Julia Maues was excited to find out she was pregnant — and then she was diagnosed with breast cancer. She went through chemotherapy and delivered a healthy baby boy, but shortly after the birth, she learned that the cancer had spread throughout her body. She would need lifetime of treatment for metastatic breast cancer.
The rollercoaster of emotions Maues, then 29, felt were dominated by fear that she wouldn’t be around to raise her only son, Max. But with the help of doctors including Nancy U. Lin, MD, director of the Metastatic Breast Cancer Program in the Susan F. Smith Center for Women’s Cancers at Dana-Farber, Maues’ disease has since stabilized; Max is now a 5-year-old readying for kindergarten, and Maues is serving a dual role as mom and a patient advocate. Now a familiar face at many metastatic breast cancer events, she uses her experiences to educate others at Dana-Farber and conferences across the country.
“My story with breast cancer can be seen as a tragic one,” Maues writes on a website she created to share her story and offer insights to other patients. “But instead, I want people to see it as hopeful and inspiring. Cancer is part of my life, but it doesn’t define me.”
Maues’ diagnoses — and the arrival of Max
Maues was originally diagnosed in St. Louis, where she lived at the time. She received chemotherapy infusions close to home while she was pregnant, and although she experienced back and chest pain, imaging or scans could not be safely performed during her pregnancy.
Max was born on July 30, 2013. “He had a full head of hair, and I was still bald from chemo,” recalls Maues. At this point, doctors could safely examine Maues to uncover the source of her pain — at which point they discovered that her cancer had spread to her brain, liver, and bones.
Quitting her job as an economist, Maues stayed home with Max and focused on her new treatment regimen. Because of the seriousness of her condition, she also began contacting metastatic breast cancer specialists nationwide. When the metastases on her brain seemed to have returned after surgery and radiation, her search zeroed in on experts in that area. Maues learned that Dana-Farber handled a great number of patients with brain metastases, and that Lin was “the best” at treating them. Intrigued, Maues came to Boston with full support from her St. Louis oncologist.
“The first time I met Dr. Lin, she was so warm and personable, interacting with me as another young woman and mother,” remembers Maues. “Then she took out a piece of paper, wrote down all the available treatments, and explained which she felt was the next best option for me.”
Fighting for herself and others
Working together with Lin and her St. Louis team, Maues devised a new plan and a revised chemotherapy regime led by Lin in consultations with Maues’ doctors at home. The experience of seeking out and finding the best treatment made a deep impression on Maues. When her personal life later brought her from St. Louis to Washington, D.C., she decided to help others as a patient advocate.
Now she lobbies Congress and various government and private sector organizations for funding directed at metastatic breast cancer research and treatment. Through her travels and online groups, she connects with others in the community as often as her health and energy allow — spreading the word about treatment options, including a growing number of clinical trials at Dana-Farber and elsewhere.
“I’ve learned that while I didn’t choose to have cancer, I can choose how I live with it,” says Maues. “I see myself as an experienced patient now, and want to share my knowledge to impact the lives of others.”
In addition to fighting for other patients, Maues is enjoying the unexpected extra time with Max, which she says, “has been wonderful.” She wants to create as many strong memories with him as possible while living day-to-day with the reality of an incurable disease that could worsen at any time.
“Julia is truly a force,” says Lin. “Despite having an incurable disease, she lives her life with hope and gratitude, and she has channeled her energies into fierce activism and advocacy for metastatic breast cancer research and care. I cannot even begin to count the number of people whose lives she has touched — her example pushes us all to do better.”