Ashleigh's Story

I first experienced pain when exercising in the summer of 2010. I initially visited a podiatrist and physiotherapist which seemed to provide short term relief. My pain escalated rapidly in April 2012, so I decided to make an appointment with a new GP who organized a bone scan that showed a large pelvic mass and following this, a number of investigations in the hospital.

I was told by doctors that I had Ewing’s Sarcoma of my pelvis. This is a cancer that occurs in the bone. The cancer started in my pelvis but had spread through to my spine and brain. I was in an adult hospital and the initial consultant had heard about the Youth Cancer Service with medical expertise of looking after young adults with cancer.

The team had a clinical trial open and although I was older than most patients, my consultant had organized for me to have my treatment here so I had an opportunity of the best chance of survival.

Dr Antoinette Anazodo explained everything to me carefully and clearly so I would understand the course of treatment and knew in detail the steps I would need to take to treat the cancer. The treatment would involve 12 months of chemotherapy as well as surgery radiotherapy and then a transplant. If I went through this, the chance of me surviving was still only 25%.

In May of 2012, I started chemotherapy treatment and received this in Sydney Children’s Hospital under the care of the Sydney Youth Cancer Team.

After three months of intense chemotherapy I was told that the tumour had responded really well to treatment and no active cells could be seen on the PET scan. It was then time to have the operation to remove the tumor. I had the tumour resected and also needed a hip replacement. After the operation I was told that some areas of my pelvic mass had active cells in so I needed to have further radiotherapy to the pelvis. This made me feel very anxious about my future fertility and I was seen by the adolescent gynecology team to discuss options for fertility preservation again.

Chemotherapy was hard but I was lucky to have lots of support around me. My family came to every appointment; they allowed me to make decisions and supported me when making decisions was very difficult. The Sydney Youth Cancer Team gave me appropriate information and support so I could understand my treatment and the effects on my body. I felt supported and trusted the decisions I made.

This has been the longest year of my life. It also happened to be my HSC year. My illness and treatment made me completely unable to study or attend school and having the education counselor available to help me understand my options was invaluable. I celebrated my 18th birthday in an isolation room having my transplant but I have been able to get through the year thanks to the medical and psychosocial support I received by the Sydney Youth Cancer Team. I am a much stronger person and have lots of hopes and dreams which are still positive. I am having some time to recover from treatment but next year I will start training to be a nurse. I would like to help others in the way I have been helped.