by Christina Wang, Director of Liposarcoma Support Network
In July 2022, shortly after my 29th birthday and graduation from business school, I was diagnosed with dedifferentiated liposarcoma. I first started noticing a hard lump in my abdomen. I was referred to get an MRI, was originally diagnosed with a benign ovarian cyst, and underwent my first open abdominal surgery to remove the mass. After pathology came back, my surgeon told me my tumor was liposarcoma – which he admitted to having never seen before. Even more uncommon, he said, was being diagnosed as a young adult, as most patients diagnosed with liposarcoma are older. It was then that I was referred to the sarcoma clinic at my hospital.
After researching the disease online and through various forms of social media, I met other patients who taught me a lot about what life with this diagnosis likely means – specifically, a lifelong challenge. Liposarcoma has a high recurrence rate, and my experience has reflected this reality – I have had two recurrences since my initial diagnosis, which have resulted in:
- Three major abdominal surgeries (2022, 2023, 2025)
- Six months of chemotherapy in 2023
- Six weeks of radiation in 2024
- Countless CT scans and plans for ongoing monitoring for life
When I was first diagnosed, I had never heard of liposarcoma (or sarcomas in general, for that matter) – much less what it meant for my life. Though I am lucky to be treated at some of the best sarcoma hospitals in the US, I know there are still limits to the options available for liposarcoma patients today.
I have also been lucky to have worked with an incredible therapist who is a cancer survivor. She has helped me make sense of my experience, accept whatever comes my way in the future, and still find joy in my day-to-day. I am also lucky that despite my multiple surgeries – I live a mostly normal life and can do almost everything I was able to do before my diagnosis. Though I still have my moments of weakness and fear, for the most part, I feel sometimes that cancer has helped me appreciate all the moments in my life even more – and take everything a little less seriously.
One of the things I noticed early was that there was no dedicated organization, focused solely on supporting liposarcoma patients, despite liposarcoma being one of the more common types of sarcomas. I connected with my oncologist, Dr. Neeta Somaiah, Chair of the Sarcoma Department at MD Anderson Cancer Center in Houston, who introduced me in 2024 to The Life Raft Group, a nonprofit that has made incredible strides for other rare cancers.
The wonderful team at The Life Raft Group decided to take Liposarcoma under their wing, alongside the other diseases they support like TGCT and GIST. Together, we launched the Liposarcoma Support Network (LSN), the first program and nonprofit group specifically dedicated to liposarcoma patients! Our goal for the organization is to provide a patient voice in advancing research, treatment options, funding, and education for patients and caregivers alike.
“As I thought about what I wanted to do to make sense of my experience, one of the things I felt early on was that I wanted to do something to advance the cause for liposarcoma patients. I figured – since being diagnosed with a rare cancer at my age was rare – it also meant fewer people would be interested in or aware of the cause – so why not me?”
One initiative we are working on that I feel extremely passionate about is advocacy work to make sure more companies and researchers are working towards a cure for liposarcoma. I strongly believe that without a dedicated organization, we cannot make systemic progress in tackling this disease. So far, the work has been rewarding and motivating, especially in times when it feels like not too much of my cancer experience is in my control. I hope what we do together will make a difference hopefully for me, but also for all other liposarcoma patients, present and future.
If you are interested in working with us, please reach out! (support@liposarcomasupport.org)
