The sinister disease that's killing women
With so much focus on breast cancer, the ovarian disease can often be overlooked, with tragic consequences, writes Arlene Harris
HOLLYWOOD actor Pierce Brosnan is mourning his daughter Charlotte, who died last week after a lengthy battle with ovarian cancer. Aged just 42, the mother of two spent the past three years fighting the same disease that also killed her mother Cassandra 22 years ago – she was just 43 when she died.
Because of his high-profile image, Irish-born Brosnan has put the spotlight on this ravaging disease, which affects 350 women in Ireland every year but often goes under the radar because the symptoms can be mistaken for something else until it is too late for life-saving treatment.
In 2010, Anne Murphy, from Tulla, Co Clare, was diagnosed with fallopian tube cancer (which is where genetic ovarian cancers start) and after surgery and treatment is thankfully in remission.
Her sister Grainne was also diagnosed in the same year but because it was not identified as the cause of her illness at an early stage, the mother of one died on Christmas night 2012.
Anne, who has two children and works as an oncology nurse, wants to highlight the importance of identifying the symptoms of ovarian cancer early and highlight the prevalence of inherited risk and the link between cancer of the ovaries and the breast.
"My mother died from breast cancer when she was 43, her cousin died of it when she was 39 and my grandmother when she was 53," says Anne.
"Both Grainne and I had always been aware of our risk of developing breast cancer and the likelihood of us having the BRCA gene (as Michelle Heaton and Angelina Jolie were diagnosed with this year).
"We were both attending breast clinics annually for mammograms, but no referral was ever made for either of us for ovarian screening.
"Now we know that although women with the BRCA gene have an 80-90pc chance of developing breast cancer, they also have a 40-60pc chance of developing ovarian cancer. But while the whole world is supporting the need for breast cancer awareness, very little is made of the ovarian strain of the disease."
So much so that when Anne's sister Grainne began to suffer from pelvic pain and unexplained discharge after the birth of her first child in 2009, no one made the connection to an ovarian problem – despite the fact that her family history put her in a high-risk category.
"A few months after Grainne had her first baby (she was 37 at the time), she was suffering from bloating, pains in her pelvis and vaginal discharge," says Anne.
"She was told that this was normal for a woman after giving birth and she could expect these kinds of symptoms for at least a year after delivery.
"At first it was thought that this was a normal reaction to having just given birth but the problems continued and she was tested for a urinary tract infection some months later. This was clear but the following year the symptoms worsened and she went for a full Well Woman check. These results again did not indicate cancer and she was referred to a gastroenterologist to screen for bowel problems.
"It was a gastroenterologist who referred Grainne for an ultrasound scan as he believed her symptoms were not connected to the bowel.
"Then during an abdominal scan, a growth was spotted on her ovaries and she was referred urgently to St James's Hospital in Dublin – 18 months after her initial symptoms."
During this same year, while Grainne was waiting for a diagnosis, Anne also began to experience similar symptoms and immediately went to see her GP who sent her for a scan – of which the results were clear.
But Grainne was diagnosed with ovarian cancer and although shocked and devastated at the turn of events, Anne was taking no chances and asked for a blood test to further rule out any chance of her having the same disease.
"When Grainne's results came back, I was utterly heartbroken for her," she admits.
"She had wanted to find out what was wrong for so long, and she knew the family history could have been an issue.
"By this point the tumour was so big that she couldn't have surgery straight away and needed chemotherapy to reduce it before anything else could be done.
"I in the meantime had a tumour-marker blood test (called a CA125), which can indicate whether or not there are cancer cells present.
"When the results came back, my bloods were abnormal and I was told that this could be down to various reasons and the test should be repeated in six months.
"I questioned this and got referred to my gynaecologist (who was also Grainne's) who recommended a laparoscopy which would explore the abdomen.
"During this procedure it transpired that my fallopian tube was inflamed so he removed it. Then a few weeks later, it was discovered that the inflammation was cancerous.
"So both Grainne and I were now both diagnosed with ovarian cancer (as it is now thought that genetic ovarian cancers typically start in the fallopian tube) and a blood test at Crumlin Hospital Genetics Clinic confirmed we were both BRCA 1 positive.
"I was referred immediately to St James's for radical surgery, which removed everything connected to the ovaries and put on a course of chemotherapy.
"Both Grainne and I were undergoing chemo at the same time, but tragically her cancer was far more advanced than mine.
"The care we received while we were in St James's was second to none but while I went into remission after my chemotherapy, Grainne never did and when she stopped treatment, the cancer just kept coming back."
The two sisters finished treatment in the autumn of 2010 and while Anne (now 43) slowly recovered, her beloved sister never got a real remission.
By January of 2011 Grainne's cancer had returned and despite almost a year of treatment, Grainne unfortunately died on Christmas night 2012, leaving behind a husband and four-year-old child.
Today the family are still grieving, but would like to make people aware of how dangerous ovarian cancer can be and how so many women continue to go under the radar until it is too late to save them.
"Grainne felt no bitterness," says Anne.
"She said all the medical staff were doing their best, but I believe that the system failed her.
"We have such a strong history of cancer in our family, but there hadn't been sufficient research into the the connection between breast and ovarian cancer (the typical BRCA diagnosis), and in Grainne's case it was too late.
"Cancer genetics is poorly served in this country and despite the BRCA genes being discovered over 17 years ago, little has been developed in this area in Ireland to date.
"Up until this year genetic testing for the entire country was limited to one service in Crumlin – a public clinic was recently opened in St James's and one is planned for Cork.
"However, these clinics are only as good as the referrals that are made – these come from GPs whose patients have to inform of their family history.
"A real concern for me is that I have a cancer diagnosis and a genetic mutation BRCA1 but I don't know where I fit into the medical model which is currently available."
As she has been diagnosed with a cancer Anne is currently under the care of a surgeon, oncologist and medical team.
She is also attending the breast clinic in St James's as her risk for breast cancer is still significant and is under the gastroenterologist for routine bowel screening.
However, there is no one overseeing the medical surveillance of patients with these genetic predispositions to cancer and this is a concern.
"Medical teams are doing their very best in each of their specialities but overseeing people like me is a challenge added to an already very busy workload – and cancer genetics is a speciality of its own," she says.
"I have had cancer but due to my BRCA gene have a significant risk of developing other cancers and need appropriate surveillance.
"But despite being an oncology nurse with over 20 years' experience I find it really challenging navigating the system.
"Having a BRCA mutation or being under surveillance if one is considered 'high risk' requires very specific patient information guidance, support and protocol which follows through from patient to the GP and currently this does not exist. And this is how mistakes are made.
"Hence high-risk families without confirmed mutations risk being overlooked and I'm sure there are many people in Ireland who have lost loved-ones to breast or ovarian cancer before these faulty genes were discovered and are not under appropriate high-risk surveillance.
"This needs to change. We need genetic specialists driving and developing this service fast so that our children (who have a 50pc chance of inheriting this gene) are better cared for then we were.
"Because I work in oncology and was aware of my strong family history of cancer, I pushed until my tumour was discovered, but many people feel afraid to go against the word of their doctor.
"I believe our health is a partnership between ourselves and the doctor – the medical experts are trained to find out what is wrong and treat accordingly but we are the only ones who know how our bodies should feel.
"And if we don't feel everything is as it should be, we shouldn't accept the diagnosis if we believe there is something else wrong.
'Every cancer is worthy of investigation but with all spotlight on the BRCA gene lately, no one mentions the risk of ovarian cancer, which is actually four times deadlier than breast cancer and anyone with the gene has a 40-60pc chance of developing it.
"Before my sister died she said she wanted people to become more aware of this disease – her wish was that her story be told 'even if it saved just one girl'.
"There is a group in Dublin called Supporting Ovarian Cancer Knowledge who set up a website and published leaflets with information for health professionals on how to spot the symptoms of ovarian cancer and I think everyone – both lay people and medics – should inform themselves of the risks and dangers and know how to recognise this disease before it claims more lives unnecessarily."
For more information visit www.ovacare.com www.sock.ie and www.cancer.ie.