An Innocuous Symptom
Amanda Warrington discovered blood spots in the toilet on a Monday morning in 2018. Although it may be a sign of one’s period, for Amanda, it’s been a long time since she had hers.
After doing a google search of her symptoms, this odd sight prompted her to book a vaginal ultrasound. Despite her doctor’s hesitation to give her the ultrasound, Amanda was determined to investigate this seemingly innocuous symptom. She knew her body better than anyone else.
As her intuition suggested, upon going through the ultrasound, the nurse discovered a large mass and urged her to make an appointment to see a gynaecological oncological surgeon as soon as possible.
You cannot have a diagnosis like this until after surgery and the lab tests come back. One of the major issues with ovarian cancer is that there is no diagnostic test. After reviewing the results of the ultrasound, and consequent tests the surgeon suggested that Amanda had ovarian cancer and recommended that she should have an operation which was booked for the following Tuesday. Following surgery, Amanda was diagnosed with stage 2B Epithelial, high-grade serous ovarian cancer. She also discovered that she had a hereditary BRCA2 gene mutation which also significantly increases the risk of breast and pancreatic cancer."I don’t have children, so there was no thought of passing it on. The BRCA2 gene was passed down from my mother’s Ashkenazi Jewish side and no family members, that I know, on that side have cancer so I wasn’t distraught. There is more to this story but it's not necessary to include it here."
“I called my doctor on the Friday afternoon of the ultrasound in shock. She gave me the name and number of a gynaecological oncologist surgeon, which I called immediately and left a message hoping they’d get back to me as soon as possible. After that, I remember calling my aunt, my closest relative, and crying uncontrollably at the bus stop while waiting.”
Luckily, the surgeon got back to her on Monday, booked an appointment for Wednesday and the operation was set for the following week. She started chemotherapy six weeks later.
Realities of Living as an Ovarian Cancer Survivor
Amanda remembered how alone she felt when battling ovarian cancer. Unfortunately, she doesn’t have immediate family around to advocate on her behalf.
“I am not married, I don't have children, my parents are passed away, and I don't have any siblings, so I have had to make decisions to the best of my ability alone. However, I have good friends, and my aunt who have been very helpful in attending appointments with me.”
Thankfully Amanda has remained recurrence-free since her diagnosis almost five years ago, and she feels optimistic about the future. However, she still struggles with the aftermath of her cancer operation. “I’m very concerned about small bowel obstructions that have occurred since the operation due to internal scarring from that initial operation. Bowel obstructions are debilitating,” she recalls. “I have just had a major operation to remove and repair part of my bowel. I was admitted to hospital on Christmas day last year for the second year in a row.”
Educating Future Doctors and Nurses
Experience is the best teacher for educating our next generation of health professionals about ovarian cancer. Although medical and nursing students know the facts and figures of gynaecological cancers, they often don’t hear the real human stories behind them.
Amanda signed up as a volunteer for ANZGOG’s innovative education program, Survivors Teaching Students (STS), to share her ovarian cancer story.
The program gives her the opportunity to teach medical, nursing and allied health students about detecting ovarian cancer symptoms to reduce delays in diagnosis, the importance of good health communication and compassionate care.
“I believe in what we do at STS, in talking to the students; we can make a difference in the lives of women and their families,” Amanda said.
“While I was in the hospital, I felt the need for a patient advocate and to me, what we do at STS is patient advocacy. We are telling students what it feels like to be a patient and making the disease personal and real for them.”
Around 1,800 Australian women are diagnosed with ovarian cancer every year, and less than half will survive five years. The disease is often diagnosed at an advanced stage with no early detection or screening tests.
“Alongside my fellow STS volunteers, I have heard the most horrendous stories of misdiagnosis and poor treatment. We need to turn this around because, in most cases, it is avoidable with proper information and education.”
Renewed Hope for Survivors
Amanda saw firsthand how the program changed the lives of survivors and continues to work as an STS Regional Coordinator to share her story with the next generation of doctors and nurses.
“STS saves lives. We help student nurses and doctors recognise ovarian cancer symptoms and make the disease real for them. Our carers tell them what it is like to have a loved one diagnosed and how that affects the whole family. All of us know that we are making a difference in the lives of others and, for that reason, continue to share our story no matter how difficult it can be.”
Amanda is one of 100+ volunteers sharing their stories through ANZGOG’s STS program across Australia and New Zealand. Thousands of students are engaged in STS sessions each year to learn about ovarian and other gynaecological cancer symptoms, risk factors, the pathway to diagnosis and the importance of good health communication from people with lived experience. The sharing of these powerful stories is making an impact on the lives of women diagnosed in the future and is also an incredibly rewarding experience for STS volunteers.
The program has given Amanda renewed hope for the future and has given her life a meaningful purpose – a truly inspirational story of a patient turned survivor.
