Since Tauranga nurse Sharon Fenwick learned she has advanced ovarian cancer she has endured a hysterectomy and surgery to remove her uterus, spleen, appendix, some lymph nodes and chest wall.
Eight months off work to recover and months of “nasty” chemotherapy followed, including a clinical trial she just learnt was unsuccessful.
The 57-year-old, facing a prognosis of three to seven years to live, is telling her story for ovarian cancer month to raise awareness of the symptoms and the need for investment in research to develop a reliable routine screening test that could lead to earlier detections.
“There is no specific screening test at the minute to diagnose ovarian cancer,” Fenwick said.
According to the Ovarian Cancer Foundation, one woman is diagnosed every day in New Zealand, and more women die from ovarian cancer than all other gynaecological cancers combined.
Routine screening was not recommended given there was “no effective screening test” and it would lift the risk of people having unnecessary surgery “without significantly reducing the risk of death”.
However, the development of new blood tests and improving access to ultrasounds for women with symptoms could help improve diagnostic numbers.
‘It was a shock’
In February 2022 Fenwick started having “abdominal pain on and off” and noticed after lunch her “work pants were tight around my belly” even when she had not eaten much.
She said telling her three children, family and friends was difficult.
“Everyone was shocked [and] scared,” she said.
The next week, Fenwick had an MRI scan and was sent to Auckland’s Greenlane Hospital for pre-assessment and surgery.
The planned three-hour hysterectomy turned into a “bigger” five-hour surgery as the cancer had spread to her spleen, appendix, some lymph nodes and chest wall, resulting in a collapsed lung.
After a spell in intensive care, she needed eight months off work to recover – a tough time financially for the divorcee still having to cover her mortgage.
Fenwick said she had been undergoing a chemotherapy clinical trial every two weeks since June but had found out last week it was unsuccessful – the cancer was still in some lymph nodes.
“We’re monitoring that for growth and my markers are climbing again.”
She said ovarian cancer was known as the “silent killer” and understood it was not “usually “diagnosed until the cancer is well and truly developed”.
She hoped a routine early detection test would be developed that would allow women to live years longer.
Learn the symptoms of ovarian cancer
A foundation spokesperson said it was a common misconception general cervical screening tests checked for ovarian cancer.
It was more “challenging” to develop a screening test for ovarian cancer as “ovaries can only be accessed with surgery” and it developed much faster than cervical cancer.
“Researchers in NZ and overseas are working to develop better tests and treatments for ovarian cancer so we hope things will improve in the future.”
The diagnosis process included CA-125 blood tests that check for elevated levels of a specific protein, pelvic examination, transvaginal ultrasound and CT scans. Like many cancers, an “official” diagnosis required surgery.
Foundation general manager Whitney Gernhoefer said it was “so important every New Zealander knows the symptoms of ovarian cancer”.
“Symptoms are often mistaken for other common issues women experience, so ovarian cancer is sometimes overlooked,” Gernhoefer said.
Her messages to women were to “know your body” and that “you are the best advocate”.
“If you feel your medical concerns aren’t being addressed adequately, don’t be afraid to get a second, or third, opinion.”
Patient Voice Aotearoa chairman Malcolm Mulholland said a lack of national guidelines to diagnose ovarian cancer led to patients “receiving differing levels of care when they present to their GP”.
He said more awareness was needed about the cancer, including understanding symptoms such as bloating; eating less and feeling fuller; abdominal, pelvic and back pain; needing to urinate more urgently; bowel habit changes and fatigue.
Cancer Control Agency general manager Nicola Hill said about 260 people were diagnosed with ovarian cancer in New Zealand each year, with about 170 deaths.
Hill said the “five-year survival” rate was about “40 per cent”.
A Health NZ Te Whatu Ora spokesperson said it worked with the agency to “plan cancer care and treatments”.
“This work informs how we prioritise and fund changes and improvements to existing diagnostic procedures and treatment services.”
Symptoms of ovarian cancer
Abdominal or pelvic pain or discomfort
Increased abdominal size or bloating
Bowel habit changes
Eating less and feeling fuller
Needing to urinate more often or urgently
Fatigue
If you experience any symptoms for more than four weeks, see your doctor.