Lilly – 14 year LMS Thriver

By Lilly Figueroa

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Lilly Figueroa

If Lilly had to give her LMS journey a title, it would be “Rollercoaster.”

Lilly was diagnosed with retroperitoneal leiomyosarcoma (RLMS) in 2010. Her journey started with a swift ride downhill on the rollercoaster. She had surgery which included her right kidney, and gall bladder removed. Her lower vena cava was cut and spliced. She had intraoperative and wide field radiation for 45 sessions.

She coasted along for seven years until 2017. She had a lumpectomy twice to get clear margins in her breast. She had a bad feeling and got a second opinion at Mayo. Mayo confirmed it was LMS.

Another three years passed until in 2020, she had pain in her thigh. After trying physical therapy, she finally insisted on an MRI scan. This time, the LMS had come back inside her femur and right sacrum bone as well. She had radiation for 15 sessions.

Next, Lilly started temodar for new tumors in her right and left abdomen, one in the lung and a fast growing one on the upper chest wall. She stopped the temodaor in September of 2023, because the abdominal tumors grew and she got a new one in her pancreas and liver.

Mayo has offered Lilly the phase 1b/2 lurbinectedin and doxorubicin clinical trial. She will decide on the trial after her next scan in a few weeks. Lilly also began fasting and seeing a naturopathic doctor.

What helps Lilly get through all the ups and downs? Lilly is an LPN in a nursing home. Her coworkers have been supportive at work. She has also had the support of family, children, friends and her boyfriend. Lilly warns to not be too proud. Letting people help, makes them feel better.

Lilly learned to trust her gut, get second opinions and advocate for herself. Several times, she knew she had a new tumor before they found it. She was glad she listened to herself and went to Mayo.

She also learned that she was a lot stronger than she thought. Lilly encourages others, “Push through… you have no other choice!” She also states, “Doctors are not Gods. They are people like you and me. Don’t be afraid to trust your gut and ask questions.”

If she could do one thing over again, it would be more open and allow more people to help her. “Don’t hold in your feelings to protect people. It’s better to cry with people then by yourself.”

Share your story! If you are an leiomyosarcoma survivor of 7 years or more, contact us at info@LMSDR.org