How I learned to use my voice and seek community and support after a de novo metastatic breast cancer diagnosis.
Growing up Asian American, I was taught to respect my elders and authority figures, whether they were right or wrong. That included doctors. Speaking up was not encouraged, and it did not come naturally to me.
When I was diagnosed with de novo metastatic breast cancer in 2019, I carried that mindset into my care. I was also consumed by fear, reading survival statistics and treating them like a prediction. I told my family and friends that I was going to die.
The cancer had already spread to my liver and distant lymph nodes. I spent most of 2020 undergoing chemotherapy, lumpectomy surgery, 35 rounds of radiation, and physical therapy.
Losing my hair affected me more deeply than I expected. I knew it would eventually grow back, but that did not make losing it any easier. It changed how I saw myself in ways that are still difficult to explain.
For me, metastatic breast cancer means knowing that I will be in treatment for the rest of my life. There is also the anticipatory grief that comes with a stage IV diagnosis. In the beginning, the side effects took such a toll on my quality of life that there were times when I did not want to live.
In those early years, I was not focused on living. I was focused on dying.
My parents wanted me to become a doctor, and I struggled under that pressure. I attended the University of California, Santa Cruz, but did not complete my degree. When I later tried to return, the requirements had changed, and I told myself I did not need a degree because I was already working.
After my cancer diagnosis, though, I had an epiphany. I wanted to do something different with my life, something that felt meaningful to me. So I decided to go back to school and finish my degree.
I enrolled at the University of North Texas. In 2022, I graduated with a Bachelor of Applied Arts and Sciences and made the President’s List twice. With my sorority sisters and friends supporting me, I walked at graduation and received my diploma. It is one of my proudest accomplishments.
Going back to school did not make the fear disappear, but it reminded me that my diagnosis was not the only thing shaping my future.
As I continued living with metastatic breast cancer, I realized I could not do everything alone. I feel so grateful to have an oncologist who makes me feel comfortable speaking up and advocating for myself. She listens to me, supports me, and always encourages me to live my life. She also connected me with a social worker who introduced me to resources and suggested that I find a mentor through Imerman Angels.
That is how I met my mentor, Abigail Johnston, who is living with metastatic breast cancer and advocates for the MBC community. At a time when I felt isolated and overwhelmed, Abigail was one of the first to truly understand what I was going through. That connection changed everything. Through Abigail’s guidance, I found Unite for HER, Project Life MBC, and Living Beyond Breast Cancer (LBBC). For the first time, I began to see the community that was there for me.
Connecting with someone who is living a purposeful life with metastatic breast cancer gave me hope in a way that statistics never could.
I started attending Living Beyond Breast Cancer conferences virtually in 2022. I remember hearing Dr. Virginia Borges share that one of her first patients with metastatic breast cancer was still alive 20 years later. She explained that the longer someone lives with metastatic disease, the less those original statistics apply.
For the first time since my diagnosis, I felt hope. I stopped focusing only on how long I might live and began focusing on how I wanted to live.
Finding the right support group also mattered. At first, I joined a general breast cancer group open to all stages. Most members were celebrating the end of treatment, while I was facing a lifelong diagnosis.
Later, I joined a metastatic breast cancer support group through Breastcancer.org. In our weekly meetings, I did not have to explain the ongoing treatment and uncertainty. Everyone already understood. That mutual understanding changed my life.
Over time, I stopped trying to make my family and friends fully understand what it is like to live with metastatic breast cancer. Now I share most of my cancer-related thoughts within the MBC community, where I feel seen and understood.
I experienced depression while growing up, but mental health was not something my family talked about. My parents saw it as “too American” and believed it was too easy to turn to medication, as if a pill could magically solve all your problems. The message was often: Stay busy, don’t think about it, and get over it.
It took me years to learn how to advocate for my own mental health. I went through multiple therapists and, in my 20s, had a difficult experience with a psychiatrist that left me feeling dismissed and unsupported. At the time, I did not know how to speak up for myself or recognize that the situation was not healthy.
But I did not give up. I kept searching until I found a therapist I could connect with – someone who truly shows up for me. Her support has made such a difference in my life.
I also became a Patient Community Advisor for a study at the University of California, Irvine, focused on stress and coping among Asian Americans with metastatic cancer. I am often one of the few Asian patients in waiting rooms, cancer spaces, and even support groups. Through this work, I have been able to talk openly about growing up with strict expectations, the pressure to succeed, and the stigma surrounding mental health that often is not discussed in Asian cultures. Having that space – and that understanding – has been incredibly validating.
Being part of the study also made me think more deeply about my own care, including genetic testing. I remember feeling so relieved when I tested negative for BRCA1 and BRCA2, but the genetic counselor told me that most of the research linking those mutations to higher breast cancer risk did not include Asian populations. That stayed with me and made me realize how much more representation is needed in research and breast cancer spaces to understand what risks affect people who share my background.
Today, I am no longer focused on dying. I am focused on living. I mentor others through Project Life, hoping to offer the kind of support that means so much to me.
In 2026, I attended LBBC’s Thriving Together: 2026 Conference on Metastatic Breast Cancer in person for the first time after completing the Hear My Voice metastatic advocacy program. I met fellow advocates, friends from my support group, and others I had known only virtually.
More than 500 people attended, including caregivers. What moved me most was seeing so many of us living with metastatic breast cancer together in one room.
During the opening session, LBBC CEO Jean Sachs invited us to stand based on how long we had been living with metastatic breast cancer. I stood up when she called 4 to 6 years. Others remained standing at 7 to 10 years, 15 years, and 20 years. Then women stood up at 25, 27, and even 30 years as the room erupted in applause.
I had seen that moment virtually but experiencing it in person felt completely different. Standing in that room, surrounded by so much hope and joy, felt almost magical. It is a moment that will stay with me for the rest of my life.
I stopped focusing only on how long I might live and started focusing on how I wanted to live.
Sharing my story publicly feels significant because I kept my diagnosis private for a long time. I stepped away from social media because I needed space to process what was happening. I still have not told some extended family members and old friends.
Sharing makes me nervous. But after everything I have experienced, the support I have received, and the people I have met, I finally feel ready.
I want to share my story because self-advocacy, mental health, and community support are often discussed in theory, but living with metastatic breast cancer has shown me what they look like in practice.
If there is anything I wish I had known, it is this: Do not let statistics define you. Seek out your community. And do not give up on finding the support you need.
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The views and opinions of our bloggers represent the views and opinions of the bloggers alone and not those of Living Beyond Breast Cancer. Also understand that Living Beyond Breast Cancer does not medically review any information or content contained on, or distributed through, its blog and therefore does not endorse the accuracy or reliability of any such information or content. Through our blog, we merely seek to give individuals creative freedom to tell their stories. It is not a substitute for professional counseling or medical advice.
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Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill its mission of providing trusted information and a community of support to those impacted by the disease, Living Beyond Breast Cancer offers on-demand emotional, practical, and evidence-based content. For over 30 years, the organization has remained committed to creating a culture of acceptance — where sharing the diversity of the lived experience of breast cancer fosters self-advocacy and hope. For more information, learn more about our programs and services.
