Fifteen years ago, Katy Sims was an 18-year-old college freshman newly diagnosed with bone cancer.
Today, Sims is cancer-free and a UNC Health psychiatrist. She shares her journey to give hope to other young adults dealing with a cancer diagnosis.
“To young adults facing these devastating experiences, I want to show that you can make it through,” Sims says. “You will be a different person when you come to the other side, but that isn’t always a bad thing.”
Finding the Cancer
Bone and joint cancer is rare, accounting for 0.2 percent of all new cancer cases in 2021. Its five-year survival rate is about 67 percent, an especially frightening figure considering that this type of cancer primarily affects adolescents and young adults.
“I just started the first semester of my freshman year at Davidson College,” Sims says. “I started having severe abdominal pains. It hurt so badly that I went to the emergency room to be checked out. They sent me home, but then called me the next day to come back in immediately.”
She was called back because her CT scan showed something ominous: There appeared to be a tumor in her lower left lung. Doctors wanted to perform more tests to better understand what it was.
“I remember calling my mom and being extremely upset. I had a history of lung cancer in my family, and I thought that’s what was happening to me,” Sims says.
Looking for answers, she turned to N.C. Cancer Hospital, where doctors told her she needed surgery right away to remove the tumor, which was actually growing on one of her ribs, not her lung. On Nov. 21, 2007, about six weeks after her emergency department visit, Sims went into surgery at UNC. That’s when doctors realized the severity of her case.
“When they were able to see the tumor, they were able to diagnose it as Ewing sarcoma, an aggressive type of bone cancer. With Ewing tumors, you have to remove any bone or tissue it touches, so the surgeons had to remove three of my ribs and some surrounding tissue,” Sims says.
Recovering from Surgery
Sims recovered in the surgical intensive care unit. A few hours after surgery, nurses discovered she was bleeding internally where the tumor had been removed.
“Ewing tumors are vascularized, meaning they have a very big blood supply, so it can cause a lot of bleeding when they are removed,” Sims says. “They also had to cut blood vessels and nerves when removing the tumor, which led to more bleeding and some nerve damage that caused me a lot of pain and partial paralysis in my chest.”
Sims was rushed into surgery. Doctors tied off the blood vessels responsible for the bleeding, but the pain and partial paralysis of her diaphragm remained, making it difficult for her to take deep breaths or cough.
This was just the beginning of Sims’ fight against Ewing sarcoma, the most common type of bone cancer along with osteosarcoma. After the tumor was removed, she met with another doctor at UNC, who told her she would need chemotherapy. She was devastated.
“Young people don’t get cancer that often. I had been telling myself I didn’t have cancer—that it was just a tumor, and they would remove it and that would be the end. The possibility of me actually being truly sick wasn’t a possibility in my head until it hit me in the face,” Sims says.
But she was sick, and her cancer required an intensive form of chemotherapy that would greatly affect the physically fit 19-year-old.
Starting Chemotherapy
Sims was now facing almost a year’s worth of chemotherapy treatments.
“I finished that first semester of school in the hospital doing my first chemo treatment,” she says.
Sims moved home, where her mother helped her cope with the effects of chemotherapy: exhaustion, nausea, dizziness, decreased appetite and hair loss. Because she entered Davidson with enough credits to be a second-semester freshman, she only had to take one reading class that spring to stay on track. But even that proved difficult.
“With chemo, your brain gets foggy, and I was exhausted,” she says. “My eyes became incredibly dry, and my vision was blurry. I wasn’t able to read. My mom would read to me sometimes for class. It was especially tough because I love reading, and I couldn’t even do that for myself.”
Sims started listening to audiobooks, which provided some comfort, but she couldn’t help but feel like she was missing out. An avid swimmer growing up, she didn’t have the strength or energy to get into a pool while undergoing treatment.
The life she had started at Davidson was paused. Sims didn’t tell many friends about her battle with cancer, and those she did tell couldn’t quite understand what she was going through.
“It was lonely. I would spend days at a time in the hospital for my chemo sessions, and in between sessions I was just trying to recuperate and get my red blood cell count high enough for my next round of chemo,” she says.
After nine months of chemotherapy, Sims’ body had enough. Her red blood cell counts weren’t rebounding as quickly, and her heart began to show signs of decreased function. Doctors ended her chemotherapy early. She also had a blood clot that developed around the catheter into her heart that was used to administer her medications. She started taking blood-thinning medicine to get rid of the clot, which had moved into her lung.
After Chemotherapy
Fortunately, Sims’ doctors were confident that even though she didn’t complete a full year of chemotherapy, her Ewing sarcoma was in remission. She was also taking medications to keep the blood clot from growing or moving. She was eager to get back to the life she started before cancer, so a week after she finished chemotherapy, she went back to school for her sophomore year in fall 2008.
“Looking back, I may have gone back too quickly,” Sims says. “I still didn’t have hair, I would get out of breath walking to class and I would take naps all over campus. Sometimes I would forget to go to class or forget to do an assignment. I couldn’t memorize information for tests.”
During this time, Sims was still going to UNC once or twice a month for follow-up visits. As she continued her college career, her visits became less frequent and her physical and mental health improved. She made more friends and got back into swimming. She graduated from Davidson in 2011 with a bachelor’s degree in biology and started to pursue a medical degree at the UNC School of Medicine. But her health struggles weren’t over.
A New Diagnosis in Med School
While in medical school, Sims was diagnosed with lupus, an autoimmune disease in which your immune system attacks your own tissues and organs, affecting multiple parts of the body. She isn’t sure if her bone cancer or aggressive chemotherapy contributed to her developing lupus, but it did affect what type of medications she could take for the disease. Some of the medications she received during chemotherapy, which are also used to treat lupus, have limitations on how much a person is supposed to receive in a lifetime. Sims met some of those limits.
She and her team of UNC doctors were able to manage her lupus despite the limitations. But in 2019, during her third year of residency, another issue arose. The clot that Sims developed during her chemotherapy treatments had moved into her lungs. She flew to San Diego for a specialized emergency surgery to remove it. The surgery went well, and she felt better, less short of breath and more energetic.
Moving Forward
Sims graduated from medical school in 2020 and became a psychiatrist, an interest that was sparked by her time as a cancer patient. When she was going through treatment, UNC’s Adolescent and Young Adult Cancer Program was beginning to offer psychosocial and emotional support services. Those therapists helped her with the many challenges she faced as a college student with cancer.
“When you are going through chemo, it just sucks. You put your head down and do it and hope it gets better after,” Sims says. “But you need more than that to get through it. If I wasn’t able to work with a psychiatrist and therapist who solely treated young people with cancer, I wouldn’t have been able to develop insight into what that experience could mean to my life.”
As a psychiatrist, Sims specializes in treating Latinx patients, geriatric patients and adults with developmental disabilities.
She has been cancer-free since 2008 and is no longer monitored for Ewing sarcoma, but she does have checkups to look for other cancers that could have been caused by the intense chemotherapy she received. She is married and has three dogs that she takes for long walks every day.
If you or a loved one is facing a cancer diagnosis, learn more about your options by contacting the UNC Lineberger Comprehensive Cancer Center.