Lourdes Monje: Coping With Metastatic Breast Cancer as a Young Adult 

Lourdes Monje had always been mindful about their health, regularly performing self-checks as advised. One morning, in October 2020, something felt different—a mass in their chest that hadn’t been there before. The unexpected discovery changed everything.

Lourdes was 25 at the time and in the process of moving from New York with the goal of launching a professional career in Philadelphia. They didn’t have a primary care provider, which coupled with the challenges brought on by the ongoing COVID-19 pandemic, added to the anxiety of the situation. However, Lourdes was able to get an appointment with their sister’s primary care physician.

The doctor recommended an ultrasound. “When the ultrasound technician saw the imaging, they called in another doctor. I knew things were a little bit iffy. They recommended that I go in for a biopsy and that is where the fear started.” The next day, the doctor called with the official diagnosis of breast cancer. “I felt my world stop. All my plans had to go out the window. It was just about getting this taken care of,” Lourdes said.

Unsure of what to do next, Lourdes turned to their primary care doctor for guidance on how to prepare for their visit with the oncologist. “I talked to my primary care doctor because I had no idea how to talk to an oncologist or what I was supposed to be asking.” After speaking with a surgical oncologist, Lourdes underwent a series of scans over the following weeks—MRIs, CTs, and finally a PET scan. Each scan provided additional information, and a follow-up biopsy of the lymph nodes confirmed stage IV breast cancer.

While the path to their diagnosis was complicated due to the pandemic, Lourdes was grateful to have been taken seriously from the start. They received the diagnosis of stage IV breast cancer in January 2021. The idea of cancer was terrifying, something Lourdes had never anticipated so young. They were devastated.

In their mind, the words “stage IV” were synonymous with death. However, their oncologist explained that while the cancer was technically stage IV, it was still treatable. Lourdes began treatment with hormone suppression and the molecularly targeted therapeutic, ribociclib (Kisqali). The treatment worked for 6 months before a switch was made to another molecularly targeted drug, palbociclib (Ibrance), which they remained on for over 2 years.

During this period, Lourdes also underwent a mastectomy and radiation therapy. A follow-up scan, however, revealed nodules in a lung. This news was unexpected and crushing after a period of stability. Their doctor recommended a clinical trial as the best chance for finding the more effective treatment. Fortunately, Lourdes qualified for a trial at the Sidney Kimmel Comprehensive Cancer Center at Jefferson Health and has been receiving an investigational therapeutic for several months now.

The clinical trial has come with its own set of challenges, including managing some anticipated side effects, but Lourdes remains hopeful. “It was a little bit difficult. There was a moment of not knowing if I was gonna have to just get off the drug altogether, but things have settled down now.” Despite the fears and uncertainties, they said participating in the trial feels like an opportunity not just for personal healing, but also for contributing to future advancements in cancer medicine. “The way I’ve been approaching this trial is knowing that it’s not just for me, it’s for other people who will come after me. Because I know that the two medications that I had access to beforehand that are relatively new are because of people like me who went through clinical trials,” they said.

Throughout their journey, Lourdes has also navigated the complexities of gender identity. During the process, they began to understand more about being nonbinary. Decisions about breast reconstruction brought up questions about personal comfort with gender expression. Lourdes’s surgeon was supportive, and the conversations were respectful and affirming. While Lourdes hasn’t faced discrimination, there’s always a sense of vulnerability when sharing this part of identity with health care providers. “Even though I haven’t been treated badly, just the fact that there’s a part of me that is hesitant to be my full self is an issue,” Lourdes said. These experiences underscore the importance of small but significant changes in the health care system, like asking for preferred pronouns or including space for preferred names on forms.

Living with stage IV cancer presents many challenges. “There are a lot of really specific challenges as a young adult diagnosed with cancer, specifically metastatic breast cancer—like the prospect of having children, the prospect of having a career.” Watching friends progress in their careers, start committed relationships, and start families was difficult, knowing that personal plans had to be put on hold. For a long time, it felt like managing the diagnosis was Lourdes’s full-time job. But being part of the clinical trial has brought new hope. The side effects have been manageable, allowing Lourdes to continue working and spending time with their family, friends, and their sweet dog. “I feel like I’m having as normal of a life as I can and creating the memories that I’ve wanted to, that are so important to me.”