Runi Limary was just 28 years old when she was diagnosed with invasive breast cancer in 2005. At the time, she was a math and science teacher, and had always felt her calling in life was to help others. As a young patient, Runi had difficulty finding other young women going through the experience, and so after her cancer treatments, including chemotherapy, she knew she wanted give back to the community on a completely different level. Two years later, she became a Senior Certified Patient Navigator at the Breast Cancer Resource Centers (BCRC) of Texas, with the aim of supporting and connecting young women and to make them feel less isolated throughout the breast cancer experience.
Runi has spent the past eight years leading the BCRC’s Young Survivor Services, which includes the Pink Ribbon Cowgirls, a networking group for young survivors in Austin, Texas, and Lotus Forum (L4), a support group for younger newly diagnosed and long-term survivors of metastatic breast cancer. When Runi started working with the Pink Ribbon Cowgirls eight years ago, the group consisted of 44 women. Today, the group serves more than 650 women, and is known nationally.
We talked with Runi about her work leading these support groups, working as a patient navigator, and the lessons she’s learned along the way from both a professional and patient perspective. Here Runi offers suggestions for building confidence as a patient, addressing issues young women with breast cancer uniquely face, and emphasizing the importance of support throughout the experience.
“I get to help people every day whether it’s on a small scale or a grand scale, and that’s just the most amazing thing.”
Be your own advocate.
For Runi, this is a lesson she learned going through her own experience as a breast cancer patient. A few months after a routine exam came up negative, Runi found a lump in her own breast, but since she was only 28 years old, her primary care physician didn’t feel as if it was something she needed to be concerned about. She pursued getting a mammogram and ultrasound, but because she had dense breasts and was in good health, again her doctor said she was “probably fine, but if I wanted to go see a surgeon then I could.” By then, the lump had doubled in size in just a few months, and so she decided to have it removed by incisional biopsy, at which point it came up positive for breast cancer. If it wasn’t for Runi continuing to follow-up and advocating for herself, the cancer may have gone undiagnosed for much longer, allowing for the disease to spread further.
Build a medical team you trust.
Runi also emphasizes the importance of self-advocacy when picking a medical team: “It’s a patient’s right to choose who is on their team. If a patient feels as if they’re not being heard or are being rushed out the door by a doctor, it’s ok to get a second opinion or even a third opinion.” Runi also points out that everyone has different personality preferences, just like in dating or making friendships, and that this is an important factor not to be overlooked. Patients and their medical teams spend a lot of time together, so it’s key that people really think about who they connect with and feel they can trust during their treatment. For example, patients should feel comfortable enough with their team to report disruptive symptoms big and small, as well as ask questions, without worrying about “bothering” their doctors.
Arm yourself with information—but from credible sources only.
The more information people have, the better they can feel about the choices that they have. Attending doctor appointments with thoughtful questions and background knowledge can help patients make the most of their time with doctors, but Runi also warns that there’s a fine line between preparation and information overload. Runi notes that some information online can be misleading or overwhelming, which is why she advises talking to a patient navigator first. “Some people will just research and they get so scared. Many then decide that they’re not going to get treatment. If they contact a patient navigator, we can help them. We try to be a patient’s biggest resource, and it all starts with having in-depth conversations. There is a lot to learn and we want to make sure it is done right.”
Support shouldn’t end after treatment.
Many women Runi works with are newly diagnosed with breast cancer, but she also recognizes the need for continued support even after a patient’s treatment has ended. “Everyone expects that person to be who they were prior to their diagnosis and treatment, but they’re different, and are in need of support at this time, too.” An important goal of the groups that Runi runs at BCRC is to create a space where newly-diagnosed and more experienced members, either in long-term treatment or finished with treatment, can share their varied perspectives. “We give them an avenue to come together and I always thank them for coming because while they are getting support for themselves, they are also supporting each other,” she said.
Young women with breast cancer may face unique challenges.
Through her work with networking groups for young survivors, Runi knows that the concerns of women diagnosed at a young age can be very different from women diagnosed in their 60s. For example, younger women may have concerns around fertility after chemotherapy, while other issues that come up may be going back to work or school after treatment. Women discuss how to inform professors and coworkers about their breast cancer, and how to know your limits when it comes to picking classes or taking on work. Runi explained that “there are so many things to juggle in your twenties and thirties, so adding breast cancer to the equation can make it all more difficult.”
Find a safe space and supportive group to address fears.
Runi facilitates the Lotus Forum, a support group for young women who have metastatic breast cancer, which creates a place for members to talk honestly and foster supportive friendships that continue outside of the group. While conversation topics can get heavy, Runi knows that these are issues many women are thinking about and may not have other outlets to discuss. Runi explains: “They talk about what people are going to say at their funeral, and how long they want their partners to grieve for them before they start dating again—no subject is off limits. These are conversations patients shouldn’t have to have, but we give them the freedom to discuss anything and everything, and they learn so much from each other.”
To learn more about patient navigation, check out the rest of our Heroes in Pink!