18-year-old Mia was diagnosed with osteosarcoma, a type of bone cancer in April 2023. She has since taken part in several trials since starting her treatment last April.
Mia said: “My advice to someone who is reluctant to take part in research trials, I would tell them to really consider it and think about how many people it may help in the future. For me, the whole process was simple and straightforward, and my nurse was kind, positive and happy”.
Another young person Liam aged 22 with a diagnosis of testicular cancer decided to take part in research because his dad had the same diagnosis when he was his age, and treatments have changed so much since then.
Liam said: “I wanted to do my bit and be part of giving back to improve treatments for the future cancer patients. I would recommend other young people to take part in research studies, read through information and ask lots of questions”.
Speaking on his research experience he said: “I felt like it was my decision. I was given time to make my mind up after being given the patient information sheet, I had the chance to discuss the study with my family and put together some questions we had.
“There was great communication with the research nurse, she contacted me before each visit for the study and she also came to visit when I was on the ward”.
The PROTECT study sponsored by the University of Edinburgh is helping to understand how a cancer diagnosis, treatment, and the age at which treatment occurs impact fertility markers and long-term reproductive health in survivors. By predicting long-term fertility outcomes and detecting hormone-related issues early, the study aims to ensure timely treatment and provide better care for survivors. These insights will assist doctors in offering enhanced care and support to young cancer patients. The study is open for recruitment until 31 December 2024.
Call to Action
To be eligible to join the study, participants must be:
- Aged 13 – 25 years.
- First cancer diagnosis or relapse of same diagnosis.
- Requires cancer treatment with targeted, immunological and cell-based therapies. Surgery, chemotherapy, radiotherapy and bone marrow transplant are permitted if part of treatment or if the initial treatment plan changes
The study involves taking a blood sample before treatment begins, and then annually for three years to test hormone levels. These samples are for research purposes only and will be analysed in the research laboratory in Edinburgh to measure fertility hormones.
For more information or to see if you are eligible to take part, please contact Donna Morgan or The TYA Cancer Research Team