Research Is the Reason I Can Advocate for MBC Patients

Because of research, Julia Maués is here for her son more than a decade after being diagnosed with breast cancer during pregnancy

When Julia Maués was in her second trimester of pregnancy and felt a lump in her right breast, she didn’t hesitate to bring it up to her doctor, who immediately ordered an ultrasound.

“I remember her nurse checking availability at the breast radiology clinics nearby. I opened my calendar and said, ‘Well, I could do next Tuesday morning,’” Julia remembered. “The nurse looked at me and said, ‘Oh no, honey, you’re going today.’”

That ultrasound turned into a same-day biopsy, and the radiologist told Julia that she was “pretty certain it was cancer.”

A breast cancer diagnosis at 29, let alone during pregnancy, is almost unimaginable. After all, pregnancy-associate breast cancer (PABC)—defined as occurring during pregnancy or lactation, or up to one year postpartum—is rare, affecting about one in 3,000 pregnancies. Patients with PABC often find their symptoms dismissed and diagnoses delayed, and there’s a lack of data and research about how best to treat a pregnant person.

Julia, though, was fortunate—fortunate to have the privileges of access to good care, an education, good health insurance, and more—to be taken seriously and get care quickly.

“At the time, my idea of breast cancer was that it was potentially bad, but that if you treated it and caught it early, you were going to be fine,” she said. “I was scared for my life, but not that scared. I mostly thought, I don’t want to be going through this, especially at this time. My biggest fear was what would happen to my son: Could I get treatment while pregnant? Would be born early? Would we have to terminate the pregnancy?”

Julia was diagnosed with HER2-positive breast cancer and immediately started treatment, which, for her, meant four rounds of AC chemo—a type that is known to have more intense side effects but that has been shown to be safe to use during pregnancy.

Julia described her pregnancy from then on as very isolating.

“I didn’t like being in the cancer world with a pregnant belly, or the gestational world with a bald head,” she said. “Everyone wanted to tell me how bad they felt, and I wanted to be in a bubble.”

After a short break following chemotherapy, Julia was induced at 37 weeks so she could immediately start HER2-targeted treatments. She gave birth to her son, Max, early in the morning.

“He was healthy and perfect, and he had so much hair, while I was completely bald,” she said. “I remember the doctor telling me later that the placenta was twice the size it normally is. She said, ‘I’ve never seen something like this.’” It did what it had to do to protect the baby during chemo.”

After she delivered, Julia had a CT scan at the hospital. A week later, she met with her oncologist to discuss the results, and she got even more unimaginable news.

“He had tears in his eyes when he had to tell me: ‘You’re a new mom, but you have metastatic breast cancer. It’s much worse than we thought,’” she remembered.

Julia started on HER2-targeted treatments and then another chemotherapy regimen. But treatment ground to a halt when she began to go in to heart failure.

“Some of these treatments are so toxic to your heart, and pregnancy can be as well,” she said. “The treatments were working, and the cancer was shrinking, but we had to stop. I became really afraid Max would grow too attached to me. I loved him and I wanted to spend time with him, but I thought I was going to die.”

At that point, Julia had to stop the cancer treatment to focus on healing her heart. As she got stronger, her doctors proposed trying a new drug that was thought to be less toxic to her heart. No one knew for sure whether it would be safe, but they also knew she couldn’t go back on the HER2 treatments she was on originally. That treatment has been effective, and her care team, which includes cardio-oncology specialists, has been able to closely monitor and manage any effects on her heart.

Today, Julia gets monthly infusions to keep the disease at bay. Over the last decade, she has faced the complex realities of living with cancer long term—including new health challenges, ongoing treatment, and side effects that continue to impact her body and life.

Because of her diagnosis, Julia had to give up a career she loved as an economist, but that has meant more time with Max, who is now 12.

“I didn’t want to leave my career and didn’t imagine myself becoming a stay-at-home mom, but it has been so amazing to have time with him,” she said. “I’m his person. I got the gift of being there for him.”

Over the last decade, Julia has tried not to dwell on why she was diagnosed.

“I see it as: OK, this is your life. Here are the cards you’ve been dealt. You do the best you can with what you have, and sometimes you can make wonderful things with bad cards,” she said.

For her, that has meant not only raising her son but advocating for metastatic breast cancer research. She co-founded a nonprofit called GRASP (Guiding Researchers and Advocates to Scientific Partnerships) with another metastatic patient advocate, Christine Hodgdon, with the goal of connecting patients and cancer researchers, bringing the patient voice to science.

“I love talking to researchers,” she said. “I think it’s amazing they made a conscious decision to want to study cancer—one of the most complicated diseases there is. They wanted to spend decades in school, have most of their work fail, and fight like crazy to get money to do their research. They’re not doing it to get rich, because of the great hours, or the work-life balance. Their mission in life is to make progress and improve the lives of people dealing with cancer like me.”

Julia knows the power of research firsthand. Thanks to groundbreaking treatments made possible by BCRF researchers and others, she has been able to watch her son grow up. But she also stresses that so much more research is needed to improve patients’ quality of life, end devastating disparities, improve outcomes for people with metastatic breast cancer, and, ultimately, save lives.

“I really want all my energy to go to research,” she said. “We’ve made real progress, especially in HER2-positive breast cancer. I would not be alive if this progress hadn’t been made.”

Read more stories from BCRF’s Research Is the Reason storytelling initiative here.