Sarah's Sarcoma Journey

43-year-old Sarah never expected a pain on the right side of her lower back to be as serious as Retroperitoneal Liposarcoma.

In 2021, Sarah began experiencing pains in her lower back during her sleep that were waking her up in the middle of the night. Due to the ongoing COVID-19 pandemic at the time, Sarah was hesitant to go to her GP and dismissed it as women’s health problems. However, the pain began to appear more frequently which required medical attention.

After telling her GP her symptoms, Sarah had her blood tested for inflammatory markers, which returned an alarming result. “The blood tests showed I was anemic, which was the first alarm bell that made me think something was wrong,” Sarah thought when she received the results. She was quickly admitted to the hospital, where she stayed for a week, undergoing X-rays and ultrasounds to attempt to identify the problem. An ultrasound was able to locate a lump on her kidney. At first, they did not think it could be cancer, but her doctor organised a biopsy to examine the lump to determine what it could be. A month after the biopsy, Sarah was told she had been diagnosed with sarcoma.

Like many going through their sarcoma journey, Sarah feared what her sarcoma treatment would involve. “The word cancer itself is scary, so to hear your cancer be called a rare cancer really freaked me out…it wasn’t having cancer itself that scared me the most, it was having a rare cancer”       

Sarah had to undergo 28 sessions of radiation therapy before she could be admitted for surgery. This process was not easy for Sarah, who required extra medical attention due to being severely anemic. “The symptoms and the side effects of the tumour were causing me so many problems, I had probably three blood transfusions before the surgery to prop up my red blood cell count” during her radiation therapy. Sarah’s surgeon moved her surgery forward to relieve her of the severe pain.

After surgery, Sarah was relieved to find her symptoms improved almost immediately. “The miraculous thing is that as soon as I came out of surgery, it was like all the symptoms I had experienced had vanished and my blood slowly began to return to normal.” Sarah experienced pain around the surgery area and was in the high-dependency unit for two nights following the surgery but she felt as though she was lucky to have such a quick recovery.

Sarah wants people going through their sarcoma journey to look after themselves physically and mentally. “It’s hard but try to prepare yourself as best you can for the battle, because it is a battle of your mind and body, and try to stay positive and treasure every day you have.” She strongly recommends joining support groups where available and to be your own best advocate by not being afraid to ask any questions during your journey. She also wants people going through this time to keep your family, friends and faith close – as they’re the ones to get you through the tough times – and that even in the darkest times, there is always a glimmer of hope!

Sarah is now back to enjoying her life as a mum back in Auckland and has now joined ANZSA Consumer Advisory Panel to give a strong voice to consumers within the sarcoma community.