This month marks one year since we said goodbye to our vibrant, loyal and unforgettable Amy – and sadly she was only one of 1,068 beautiful women Australia lost in 2020.
Amy was only 33 when diagnosed with the rarer sub-type Low grade serous ovarian cancer, which afflicts women in their 20s through to 50 and has a frighteningly poor survival rate. Despite her oncologist and medical team's best efforts and the loving care she received from her chemo nurse angels at Wyong and Gosford hospitals, Amy passed away a few years later.
Amy found valuable support through connecting with other young women through Ovarian Cancer Australia’s Younger Women's Network. These women could share and support one another during a frightening, lonely and misunderstood time of their lives. Many people might now relate to this, after experiencing the isolation of COVD 2020. Amy tearfully watched as she lost one by one, her small family of low grade serous friends and was determined to raise funds for better awareness and outcomes for this most cruel of diseases.
Amy was the face of OCA’s Dry July campaign last year, and the outpouring from her loss and the loss of so many other beautiful women, resulted in the most outstanding fundraising campaign. If you are thinking of fundraising, participating in Dry July or just sharing awareness of ovarian cancer, Amy and her teal community thank you.
We are so very, very proud of our girl!"
It was October 2016, Amy was working long hours in her new job in hospitality. She was finding herself constantly exhausted despite sleep, looking drawn with weight loss and unusually for her, having to take repeat antibiotics for tonsillitis and other infections; her immune system seemed to be struggling.
Amy had also been suffering symptoms for many years that had been explained away by treating doctors as Irritable Bowel Syndrome. Bloating, bowel issues and a debilitating, unexplained stabbing abdominal and right ovary pain which no medications could ease. She woke one morning to find her abdomen had expanded alarmingly, looking like she was quite pregnant. Thus set in motion tests including a pregnancy and transvaginal ultrasound and ending in Wyong emergency. The intuitive treating doctor explained while tapping, that her pelvis and abdomen was filled with a fluid called ascites. Despite gynaecologists finding nothing suspicious in both the ultrasound and CT scan, the doctor remained unconvinced that Amy's symptoms were not of gynaecological origin.
Amy had a 4 day stay in hospital where she endured what proved to be unnecessary, invasive endo and colonoscopies while awaiting the results of a biopsy. A young doctor delivered the shocking news, Stage 3 High Grade Serous Ovarian Cancer, she would need to see a gynaecological oncologist surgeon at Royal North Shore where she would have a complete hysterectomy.
A week later the surgeon explained in addition to the hysterectomy, because the cancer had spread out of the pelvis, he would have to do a debulking, moving her organs aside while removing nodules. He also gently explained that combined with 16 rounds of chemo that she only may respond, but that the cancer would come back. Because it was rare in someone so young, she was only 33, she probably carried the BRCA 1or 2 gene mutation connected to both breast and ovarian cancer. Subsequent family history and gene studies of her tissue showed Amy had neither BRCA or any the known 30 related gene mutations to ovarian cancer, her cancer was a puzzle and its reccurrence even more so, she passed without knowing what caused this to happen to her body.
This was only the beginning of Amy's complicated journey. Surgery discovered that her ovaries had indeed been the cancer source and subsequent testing of removed tissue, showed she in fact didn't have High Grade Serous, but Low Grade, a rare form affecting only 9% of diagnoses and mainly young women.
Reading and equipping herself with knowledge on her disease, Amy was dismayed to find that the first line chemo treatment was over 3 decades old. Studies showed that despite an initial response to chemo, the cancers return always came back resistant to further treatment. Research grants for new immuno treatments targeted high grade BRCA patients, sadly very little research andfew trials were available or applicable to Amy.
Many friends enquired whether a pap smear could have picked up her disease earlier. This was why Amy wanted awareness of her disease; she was vigilant with her cervical screening (formerly known as pap smears) and very in tune with her body. Cervical screening is totally unrelated and there is no early detection test available. Amy became passionate about funding, hoping that one day an early detection test is found, preventing the tragedy of losing so many beautiful women.
Sign up to Dry July and make a difference for people affected by ovarian cancer.