Hemel Hempstead woman who put her pain down to a sports injury wins national award for helping others with sarcoma

A Hemel Hempstead woman who was diagnosed with a rare bone tumour after months of leg pain that she had put down to training has won a national award for her voluntary work.

Leanne Levitt, 47, was named Volunteer Achievement of the Year at Sarcoma UK's Shining Star Awards ceremony in London on Monday 2 November. The host for the ceremony was popular comedian Angela Barnes.

Leanne, a personal trainer and Ironman athlete, first felt extreme pain in her leg while completing the Ironman 70.3 in Staffordshire in June 2017. She had sensed something was wrong before the race but with a career in fitness she assumed it was a sports injury and did not have it checked. After moving to Zurich, the pain continued and she could no longer walk long distances. She put it down to age or to almost 30 years of international long-distance running.

It was only when she could no longer walk on her leg that she saw a doctor. Within days of an MRI scan, she was referred to a hospital oncology department for two full days of tests and was diagnosed with a giant cell tumour of the bone. Three weeks later, in July 2019, she had limb salvage surgery in which 12cm of her left femur was replaced with cement and a partial bone graft. Leanne has since returned to personal training and built a new career writing educational courses for surgeons, doctors and other medical professionals.

She is now a member of Sarcoma UK's Involvement Network, whose members use their own experiences to help shape the charity's work. This can include reviewing research grant applications, giving feedback on the Support Line and publications, and sharing views with policy makers.

Leanne stepped forward quickly for clinical improvement work, including the Optimal Diagnostic Pathway for sarcoma, a project designed to make diagnosis faster, clearer and more consistent. She has also worked with the charity's policy and strategy team on its State of the Nation review, which recommended earlier diagnosis and better quality of life after diagnosis. As a Health Information Reviewer, she helps make sure the charity's resources are accurate and useful for patients.

Accepting her award, Leanne said: “At first, I started to share my story, but I felt that it wasn't enough. I am very lucky to have come through my surgery and period of disability so well, and that made me want to give something back. I can no longer be an Ironman athlete, but I can turn my attention to my academic skills, and that is what I have been offering to Sarcoma UK. It has been an honour to win this award.”

She thanked her medical team, including her surgeon Professor Craig Gerrand at the Royal National Orthopaedic Hospital, and the trainers at PureGym Hemel Hempstead who are regularly involved in her rehabilitation.

Kerry Reeves-Kneip, Director of Fundraising and Communications at Sarcoma UK, said: “People who have been through sarcoma bring knowledge that no one else can. Leanne has taken her own experience of a delayed diagnosis and used it to improve how sarcoma is diagnosed, how information reaches patients and how we speak to decision makers. Volunteers like her make our work more relevant and more trusted and bring us closer to our mission of making life better for everyone affected by sarcoma. We are delighted to celebrate her achievements.”

Sarcomas are uncommon cancers that can affect any part of the body, inside or out, including muscle, bone, tendons, blood vessels and fatty tissue. There are over100 different subtypes.