Ovarian cancer: ‘I don’t know what stage I was at. I was afraid to ask’

‘I have reached retirement age and that is something I did not think I would achieve,” says Joan Moore, who retired last week. She was 54 when she was first diagnosed with ovarian cancer.

“My tummy was swollen and I had a bit of pain,” says Moore. She suffered recurrences in 2010, 2011 and 2013. The Cork woman goes into hospital every three weeks for infusions of the targeted therapy that cuts the blood supply to the cancer and keeps her healthy.

“I appreciate what I have. I have been luckier than a lot of people I met along the way,” Moore says.

Ovarian cancer is notorious as a “silent killer”. Symptoms are difficult to detect, which means it is often at an advanced stage by the time it is diagnosed. “I don’t know what stage I was at. I was afraid to ask,” she says.

When she was diagnosed she, like many fiftysomethings, was busy looking after elderly parents, holding down a job and caring for her own family.

When Moore went to the GP, he insisted that she go straight to hospital for tests and scans; she was then referred to a gynaecology oncologist, who told her she had a huge cyst that needed to be removed, and after a few surgical procedures she was diagnosed.

June Feeney says she is a lucky Cork woman. She believes her daughter Niamh saved her life: before she was born.

Feeney was 28 and pregnant for the first time when she became ill. For a long time she attributed her severe abdominal and pelvic pain to pregnancy, even when it became so bad that she could not sleep at night, or drive.

She was constantly reassured that her scans were fine and her baby was doing well. Eventually, in January 2009, a few weeks before Niamh was due, the pain became so unbearable that she was admitted to hospital and a “thorough” scan showed a huge mass outside the womb. Feeney had a Caesarean section nine days before her due date and during the surgery a tumour “almost as big as my baby” was removed. Four days later, doctors confirmed that she had ovarian cancer. She was in shock.

“It was a really happy time because we had a baby girl but, at the same time, I was being told I had ovarian cancer. I did not even know there was such a thing. I had never heard of it,” she says. “Even though I was in the early stages, the tumour had grown very large because of how pregnancy had affected my hormones. Niamh saved my life.”

Juliette Casey’s sister Emer was 28 when she died in June 2006, four months after being diagnosed with ovarian cancer. Her family, friends and colleagues at Mathesons solicitors were so horrified that the cancer went undetected until it was too late that they set up the Emer Casey Foundation in a bid to boost research, awareness and patient care.

Juliette, an advocate (barrister) based in Scotland, agrees with June Feeney that it is a “forgotten cancer” that does not get the same attention as breast cancer or prostate cancer. To date the foundation has raised €800,000, and is supporting the research of the Discovary consortium, which is investigating how proteins can predict the presence of ovarian cancer.

“The work on biomarkers is groundbreaking,” says Juliette, who urges women to demand further investigations if they experience such symptoms as bloating, abdominal pain or digestive issues.

The Emer Casey Foundation is also campaigning to have guidelines circulated to every GP in the country so that they will be alert to the symptoms and aware of the need to act quickly.

According to the National Cancer Registry, 276 women in Ireland die of ovarian cancer every year, and 360 new cases are reported annually.

“Some people think that a smear test can detect ovarian cancer, but it doesn’t,” says Feeney. “You have to listen to your own body and advocate for yourself.”

She is one of the cofounders of OvaCare, one of three charities dedicated to supporting women and their families, and raising awareness of the symptoms and the need for research.

Like Sock (Supporting Ovarian Cancer Knowledge) and the Emer Casey Foundation, OvaCare wants women to know that early diagnosis can make the difference between life and death.

“We hope it gets more attention. Angelina Jolie helped when she spoke out about her experience,” says Feeney. Since the actor revealed that she had had surgery to prevent ovarian cancer, attention has focussed on the importance of a family history of breast or ovarian cancer, on either side .

“Emer had just qualified as a solicitor. She had her whole life and a bright future in front of her,” says Juliette Casey. “But things are more positive now than they were in 2006. We just want to keep letting people know about this cancer.”