Patient Stories

“I feel very privileged to have the background I do to help me understand what’s happening scientifically, and when I don’t, to know how to research and ask the right questions to help me understand.”

ALL is not a common cancer – it accounts for less than half of 1% of all cancers in the United States and the average person’s lifetime risk of being diagnosed is about 1 in 1,000.

Caroline’s Story: A Long Journey to an ALL Diagnosis

Living an adventurous life at the age of 22, Caroline thought she was pursuing her dream. At the time, she was living in Korea, where she was teaching elementary school and applying for her Ph.D. after completing a bachelor’s degree in Immunology from the University of Edinburgh. She never would have suspected that what she thought was just a regular cold, maybe caught from her young students, would ultimately lead to a life-changing and potentially life-threatening diagnosis.

After she couldn’t make it up a flight of stairs at her school without gasping for air, Caroline decided to seek answers. Doctors at the office Caroline visited in Korea ran hours’ worth of tests, which showed fluid build-up and declining function of her lungs, and an elevated white blood cell count that they ultimately mis-attributed to tuberculosis (TB). They removed fluid from her lungs, provided her with antibiotics for the TB and sent Caroline on her way.

Caroline had initially planned to spend a week in Thailand for the upcoming holiday break, but luckily her friend convinced her to cancel the trip and instead she headed back home to be with her family. When she got home, Caroline’s mom knew she didn’t seem like herself and when Caroline said she was starting to feel like her lungs were filling with fluid again, her mom brought her to the emergency room. This led to more tests, two surgeries to remove additional fluid buildup around her heart and lungs, and finally a PET scan, which confirmed that TB was not the cause. That’s when Caroline learned that her accurate diagnosis was acute lymphoblastic leukemia (ALL).

ALL is not a common cancer – it accounts for less than half of 1% of all cancers in the United States and the average person’s lifetime risk of being diagnosed is about 1 in 1,000. ALL is a cancer of the blood and bone marrow that can progress quickly if not treated. Risk of diagnosis with ALL is slightly higher in males than in females, and higher in Caucasian patients than in African Americans.2 Most signs and symptoms of ALL are the result of shortages of normal blood cells, which happen when the leukemia cells crowd out the normal blood-making cells in the bone marrow. These shortages show up on blood tests, a PET scan in Caroline’s case, but they can also cause symptoms, including feeling tired, feeling weak, feeling dizzy or lightheaded, shortness of breath, pale skin, infections that don’t go away or keep coming back, bruises (or small red or purple spots) on the skin and bleeding, such as frequent or severe nosebleeds, bleeding gums, or heavy menstrual bleeding in women.3

Her ALL diagnosis came as a shock to both Caroline and her family. She’d been healthy her whole life, and as an adult, she had been living independently, traveling all over the world, and pursuing her dreams of a career in immunology research. In her studies, Caroline had learned about, and even done projects on leukemic stem cells, and this background helped open her eyes to both sides of the cancer care journey.

“It is so different reading papers about a disease as a bystander versus actually being diagnosed with it and knowing it’s your life on the line,” Caroline said. “I feel very privileged to have the background I do to help me understand what’s happening scientifically, and when I don’t, to know how to research and ask the right questions to help me understand.”

Today Caroline is grateful for the foundational scientific understanding of her diagnosis and the open communication she maintains with her doctor – both of which empower her to be an active participant in her care. As she continues to navigate her treatment journey, Caroline hopes to one day be able to re-enter the lab as a former patient and research ways to make a difference in the lives of people going through something similar. Whether that’s participating in studies, sharing her knowledge of the disease, or just being a supportive member of the community, Caroline is committed to ensuring other people living with blood cancers can benefit from her experience.

References

  1. National Cancer Institute. Adult Acute Lymphoblastic Leukemia Treatment (PDQ®)–Patient Version. Available at cancer.gov/types/leukemia/patient/adult-all-treatment-pdq. Accessed June 11, 2021.
  2. American Cancer Society. Key Statistics for Acute Lymphocytic Leukemia (ALL). Available at https://www.cancer.org/cancer/acute-lymphocytic-leukemia/about/key-statistics.html. Accessed June 11, 2021.
  3. American Cancer Society. Signs and symptoms of acute lymphocytic leukemia (all). Available at https://www.cancer.org/cancer/acute-lymphocytic-leukemia/detection-diagnosis-staging/signs-symptoms.html. Accessed August 13, 2021.