At 79 years young, Emsie loves the outdoor and active Colorado lifestyle. But when she noticed a new large lump near her hip she decided it would be a good idea to have it checked out a doctor (Emsie previously had hip surgery and thought it may be related to that). Never in her wildest dreams did she think that a routine surgery to remove the lump would result in an extremely rare sarcoma diagnosis.
“When the doctor said that the results from the tumor biopsy came back as sarcoma, I was devastated,” Emsie says. “I have always been very healthy and active. The diagnosis was shocking.”
Emsie underwent surgery in 2011 to remove the tumor and it was considered successful. Or so they thought. Her care team was stunned when in 2017 a scan showed that the sarcoma was back.
“The type of sarcoma I have is called ‘Undifferentiated Giant Spindle Cell Sarcoma’. It is very rare,” she explains. “Usually if it recurs it is in the first one to two years after diagnosis. Not six. Everyone was baffled.”
Emsie was referred to the sarcoma specialists at the University of Colorado Cancer Center by her surgeon as well as numerous friends who had been treated there. In the initial meeting with the CU care team Emsie got the news she never wanted to hear-a recommendation to get her leg amputated.
“It was horrifying to think that I may lose my mobility,” she says. “And it was not guaranteed that the cancer would not come back again. But it was my best shot.”
After some consideration Emsie very reluctantly agreed that she would go through with the amputation. She decided to travel to Boston for the surgery so that her children would be able to care for her after. But a phone call from her oncologist, Victor Villalobos, MD, PhD, CU Cancer Center member, changed her plans.
“I was just about to head to the airport when Dr. Villalobos called me and said he got my genetic test results back. I couldn’t believe it when he told me I should rethink the amputation,” she says. “He went on to explain that my report showed some markers that indicated I may be responsive to immunotherapy. He made it very clear that there were no studies to show the efficacy of the treatment, but it may be worth a shot.”
Emsie didn’t think twice-she was willing to try anything if it meant saving her leg and active lifestyle. She received her first infusion of Keytruda, an immunotherapy drug, at the CU Cancer Center and then travelled to Boston for an additional three infusions.
Keytruda works by blocking the PD-1 pathway, which can help cancer cells hide from the immune system. Usually this treatment is used in different types of cancers including advanced non-small cell lung cancer, advanced melanoma, and advanced cervical cancer. There was no way of telling whether thedrug would work on Emsie’s sarcoma. She had to wait for three infusions to see if there was any effect.
“The day of the scan I was incredibly anxious,” she says. “But as soon as the doctor walked in I could see her eyes were dancing. The scan showed a 100 percent response. It was a miracle.”
Molecular testing will not identify a more effective treatment for every patient, as there is still so much to learn about what drives various types of cancer. For some patients, like Emsie, it offers an opportunity to control cancer. She acknowledges that her treatment is not a cure but it has provided her a sense of reprieve.
“If they had not done the testing on my tumor it is very likely I would be in a wheelchair right now, or worse,” she says. “They not only saved my life, they also saved my leg and quality of life.”
Now, Emsie is receiving infusions at the local cancer center in Vail, but she loves travelling down to the University of Colorado Anschutz Medical Campus to see her “favorite people”.
“The sarcoma team makes you feel like an actual person, not just a patient or a name on the intake form. They have always gone the extra mile,” she says. “I want people to know that they can have confidence in the care at the CU Cancer Center. I just love them all dearly and I can’t thank them enough.”