Advocate for Yourself - Kaela's Sarcoma Journey

When Kaela began experiencing reoccurring hip pains, she assumed it was due to her busy life, not realising that the pain was synovial sarcoma.

Before her diagnosis, Kaela was working as an oncology nurse in Canberra and was a veteran – having served eights year in military service. She regularly visited the gym to keep up her fitness for the military service, so when she began to experience pain, she didn’t think much of it. “I noticed I was getting hip pain quite frequently, which I put down to military service but then a lump which seemed to pop up overnight appeared in my right thigh and I didn’t think anything of it.” The pain, however, soon became unbearable, so Kaela visited her GP for a cortisone injection, thinking the pain was from a pulled muscle. Her GP sent her for an ultrasound to find where the injection was needed, and that was when everything changed for Kaela.

After the ultrasound, Kaela was sent for an emergency MRI to determine the lump. The scans showed that the strange lump was not just a pulled muscle. Even after the MRI, the staff could not determine whether the lump was a sarcoma or schwannoma, causing Kaela to worry. “I was thinking this whole time what is sarcoma, I had no idea and who gets cancer in the leg? All of the scans were extremely frustrating because you just want to know if you have cancer or not.” The following week after the initial ultrasound, Kaela flew to Sydney for another MRI where she was diagnosed. “I was sitting on a bed in my friends house when I got the email within an hour of the PET saying that I had a high-grade synovial sarcoma that was very large and quite complex as it was almost wrapping around my femoral artery.”

The news shocked Kaela, as she was sure it wouldn’t be anything this serious. Following the diagnosis, she saw the medical team in Sydney, who informed her that she required surgery urgently. “They did say that they were just going to biopsy it to make sure it was 100% sarcoma but when I woke up I had drains coming out of my leg. They had done a whole resection of the tumour.” The medical team determined that the tumour had to be resected immediately.

Although the tumour had been removed, Kaela still faced an uphill battle during her recovery process. She was in for a “long haul” recovery process due to the size of the tumour. Kaela required extensive chemotherapy and radiotherapy, which was a challenging process. “There were a lot of complications, my body ended up with chemotoxicity which almost killed me, I went into heart failure.” However, through all this, Kaela continued with the treatment. “They kept trying to reduce my dose and pull me off it but I refused because it was my life on the line.” Kaela managed to finish her chemotherapy and radiotherapy and was then given a month off before starting radiation treatment 5-days a week for two months. Thankfully, the radiation treatment was easier on Kaela. “I couldn’t work during chemotherapy I was way too sick but I went back to oncology for the radiation, I would go down in my lunch break for treatment.” Finally, after a full-year of treatment, Kaela was cleared of the sarcoma.

Unfortunately, Kaela relapsed in June 2022. Initially, due to the many tumours now in her lungs, her surgeon made the call that she was not eligible for surgery at that time and was placed on oral chemotherapy. Kaela, not wanting to give up, requested another appointment with her surgeon to ask why she wasn’t eligible, where she was told that if the oral chemotherapy stabilised the tumours they could operate. The oral chemotherapy worked, and Kaela was approved for the surgery.

Kaela wants you to be your biggest advocate for anyone going through a sarcoma journey. “Advocate for yourself. Don’t be scared to get a second opinion. By me doing that it has potentially changed my outcome drastically.” Kaela is now preparing for her next operation, which she is very thankful she fought so hard for.