Katelyn’s Story

As a doctor who specializes in caring for people in the hospital, Katelyn Gamson knew the ins and outs of surgery and recovery. That knowledge proved useful when she found herself in need of care.

In the summer of 2017, Katelyn was diagnosed with synovial sarcoma, a very rare form of soft tissue sarcoma. The matter was all the more complicated because Katelyn, now 34, was pregnant.

“The diagnosis was a huge surprise,” says Katelyn, who lives in San Francisco. “Even the surgeon who did the biopsy was shocked. This was not something we were considering.”

Katelyn had recently found a lump in her armpit. With her medical expertise, she knew she didn’t want to leave it unchecked.

“I wanted to make sure it wasn’t breast cancer,” she recalls. “Knowing I had a baby on the way, I wanted to be healthy for her.”

At first, doctors thought that one of her glands was inflamed or that her breasts were undergoing changes related to her pregnancy. She describes hearing that she had sarcoma as “surreal.”

Wanted: Sarcoma Specialists

Katelyn; her husband, Nick; and her parents quickly began researching hospitals with experience in synovial sarcoma, which affects only 800 people in the United States each year. Breast cancer, for comparison, is diagnosed in 200,000 US women per year.

“We knew it was very rare and that I wouldn’t be able to see just any cancer doctor,” she says. “A close family friend who is an oncologist advised my family and me to go to a center with a good amount of experience with these sarcomas.”

Their searches led them to Memorial Sloan Kettering and, specifically, to William Tap, who is Chief of MSK’s Sarcoma Medical Oncology Service. Katelyn had read good things about Dr. Tap through her research and even had peers who had trained with him. Dr. Tap works hand in hand with MSK surgeon Samuel Singer, Chief of MSK’s Gastric and Mixed Tumor Service.

“The Last Thing I Wanted to Be Thinking About”

Katelyn knew she had found the doctors she wanted to see, but there was a catch: Her insurance would not cover care at MSK. But case manager Mila Rose Villaceran, who coordinates logistics for people with out-of-network insurance, was determined to find a work-around.

“As soon as I saw that she was pregnant with a rare cancer, and that she had already gone to multiple doctors, I cleared her to see Drs. Tap and Singer while I worked on the insurance authorization,” recalls Ms. Villaceran. “I called her the same day to introduce myself and told her to focus on her baby and her health — and that I would take care of the insurance. I think that made her hopeful and refocused her mind on what was important.”

Eventually, Ms. Villaceran arranged for Katelyn’s care to be covered.

“Insurance was the last thing I wanted to be thinking about, and Mila really fought for me,” Katelyn says. “She has such a huge heart.”

Two weeks after her diagnosis, Katelyn and her family were on a plane to New York City and MSK.

Meeting Her Team and Making a Plan

Katelyn’s care at MSK began the second she walked in the door at the Rockefeller Outpatient Pavilion.

“Nick, the security guard, was so nice, and everyone was so cheerful and ready to help,” she recalls. “Coming into a welcoming environment made me feel better.”

Dr. Tap remembers his first meeting with Katelyn and the unique challenges that her situation presented.

“She was concerned because she was getting a lot of different opinions,” he says. “When she came here, we had to come up with a plan quickly because we had such a tight window with her pregnancy.”

That strategy came together swiftly because Dr. Tap is part of a multidisciplinary team of doctors, surgeons, nurses, and other sarcoma experts who all work together to determine the best course of action. Their first step was to have Katelyn undergo molecular testing to make sure the diagnosis she was given was correct.

“There are more than 80 different types of sarcoma, and sometimes they can look very similar,” Dr. Singer notes. “We have special tests here that we use to make precise diagnoses. If you don’t have the right diagnosis from the outset, you’re not going to get the best treatment.”

And Katelyn and her family had the subject matter authorities in their corner.

“A lot of discoveries about synovial sarcoma were made here at MSK,” Dr. Tap says. “It’s nice because you have the world experts in this disease right there, and if there are any questions — especially in her case, where time was of the essence — you want to be able to pick up the phone and have best person discuss it with you.”

The molecular testing showed that Katelyn’s tumor was indeed a synovial sarcoma. Next, she met with Dr. Singer to formulate a surgical treatment plan. After Katelyn had surgery, her doctors would determine if additional treatment, such as radiation or chemotherapy, would be needed.

But Dr. Singer felt he could take out Katelyn’s entire tumor so that she could return home and finish her pregnancy.

“Dr. Singer seemed so confident in his ability to get it all out,” Katelyn says. “I felt really optimistic about the plan we put in place.”

Baby on Board

Katelyn’s pregnancy made for a complex surgery. Because MSK specializes in cancer care, an obstetrician wasn’t part of her original care team. But Dr. Singer found a solution that made everyone comfortable: He would do the operation at NewYork-Presbyterian Hospital next door, where an obstetrician would be standing by in case of emergency.

“She sought out treatment here, and I didn’t want to have to send her back to California,” he says. “So I talked to the chief of surgery there, and we made it work. I felt for her and wanted her to get the best surgery.”

During a two-hour procedure in September 2017, Dr. Singer was able to remove all of the tumor. Katelyn stayed in New York for about a month after the surgery and was able to continue her pregnancy.

“Compared with the surgery and dealing with the diagnosis, the pregnancy was the easiest part!” she exclaims. “After the surgery I was pretty limited for a while. The surgery involved my dominant arm, so initially I couldn’t even brush my teeth or shower or type on my phone, but little by little it started to get better.”

A New Life

In December 2017, Katelyn and Nick got an early Christmas present: Their daughter, Emily Ruth, came into the world a month early but in perfect health. Now fully settled back in California, Katelyn and Nick are spending precious time getting to know their new addition.

Katelyn undergoes scans with her local doctor to make sure her cancer is gone, and she’ll come back to New York once a year to check in with Drs. Tap and Singer.

“People told me, ‘You just need to go to the best place in the country — it doesn’t matter where it is,’ ” Katelyn recalls. “I needed that encouragement to get to the place that gives the best care, regardless of distance or logistics. I’m really happy I was seen at MSK.”