My name is Kaela.
I am a Mother, nurse and veteran. I was first diagnosed with synovial sarcoma in February 2020. At that time, I had just finished working in oncology and thought I had a sports injury to my right thigh, however after multiple scans – it was made apparent it was much more serious. I heard those words ‘you have cancer’ … A very rare cancer at that, even as an oncology nurse it was one that I had never heard of. I was diagnosed with stage 3 Synovial Sarcoma.
I then had emergency surgery to remove the tumour that was almost wrapping around my femoral artery.
This was followed by :
Portacath insertion (surgery no2)
40 rounds of the harshest IV chemotherapy anyone can receive (ifosfomide and doxorubicin) – to which I suffered many complications, including grade 4 chemo toxicity, grade 3 mouth ulcers, pericardial effusion, myocardial effusion, febrile neutropenia requiring hospital admissions after all bar two chemotherapy rounds, extreme fatigue, and significant weight loss down to 47kgs.
2 months of radiation therapy 5 days a week (sustaining localised burns and fatigue) I was then “cancer free” for almost two years. I was monitored closely and alternated between a PET scan and CT scan every 3 months. I was on my last scan before they were going to stretch my scans to 6 monthly ….. when I relapsed with bilateral lung metastasis.
I then underwent:
Right side VATS surgery to remove the visible tumours with a wedge resection (surgery no3)
I commenced a different IV chemotherapy (gemcitabine and docetaxael) however this was unsuccessful as when I was scanned 3 months post op, my tumours were already back.
After these findings, I was told I am now inoperable and began an oral chemotherapy called Pazopanib (votrient) to which I take every single day. I heavily advocated for myself to have more surgery – just to try (especially given the genetic testing showed no clinical trials were a match). After pleading my case and advocating to my multidisciplinary team about wanting more surgery (given my healthcare knowledge really helped here) – I was told if I take pazopanib for 3 months and it keeps the tumours stable, that they would consider operating. My 3 monthly scans showed the pazopanib was effective, I begged for surgery once again and they listened. I then had:
Left side VATS surgery (surgery no4) to remove the sole tumour via a wedge resection.
Right side thoracotomy (surgery no5) with lower lobectomy (resulting in a 5 night ICU stay as my left lung collapsed and I required an extra drain for support).
Since then I have continued taking my oral chemo every day and will do until told otherwise. My last scan at the beginning of 2024 showed no evidence of disease. I now work as a nurse in the emergency department. One of my biggest passions is raising awareness for sarcoma. I also love educating about clinical situations relating to oncology and advocating, given my unique experience of being a cancer patient as well as an oncology nurse and now an emergency nurse – which is why I started my Instagram account called Sorareity, where people can hear about my story, education about sarcoma and oncology related conditions as well as finding a community they feel safe in.
