A woman diagnosed with a rare cancer at the age of 14 has spoken openly about her experience, including the intensive treatment she underwent and a subsequent breast cancer diagnosis. Claire, who now serves on Cancer Research UK's Children and Young People Insights Panel, shared her story in an Instagram Q&A with the charity.
Claire was diagnosed with embryonal rhabdomyosarcoma (ERMS), a rare childhood cancer that first developed in her face before progressing to stage 4 in her lungs. ERMS is the most common form of rhabdomyosarcoma, a soft tissue sarcoma arising from skeletal muscle cells. It predominantly affects children and teenagers, and can occur in the head and neck, bladder or genital area. Survival rates have been improving with multi-modal treatments.
Describing her treatment, Claire said: "So the treatment for that cancer was incredibly intensive, a year's worth of chemotherapy followed by radiotherapy to my face and chest." Years later, at age 32, she experienced concerning symptoms and was diagnosed with breast cancer. She added: "At age 32, I had some concerning symptoms and subsequently received the diagnosis of breast cancer."
Now contributing to research strategies through the Cancer Research UK panel, Claire said: "It's wonderful to see how the side effects of treatment and quality of life is considered. It's not just about surviving cancer, it's about thriving, really, after a cancer diagnosis that the charity is placing at the forefront of what it aims to do. And being able to share my voice and ideas around those research strategies and developments is incredible."
Cancer Research UK notes that knowing the type of rhabdomyosarcoma can help determine the best treatment, which may range from surgery to chemotherapy. The charity acknowledges that coping with a rare cancer diagnosis can be especially difficult, but understanding the condition and its treatment can help patients make decisions and cope. It advises anyone worried about symptoms to book an appointment with their doctor.
More than 420,000 people are diagnosed with cancer each year in the UK, according to figures referenced in the report.
