Rare stage 4 sarcoma survivor: ‘Thanks to UT MD Anderson, I’m already beating the odds’

In May 2014, I was a fresh college graduate in New York City who was excited to begin my life as a professional ballerina.

A few weeks later, I was in the hospital with a broken sacrum and a traumatic brain injury, due to a terrible car accident.

Once I recovered, it was clear that I couldn’t dance professionally. So, I did a career pivot and applied to medical school, which had always interested me. About halfway through it, I developed severe preeclampsia, a complication of pregnancy that causes dangerously high blood pressure. I ended up needing an urgent C-section at 37 weeks, followed by an immediate hysterectomy to stop a massive hemorrhage and save my life.

After those two experiences, I really thought I’d reached my quota for brushes with death. Then, just a week after graduating from medical school last May, I was diagnosed with an extremely rare cancer. And, it was stage 4. 

My desmoplastic small round cell tumor symptoms

Looking back now, I can see some symptoms. I’d been experiencing abdominal pain for a couple of months. I have Crohn’s disease, though, so I thought it was just a flare-up, or maybe I’d pulled a muscle carrying my toddler around. But I’d also lost about 20 pounds without really trying. I felt full easily and got nauseous frequently, too. I chalked all that up to jitters about starting residency.

Unfortunately, the pain in my left side kept getting worse. It was so bad during a visit to New Mexico that I finally went to an emergency room. A CT scan revealed a large tumor in my abdomen. It was compressing the descending colon, which explained why I’d been having such trouble using the bathroom. Most of the pain I’d been experiencing was because hardly anything could pass through it. 

How I got to UT MD Anderson

The ER doctors believed the growth was caused by cancer. They just weren’t sure what kind. They suspected it was either lymphoma or sarcoma and performed a biopsy to learn more. When the results came back, they told me to head straight to UT MD Anderson.

The doctors in New Mexico said the cancer cells looked so strange under a microscope that they couldn’t even identify the exact type. But it had lots of mutations, was dividing rapidly and had already outgrown its blood supply. All of those features suggested it was highly aggressive — and I needed an expert, fast.

I’m no oncologist, but I had enough medical training by then to recognize that this was very bad. The cancer was already scattered throughout my abdomen. All the medical literature I’d read indicated that once a cancer has spread in this way — regardless of what type it is — your prognosis is extremely poor.

I was stunned. My son was only 17 months old at the time. I was only 32 and still breastfeeding him. My biggest fear was that he wouldn’t remember me. 

My desmoplastic small round cell tumor diagnosis

I returned home to Houston immediately. I was admitted to UT MD Anderson within a week because I arrived there in such bad shape.

I met first with Dr. Elise Nassif Haddad, a sarcoma specialist who said she thought I had sarcoma, too. I’d need some additional testing to determine exactly which kind, but my condition was serious enough that we couldn’t wait around for the details. I had to begin treatment right away.

Dr. Haddad started me on a chemotherapy regimen within days. A few weeks later, she gave me my official diagnosis. I had an exceptionally rare cancer called desmoplastic small round cell tumor (DSRCT). It’s a form of soft tissue sarcoma usually found in children. It’s so rare that fewer than 1,000 cases of it have ever even been documented. My chances of having it were about one in a billion.

My desmoplastic small round cell tumor treatment

Unfortunately, my chances of surviving this disease were not much better. Because of how many spots of cancer were already scattered around my belly, I didn’t think I was eligible for surgery. And, while I knew that chemotherapy might prolong my life, I didn’t think I would ever be cured. As it turns out, I was wrong — on both counts.

The chemotherapy regimen I’d begun turned out to be just right for treating DSRCT. So, I stayed on it and finished all six rounds Dr. Haddad recommended. Then, I met with Dr. Chris Scally, a surgical oncologist who specializes in treating sarcoma. He said I was actually a good candidate for surgery, based on my response to chemotherapy.

Dr. Scally believed he could successfully remove all the remaining cancer. I didn’t think that was even possible. But he seemed so confident that I scheduled the surgery last October. Dr. Scally got all the cancer out in just four hours.

Looking ahead with hope

My doctors at UT MD Anderson have been very clear about my prognosis. DSRCT is still a bad disease, and my chances of recurrence are quite high.

But I’ve shown no evidence of disease since my surgery last fall, which is something I never thought I’d be able to say. My doctors are both guardedly optimistic, and I’m on maintenance chemotherapy now and doing really well. I also live right next to the world’s greatest cancer center, and I get checkups every month.

Medical literature indicates that only a handful of people have lived longer than five years after receiving this diagnosis. Most people with this disease see a recurrence within 9 to 14 months of attaining remission, and I’m already at month 5. So, I don’t know if it’s realistic to hope that I can watch my son start the first grade or not.

Still, I want to see how far I can go. Things have already gone as well as they possibly could. And, thanks to UT MD Anderson, I’m already beating the odds. I am incredibly grateful.

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