6 minute read
Young scientist empowers women through her BRCA journey
A scientific mind at work A scientific mind at work on behalf of others on behalf of others
By Adam Kivel
As an astrophysicist, Sarafina Nance spends
much of her time studying supernovae and how stellar explosions affect the cosmos.
But in the midst of her PhD program, the Bay Area native experienced a massive shockwave of her own.
“My dad had just been diagnosed with stage four prostate cancer and also came back positive for BRCA2, so I knew I needed to get tested,” she says.
The cancer-causing mutation can be passed down from either parent, and her father’s diagnosis – in addition to her grandmother’s experience with ovarian cancer – spurred Sarafina to get tested as well.
“I learned that I was positive right around my 23rd birthday,” she says.
Prior to her father’s diagnosis, Sarafina was familiar with the concept of genetic screening but was unaware that doctors could test for specific mutations and guide individuals based on their unique background.
“It wasn’t something I was super-familiar with until I had to be familiar with it,” she says.
Two years later, at the first of her normal screenings based on her positive mutation, Sarafina’s MRI raised new concern. Although the resulting core needle-biopsy returned negative, the fear that a positive result seemed inevitable loomed large.
As a scientist, Sarafina’s natural instinct in that moment was to learn from experts and dig through scientific publications for hours on end. She met with an oncologist shortly after her first biopsy experience and learned what her future might entail. It wasn’t a certainty that she would get breast cancer, but the risk was remarkably high, and she would need to go through screenings every six months. At the end of the day, her research-first approach boiled down to statistics as much as it did emotion.
“I knew that I couldn’t keep fearing a positive biopsy for my mental health, and I learned that with preventative surgical options, my risk could fall from 87 percent likely to develop cancer down to 5 percent,” Sarafina says. “I knew I would do anything to decrease my risk, to be proactive and empowered, and to hopefully never have to think about breast cancer ever again.”
The more that Sarafina learned, the more frustrated she grew with the lack of information targeting women and regarding genetic screening and preventative treatments. She knew that major changes needed to be made to ensure that other women wouldn’t need to scour medical journals to understand their options. In addition to medical research, Sarafina dove headfirst into social media and online forums to connect with others having similar experiences. She developed a particularly strong connection with The Breasties, a group dedicated to empowering individuals affected by breast and reproductive cancers.
“The women in that group tend to be young – I could connect with their experiences,” Sarafina explains.
From there, she was connected to ASPS member Anne Peled, MD – a researcher and information sharer after her own heart.
“She had so many educational resources and videos on her website where she just answers questions for 20 minutes,” Sarafina notes.
Shortly thereafter, Sarafina showed up to her first appointment with Dr. Peled with a notebook full of research and questions. The two began simultaneously discussing two major topics: Sarafina’s own surgical options and how she could share information with more women.
“As a young breast cancer survivor myself, I know how difficult it can be to navigate decisions around breast surgery and reconstruction at any age, but particularly in the context of the unique issues facing younger women,” Dr. Peled says. “She was shocked to find out how few patients and medical professionals were talking about the loss of sensation that typically occurs after mastectomy, for example, as well as ways to try to preserve it.”
For many, Sarafina explains, the concept of a preventative mastectomy is a blanket term without any sort of nuance or choice. Some women learn about the procedure and know that it can prevent cancer for those genetically predisposed to it, but they actually know very little about the ins and outs of the procedure.
In late 2019, Sarafina decided to undergo nipplesparing mastectomy with sensation preservation and nerve grafting, and implant reconstruction. Prior to connecting with Dr. Peled, the doctors with whom Sarafina met told her that her only option for surgery was under-the-muscle reconstruction. Dr. Peled not only discussed the option for the over-the-muscle option, which had recently become prominent, she also openly discussed strategies to retain sensation. Other doctors with whom Sarafina spoke never even mentioned that patients lose sensation.
“Sadly, a lot of women don’t get the breadth of options that they should,” Sarafina says. “Being equipped with as much knowledge as I could fit in my brain meant I could advocate for myself. But I want to make sure more surgeons and doctors listen to women and present them with all their options.”
Safafina believes that women frequently feel unheard in their medical experiences, noting that racism and misogyny have a powerful negative effect on patient experiences. Early in her experience, she set her mind toward spreading the knowledge she was able to acquire in an effort to level the playing field.
“I was also super-privileged in that I didn’t have cancer, so I was able to take the time to make these decisions in a way that someone with cancer may not have,” she says. “Those of us with privilege really need to do the work to remove inequities in women’s healthcare so that everybody gets access to resources.”
—Sarafina Nance
Sarafina shares her preventative mastectomy and reconstruction journey to educate and empower others.
Based on her experience, Sarafina decided to assemble a comprehensive “Guide to Breast Surgery” and shared it via her website. She also shared her experience with a variety of publications to further spread knowledge and empower other women.
“Sharing personal details around breast sensation and sense of femininity takes exceptional courage, particularly at such a young age,” Dr. Peled says, “but I have no doubt in my mind that she’s changing women’s lives on a daily basis. Our partnership and friendship has been one of the most wonderful parts of my plastic surgery career – I can’t wait to see the incredible contributions to patient education and awareness that Sarafina will continue to make in the future.”
Sarafina’s strength and belief in changing the lives of others powered her through her own surgery and the process of sharing her story with the world.
“It sounds cliché, but if I reach even one person, I know that it’s worth it,” she says. “When I tested positive for BRCA, I felt so overwhelmed. I was a young 23-year-old, and all I thought about was my boyfriend and school. I wished that I had someone to reach out to and talk to about all of this who knew what it was like. I learned that there are a lot of people out there doing really amazing work, and it feels really powerful to share and make a difference.”
Ready for a consultation? Here’s what you can expect:
During your breast reconstruction consultation, be prepared to discuss: • Your surgical goals • Medical conditions, drug allergies and medical treatments • Current medications, vitamins, herbal supplements, alcohol, tobacco and drug use • Previous surgeries
Your plastic surgeon will also: • Evaluate your general health status and any pre-existing health conditions or risk factors • Examine your breasts and take measurements of their size and shape, skin quality and placement of nipples and areolae • Take photographs • Discuss your options and recommend a course of treatment • Discuss likely outcomes of breast reconstruction and any risks or potential complications
Be sure to ask your plastic surgeon questions. It’s very important to understand all aspects of your breast reconstruction.
