant later. Some women are able to have the implant placed during the surgery that removes the breast.
Siata asked her parents for their advice. Her mother leaned towards not doing reconstruction. She cited a close family friend who had a mastectomy when young and had been fine without a rebuilt breast. Siata thinks her mother was worried about extra surgeries she might go through during the reconstruction process. Her father had a different view, saying that she might feel more comfortable if she looked like other young women, with two breasts. “At the end of the day, it was my decision,” she says. She chose to have reconstruction.
She attended support group meetings at her cancer center and found those sessions to be reassuring while she was considering her options. “It was helpful to hear other women’s stories and to know you’re not alone,” Siata says. “My support group helped reaffirm that I had made the right decision for myself.”
Her decision to reconstruct was strengthened when she learned that her tumor was small, only 1.7 centimeters, and didn’t affect the nipple and surrounding skin. That meant the nipple area could be used in reconstructing her breast. “I was really happy that I was eligible for nipple-sparing surgery,” she says.
A complication emerges
After surgery, chemotherapy, and a series of office visits to fill her tissue expander, Siata was anxious to move forward with the next step: removing the expander and putting in a silicone gel implant. But before that could happen, she felt a lump in the area where her breast had been. She talked with one of her nurses and her reconstructive surgeon, who both said it felt like a bone.
“They didn’t think anything of it,” Siata says. “I really had to advocate for myself. I insisted, ‘This doesn’t feel right.’”
An ultrasound and biopsy confirmed her belief. There was another breast cancer tumor, slightly larger than the first, very close to where the previous one had been. Since the date for switching in her breast implant was near, the doctors said they would remove the new tumor at the same time.
Testing showed the new tumor was slightly hormone receptor-positive. The first had been diagnosed as triple-negative breast cancer. The new tumor was also confined to the breast, so the doctors told her it was still stage I.
She received a different chemotherapy medicine for 3 months and the surgery to remove the tumor and place the breast implant happened as planned in October 2017. After she healed fully from that surgery, she had 6 weeks of radiation treatment.
“I was heartbroken” about finding the second tumor, says Siata. “But my general feeling was if this is going to save my life, this is what I need to do.”
Sharing lessons learned
It’s now March 2019 and Siata describes herself as being “halfway through” reconstruction. “The process seems never-ending,” she says.
To correct an indentation in the shape of her treated breast, her doctors plan to fill it with a tissue flap of skin, fat, and muscle from another area of her body. That surgery is scheduled for May 2019.
“We’ll see how that heals,” she says. “If things aren’t proportioned well, for symmetry reasons, they’ll do some final tweaking.”
Siata looks forward to when she’ll be able to wear whatever clothing she wants, such as low-cut shirts. Currently, when she chooses a top, “I have to give much thought about how it will fall on my body,” she says. But she hasn’t felt uncomfortable or self-conscious. “I still view my body as being beautiful.”
From her experiences, Siata offers advice to other women who are considering reconstruction or are somewhere along the road of rebuilding their breasts:
- Be patient. “It’s not a one-day thing or an overnight thing and then you’ll have perfect boobs. It’s going to take time before they look pretty. Take it one day at a time and trust the process.”
- Get answers and don’t rush decision-making. “Ask plenty of questions so that you can make the best informed decision. Do what’s best for you and what you’re comfortable with. Be informed about how treatments can affect the reconstruction process, if that’s the route you decide to take. It may not feel like it, but you have time to make up your mind on what you want to do.”
- Seek out experts. “For better results, I would say, ‘Choose the right team.’ If you have the opportunity, research your doctors and seek skilled breast surgeons who have tons of experience.”
- Continue to do the things you enjoy. “Maintain your friendships. Plan something fun for each day so that you can look forward to the days ahead.”
For her 30th birthday in 2017, Siata organized a fundraising walk and cookout with her friends and family to benefit her cancer center. In 2018, the event proceeds ($5,000) went to the Well Woman Clinic in Freetown, Sierra Leone, where Siata was born and lived until age 10. The funds will help the clinic buy a mammography machine. “There’s only one mammogram machine at the moment, which is not functional,” she says. “This will help with the process of getting a new one.”
The 2019 event will be held on June 15 at Hammond Park in Laurel, Maryland, and benefit LBBC.
This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.