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New research to help prevent facial disfiguration in children with cancer

Friends of Rosie is funding new research into ways to decrease the risk of facial disfiguration in children with cancers in the head and neck. Says Professor John Hickman, Chair of Friends of Rosie’s Scientific Advisory Board, “As children’s bones and tissues are still growing, current treatments for facial cancers in children can lead to disfiguration and a future of painful surgeries to correct the effects caused by the treatment. This pioneering new study looks to reduce those side effects to provide children with a better quality of life after treatment.”

This study has been welcomed by parents of children who face long and unpleasant surgical reconstruction to give them a proper quality of life. See Emma’s story below.

The project

This research is led by The University of Manchester and The Christie NHS Foundation Trust, in collaboration with Dr Marianne Aznar and Dr Gillian Whitfield lead the project, which is due to start later this year once research labs reopen. Dr Aznar summarises the project’s aims below:

“Radiotherapy is an essential treatment component for many cancers. In children, radiotherapy strongly affects bone and tissue growth. For children treated in the head and neck, especially if only one side of the face is treated, this can result in noticeable disfigurement and asymmetry. Rhabdomyosarcoma tumours located in the head or neck will be the key focus of this study.  Up to 75% of patients treated for head and neck rhabdomyosarcoma will experience some degree of facial underdevelopment resulting in marked facial disfiguration, which can affect quality of life. Research to understand, reduce, and even prevent side effects is sorely needed.

“In adult head and neck cancer considerable effort has been put into deriving the best doses of radiation to minimise the effects on healthy tissue and to reduce patient side-effects. In contrast, our understanding of the effects of radiation on the growing skeleton of a child is insufficient and current guidelines do not allow for slight variations in clinical decision-making.

“Through this project, we want to develop a new method to measure facial asymmetry in children, using the images routinely acquired during follow-up examinations, for example, MR and CT images. By analysing the measurements from these images, we hope to learn exactly how radiation affects bone growth in the face. At The University of Manchester, we are also collaborating with the Division of Dentistry because often facial asymmetry requires orthodontics treatment.

“Ultimately, we hope to enable “smarter” radiation treatments, leading to a decreased risk of disfigurement in the future.”

Emma’s story

Emma Payton, now aged 15, was eight years old when she underwent treatment for alveolar rhabdomyosarcoma, a soft tissue tumour. The tumour was in her masseter muscle in her cheek and wrapped around her right cheekbone. Emma was treated with Proton Beam Therapy, which was successful, but left her with facial disfigurement.

Emma Payton
15 year old Emma Payton

Says Tracey, Emma’s mum, “Emma’s jaw hasn’t grown on the side she was radiated, and she lost a lot of muscle mass on one side of her face when the tumour was operated on. Ahead of her, she has orthodontic surgery to reposition her teeth, jaw realignment surgery, and an operation to remove muscle from her thigh to implant into her face.

“We are truly grateful that Emma’s cancer treatment saved her life and she now has the option of cosmetic surgery. She has several painful procedures ahead of her and she wants to go through with them to improve her life as a young woman and hopefully prevent her from being defined by childhood cancer as an adult. Children with cancer go through so much, so any way to minimise these late effects and to give them the chance to truly get on with living after treatment is essential.”

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Nancy Dykes

Nancy Dykes

Nancy, 11, was diagnosed with rhabdomyosarcoma when she was just 2 years old. She was treated with Proton Beam Therapy (PBT) in Germany but unfortunately relapsed less than a year later. The family were then sent to Germany for a second round of PBT. Although treatment helped to cure Nancy’s cancer, she has been left with lots of lasting effects which will require ongoing treatment throughout her life. Here Nancy and her mum, Antonia, share their story in the hope it will help others, raise awareness, and raise more money for children’s cancer research.

Watch Story
Prof John Hickman

Prof John Hickman

Why I am a Trustee of CCRF
 
I am a relative of the Larkin family and knew Rosie Larkin ( Friends of Rosie, now CCRF) when she had and then died of neuroblastoma, aged six. At that time, I was a scientist and professor at Manchester University, actively working on the problem of why some cancers do not die despite intensive and toxic therapies.  Seeing Rosie during her unsuccessful therapy and then attending her funeral, besides being emotional, drove me to double down on my own research as well as to support the Charity as best I could as a cancer researcher. I spent over a decade as the Chairman of the Scientific Advisory Board of the CCRF, when the Board moulded policies to ensure that funds raised for research into childhood cancers were distributed only to clinicians and researchers who had the brightest ideas that could impact of cancer medicine for children.
 
My role on the Board
 
As a Trustee,  I hope that my many decades of experience in cancer research and medicine can help the CCRF determine where best the funds that are raised can be invested in cutting edge research and medicine. I am also keen that the CCRF brings together UK and international experts in science and cancer medicine to brainstorm on how best to advance the treatment of childhood cancers.
 
My Background
 
I was a Professor of Pharmacology at Manchester University, working on drug resistance in cancer. I then moved to Paris, where I still live, to head cancer drug discovery at a French pharmaceutical company (Servier). I then headed an EU consortium for six years that brought together researchers from the pharmaceutical industry, universities and biotechnology companies, from all over Europe and the UK, to improve cancer drug discovery. I continue to be active in cancer health policy, publishing in the medical literature.
Katrina

Katrina London

Why I am a Trustee of CCRF

I have spent my professional career representing individuals and families affected by the devastating asbestos-related cancer, mesothelioma, which has no cure and for which there are only a limited number of palliative treatments available on the NHS.

I joined CCRF because I wanted to bring my understanding of the need to raise awareness of less well known cancers and passion for the need to secure improved funding for research to children facing a cancer diagnosis.

My role on the Board

I am responsible for oversight of our collaboration agreements with other charities to co-fund research into cures and treatments for childhood cancers. I also manage our challenge events and help with community fundraising. 

My Background

I am a Senior Associate at Irwin Mitchell LLP and specialise in Asbestos Disease Litigation, acting on behalf of victims of asbestos related diseases and their families.  Over the years, I have undertaken a number of fundraising challenges to raise money for cancer research, including a 1000 mile cycle ride from Glasgow to Southampton.   

Carla

Carla Nuttall

Why I’m a Trustee of CCRF
 
I became a trustee of the Children’s Cancer Research Fund because I believe every child deserves the chance to grow up healthy and with everything to look forward to in life. Like many people, I’ve seen the impact cancer can have on families and I wanted to do something that could make a real difference. This started through my work as an ambassador for Cyclists Fighting Cancer, which supported young people and their families in finding strength, confidence, and joy through movement.
 
That experience shaped my understanding of the challenges families face and the importance of community-led support – but crucially, the clear need for that to go hand-in-hand with targeted research and long-term solutions.
 
This is why I’m so passionate about the work CCRF does and proud to contribute to a cause that gives children and their families, the greatest chance of living a life without limits.
 
My Role on the Board
 
I support CCRF’s mission by bringing my experience in brand, marketing, and communications to the board. My focus is on helping CCRF tell its story in a way that resonates with people – whether that’s families, researchers, donors, or the wider public. I work alongside an incredible team to strengthen CCRF’s voice, build trust, and grow awareness so that more children and families can benefit from the breakthroughs we’re helping to fund.
 
My Background
 
I’m the Executive Director of Corporate Affairs and Marketing for The Growth Company, a social enterprise dedicated to helping people, businesses, and places to thrive through its market-leading insight, employment, skills and business support.
My passion is to help the organisations I work with to communicate with clarity, purpose, and integrity. That’s why I’ve spent my career in strategic communications supporting organisations that want to make a positive difference – CCRF could not fit my sense of purpose any better.