Heather Houde-Parker began feeling a nagging soreness in her abdomen in November. Having just delivered twins a year earlier, the 27 year old suspected it was a hernia from lifting them. She mentioned it to her primary care physician three months later while being seen for a sinus infection. Also suspecting a hernia, her doctor ordered an ultrasound. What they found instead was a spot on her liver. 

"I pretty much knew that it was going to be cancer," says the single mother of three young children all under the age of 5.

A biopsy revealed an extremely rare type of cancer called leiomyosarcoma or LSM. It makes up between 5 to 10 percent of soft tissue sarcomas, which are relatively rare. Heather was referred to Edwin Choy, MD, PhD, director of Sarcoma Research at the Mass General Hospital Division of Hematology Oncology. Choy told Heather that leiomyosarcomas can be very unpredictable. It is an aggressive cancer that is typically not very responsive to standard chemotherapy.

"When Heather came to see me, the disease was already widespread," says Choy, who has extensive experience both studying the disease and caring for sarcoma patients.

Although surgery was Heather’s best option, and she appeared to be a good candidate, a PET scan soon revealed she had between 7 and 9 tumors in her abdomen. Some tumors were attached to organs. Heather was told surgery would be impossible.

"I burst into tears. I went from thinking it would be gone, to not knowing what the prognosis would be," says Heather.

"Due to the large tumor size and diffuse distribution, surgery was initially not an option," explains Choy. "So we embarked on chemotherapy to try to control the disease and give her a chance at putting the disease at bay for as long as possible."

In March, Heather began intensive chemotherapy. Too weak to drive, her family took turns driving her 70 miles from her home in Dover, NH to the hospital. Before long, the tumors began to shrink, and her hopes began to grow.

One Step Forward, Two Steps Back

At the time, Dr. Choy and his team were looking into starting a new clinical trial to treat leiomyosarcomas. Seeing that Heather would be the perfect candidate, they fast tracked the approval process. Right before she was to be enrolled, however, they discovered one of her tumors had grown. She was no longer eligible.

There was, thankfully, also encouraging news. After several cycles of chemotherapy on a different regimen, the tumors were now small enough so they could be surgically removed, and some of her tumors had become invisible by CT scans. In March, Heather underwent an 8-hour surgery. In the end, Kenneth Tanabe, MD, chief of Surgical Oncology removed five tumors. But because of the metastasis, he also had to remove her gallbladder, part of her stomach and two-thirds of her liver.

“I basically had gastric bypass. I was actually glad because I was a mom of three kids who hadn't lost all the baby weight!” jokes Heather.

A Brief Setback and then Success

Following an 8-week recovery period and two more rounds of chemotherapy, Heather was finally eligible for Dr. Choy's trial. The goal was to prevent the tumors from returning. However, the powerful daily medication caused such severe mouth sores she couldn't eat. She was eventually taken off the trial and followed closely with no further treatments.

That was almost two years ago, and today she continues to be cancer free.

"I knew I had to be here for my kids. They were my motivation," says Heather. Today, when not playing with her three children, she's studying to become a nurse. “I would not change my cancer diagnosis for anything. It's made me a stronger person,” she said.

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