Young Women With Ovarian Cancer Symptoms Struggling To Get Diagnosed

New Zealand Charity Cure Our Ovarian Cancer is leading a global campaign to encourage awareness of ovarian cancer in younger women.

Ovarian cancer is typically thought of as an older women’s disease but it can affect women under 45. Research has found that younger women are more likely to experience delays in diagnosis.

In New Zealand, one in eight women are diagnosed under the age of 45. In women aged 20-44 years it remains the 5th most common cause of cancer death.

Cervical smears do not detect ovarian cancer. The two main tests for ovarian cancer are a CA-125 blood test and an ultrasound. CA-125 is often the first test but it’s more likely to be normal in younger women. However, in several regions of the country women are unable to access ultrasounds if their CA-125 blood test is normal.

Cure Our Ovarian Cancer founder Jane Ludemann says “this is really concerning. In contrast to better researched types of cancer, the survival of most types of ovarian cancer is poor unless it’s found at stage 1 (when the cancer is contained within the ovaries). That’s an incredibly narrow window for early detection.”

Cure Our Ovarian Cancer submitted Official Information Act requests to District Health Boards (DHBs) to assess ultrasound wait times for women with ovarian cancer symptoms. Of the thirteen DHBs that responded, of women with a normal CA-125 result, only seven would accept a referral for someone younger than 45 with one month of symptoms. While two (Hawkes Bay and Northland) indicated they would not accept the referral even if symptoms lasted three months and were progressive. While another DHB (Mid Central) indicated they would accept the referral but women would have to wait up to five months for an appointment.

“There’s no doubt in our mind that these delays are costing lives.” Ludemann says

Christchurch Gynae-Oncologist Associate Professor Peter Skyes says “Ovarian cancer is rare in young women and difficult to identify. However it should remain part of the differential diagnosis in women presenting with a range of pelvic and abdominal symptoms.”

Symptoms of ovarian cancer can include bloating, eating less and feeling fuller, abdominal/pelvic/back pain and bowel habit changes among others. Ludemann says the key message is that changes that persist over two or more weeks should be discussed with a doctor, regardless of age.

For Ludemann, this is personal. She experienced over two years of misdiagnosis. Her cancer was only found through emergency surgery due to complications from cancer growth. She was just 32. Her CA-125 was well within the normal range when she was diagnosed’. “My cancer had just spread. A few months earlier and I might have been ok instead of being told I likely have five to fifteen years left to live.”

Ludemann says these delays are all too common and through Cure Our Ovarian Cancer she hears about them all the time. “I don’t think you can look at any age group and say we are doing a good job at diagnosis, but for younger women it’s particularly tough.”

Within New Zealand Cure Our Ovarian Cancer focuses on improving outcomes for wahine with ovarian cancer through education, advocacy and support, and research. The charity also raises funds overseas for international research partners. Their international efforts focus on a rare, under-researched type of ovarian cancer which affects younger women called low-grade serous. Which is why their World Ovarian Cancer Day Campaign this year is focusing on ovarian cancer in young women. The charity has been donated billboard space in New Zealand with support of Go Media, and overseas in New York, the United Kingdom and Canada as part of their campaign.

“The campaign is about catching cancer early, particularly in young women. If we can help one woman to think about a symptom she’s been shrugging off and encourage a diagnosis, we’ll have done our job. We hope women will share this with their sisters, mothers, and friends to hopefully avoid the pain I’ve gone through.”

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