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You're the one paying for your health care. It's ok to speak up. What one patient learned about her medical treatment when she found her voice.

By Huntsman Cancer Institute

Nicole Anderson has something to tell you when it comes to your medical treatment: “You’re the one paying for your health care. It’s okay to say ‘I’m not okay with that option’ or ‘I think we need to look into this option.’ Always be an advocate for yourself.”

As a cancer survivor who has been through multiple surgeries, Anderson knows what it means to be an active participant in her own care. But she never could have predicted she would be a 10-year cancer survivor and health care veteran by age 40. Looking back, she remembers how strange it felt to be diagnosed.

“I remember saying to my doctor, ‘I just turned 30 two weeks ago. How can it be cancer?’” she says. “It was like being in the Twilight Zone. It felt like I left my body and was observing things. My husband was crying that night, saying, ‘I wanted to grow old with you.’ That was really hard.”

A year and a half earlier, Anderson had given birth to a baby boy and was at her six-week postnatal checkup when her doctor found a lump in her vaginal wall. It wasn’t painful and didn’t look like cancer in an ultrasound, so her doctor recommended watching it. When the lump started to become painful, she had it removed. The biopsy revealed it was a rare form of uterine cancer called endometrial stromal sarcoma.

Anderson and her husband, Eric, met with Mark Dodson, a surgeon in the Gynecology Cancers Program at Huntsman Cancer Institute. Dodson told them the cancer was low-grade, which meant it was much less aggressive. But it was stage 3, meaning it had spread outside her uterus. She had a total hysterectomy seven weeks later.

Anderson quickly learned to speak up for herself when she felt unwell weeks after the surgery. She was told not to worry—she was still recovering. But she insisted that something was wrong. After some tests, the doctors learned her ureter (the tube that carries urine from the kidneys to the bladder) had been damaged. It took seven surgeries to repair.

Because the lump had been removed from her vaginal wall, Anderson needed several vaginal reconstruction procedures in the following years. While coping with such a rare cancer and the effects of so many surgeries, she wanted to meet other women with endometrial stromal sarcoma. The two women she has found live in other states. They talk by phone but haven’t met in person.

“This cancer is so rare and not many people know about it. That’s why I feel the need to share my experience,” she says.

Anderson’s cancer journey inspired her to go back to school and pursue a career in helping other patients. In 2014 she earned a bachelor’s degree in Health Promotion and Education from the University of Utah, and she is working toward a master’s in the same program. Her dream job? A patient advocate, of course.