Sadly, Amy passed away in late May. She is remembered fondly by the OCA community for her warm and wise words for other young women experiencing ovarian cancer and dearly missed by her beloved family and friends.
It is an honour that Amy was chosen as the face of your Dry July campaign this year. Amy's passing only a week ago makes it even more poignant that her message is heard.
Amy was a staunch advocate for Ovarian Cancer Australia. She raised funds to help continue the programs from which she gained such benefit.
The pilot Young Womans Network enabled Amy to connect with other young women. They would listen, share, advise & truly understand only what they were going through from each other.
Amy would be extremely humbled that she has been recognised for being the generous, compassionate & courageous woman she was, we are so very, very proud of our girl!
Amy's story - 1st chapter
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 & unusually for her, having to take repeat antibiotics for tonsillitis & 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 & a debilitating, unexplained stabbing abdominal & 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 & transvaginal ultrasound & ending in Wyong emergency. The intuitive treating doctor explained while tapping, that her pelvis & abdomen was filled with a fluid called ascites. Despite gynaecologists finding nothing suspicious in both the ultrasound & 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 & 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 Gyno 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 & ovarian cancer. Subsequent family history & 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 & its reoccurrence 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 & 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 & mainly young women.
Reading & 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 & few 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 pap smears & very in tune with her body. Pap smears are totally unrelated & 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.
This was just the beginning chapter of Amy's story.
Honour Amy and help raise funds to continue running our Younger Women's Network by participating in Dry July.