When Carol West was diagnosed with a desmoid tumor, she faced a series of overwhelming challenges—among them, a lack of information about what to expect after surgery. Waking up to find she couldn’t move her dominant hand was a shock she wishes she had been better prepared for. “I wish I would have asked more questions about the expected outcomes,” Carol reflects. “Knowing the best- and worst-case scenarios can make all the difference.”
Carol’s journey has taught her the importance of advocacy. Her advice for those newly diagnosed is clear: “Advocate, advocate, advocate for yourself. Ask questions until you understand. Don’t be afraid to ask again if you still have questions.”
For a decade, Carol fought her battle in isolation, feeling the weight of the journey alone. But everything changed when she connected with a network of allies. “Finding my tribe has been so empowering,” she says. “They’ve supported me, loved me, lifted me up, and given me advice.” Now, as she faces a recurrence, Carol feels more empowered than ever.
She encourages others to seek out support systems, reminding them they are not alone. Organizations like Rein in Sarcoma offer resources and connections for those navigating similar challenges.
Through her resilience and determination, Carol embodies her favorite quote: “She turned her cant’s into cans and her dreams into plans.” Her message is one of hope, empowerment, and the strength that comes from finding community.
You can help patients like Carol find the resources and support they need by making a donation to Rein in Sarcoma here: Donate Now | Rein in Sarcoma. Your generosity will help provide critical research funding, sarcoma education, patient and family support, and a sense of community to those battling sarcomas. Visit reininsarcoma.org to learn more and make an impact today.