Cancer research: how my shared sarcoma experiences could benefit others

Maria Onasanya says her sarcoma journey taught her the value of being involved in research

Clinical trial coordinator Maria Onasanya describes her experience of sarcoma, which has taught her the value of patients becoming involved in research

Picture shows Maria Onasanya (second right) and Rachel Taylor (third right) with researchers from the Brightlight study on cancer in young people and a patient representative.
Maria Onasanya (second right) and Rachel Taylor (third right) with researchers from
the Brightlight study on cancer in young people and a patient representative

I was 14 years old when I was diagnosed with osteosarcoma in my left leg in 2008. It required surgery to remove the bone from my hip to below my knee and replace it with a metal prosthesis. Chemotherapy was also needed. I relapsed in both lungs in 2010, needing surgery on my lungs and chemo.

The impact sarcoma has had on my life is indescribable – I went from being an aspiring athlete, full of life and energy, to basically having to relearn how to walk and complete simple tasks safely again. Coming to terms with never being able to run – at least not like before – was mind-blowing.

Athletics was my life back then and all I knew and was good at. I had to find myself again, redirect my passion and hobby, and come to terms with my new body while making necessary adjustments and improvements.

Rare form of cancer ignited a passion for research

Yes, I still deal with constant body pains, my knee joints unlocking, but every day is a testimony that I overcame something that tried to take me down.

Being diagnosed with sarcoma has also opened up a new community and a life I thought existed just for older people. It has helped ignite a passion for research and helped me understand the importance of speaking up and sharing your experience, because you never know who it might help.

Now, at the age of 25 years, I have just secured a new role at The Christie in Manchester as a clinical trial coordinator and I’m looking forward to it.

I have been a patient representative in the Sarcoma UK-funded sarcoma assessment measure (SAM) study.

Sarcoma-specific patient-reported outcome measure

The chief investigator in the study, Rachel Taylor, won the Excellence in Cancer Research category of the 2019 RCNi Nurse Awards.

The study led by Dr Taylor, director of the Centre for Nurse and Midwife Led Research (CNMR) at University College London Hospitals NHS Foundation Trust, is producing the first sarcoma-specific patient-reported outcome measure (S-PROM) for this rare form of cancer.

‘Communication between patients and healthcare professionals is central to outcomes’

I would highly recommend other patients to become involved in research where they can.

Communication between patients and healthcare professionals is central to outcomes and maximising quality of life, but it is not always as good as it could be.

Maria Onasanya

The S-PROM is extremely important as it will help build better communication between patients and clinicians in this restricted cancer group, and the results of the SAM study can hopefully be rolled out on a wider scale.

My experience can help structure the research framework

Being so young when it started, I don’t think I understood fully the deep and long-lasting impact sarcoma would have on my life, but I was lucky in that my consultant was always straightforward, from the beginning, with me and my family regarding my treatment and possible outcomes and around any procedures that I needed.

My role in SAM as a patient representative means I can share my cancer experiences and help structure the research framework, including how the questions are asked and the possible impacts they could have.

It has been an amazing experience being a part of this project. The research team has been very supportive and accepting of my input, however little it might be. This is great and encouraging, and it’s why I would 100% recommend patients join a research team if the opportunity arises. No input is too little and every bit of information provided is useful in some regard.

I don’t have a medical degree and I might not know all the medical jargon, but the research team still makes me feel included and I get carried along with all the useful information like the rest of the team.

Research is a core function in the NHS and the only way it will get stronger and generate more viable results will be if more patients know and understand the importance of their involvement with their research teams and getting their voice out there and being heard.

No one understands the cancer journey better than those who have actually been through it.

Maria Onasanya is a clinical trial coordinator at The Christie NHS Foundation Trust in Manchester

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