Meet Cheyenne

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Cheyenne experienced benign tumors starting at age 7. They would develop in her knee and leg, grow, and she would have them removed. At age 14 the lumps showed up in her breast, and every six months she underwent a procedure to remove them. After the seventh procedure, her doctor realized something was wrong. Cheyenne tried hormones, birth control, a no caffeine diet, and nothing seemed to work. Cheyenne was fortunate that she had a genetic specialist that was familiar with PTEN mutations and her specialist conferred with her colleagues about Cheyenne’s symptoms. The team agreed that Cheyenne might have a PTEN mutation. Her physician performed a physical examination and blood test, and she came back positive for a PTEN mutation. Cheyenne bravely made an appointment with her breast specialist, and he explained to Cheyenne that if she kept removing lumps from her breast, there would be little left. He also taught her that she was at a high risk for breast cancer, 85% lifetime, and while screening for breast cancer is an option, preventative mastectomies would significantly reduce her risk. She gave this careful consideration praying long and hard about the decision. Cheyenne felt that most people find out their risk too late, and don’t have the option to screen or take preventative measures. After an in-depth discussion with her parents, she decided that preventative surgery was the best option for her. Exactly one week after Cheyenne graduated high school, she underwent the first part of her double mastectomy. Five months later she completed her surgery and reconstruction. She is 22 years old today and goes in for yearly dermatologic checkups often having skin lesions removed.

Despite this adversity, Cheyenne thrives and loves life. She has two precious baby girls. Unfortunately, her daughters have a PTEN mutation. While this is concerning for their family, they feel they have the knowledge they need to provide their daughters the best care.

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The PTEN Hamartoma Tumor Syndrome Foundation was founded to find treatments or therapies for PTEN Syndromes by funding research, providing PHTS education, supporting patients, and by raising awareness. PHTS includes Cowden syndrome (CS), Bannayan-Riley-Ruvalcaba syndrome (BRRS), PTEN-related Proteus syndrome (PS), and Proteus-like syndrome.

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