Survival rates are from the past, research is changing my future

Despite losing her mother to cancer, Orla Hyland wasn’t prepared for her ovarian cancer diagnosis, or learning she had the BRCA gene. She tells Emily Hourican about her symptoms, staying positive and being ‘the canary in the coalmine’ for her family

For Orla Hyland, who was diagnosed with ovarian cancer in 2021, the story starts back in 1981. “Our lovely neighbour collected my younger sister and me from school on the last day before the Easter holidays. She was crying when she arrived. She said our mum was in hospital. Mum died on Easter Sunday just over a week later,” she recalls. “We visited her in hospital that morning and stood outside her room, staring in the door while adults panicked. A nurse told us to go outside to the garden and we made daisy chains for Mum while we waited. My tummy knotted tightly that morning and still hasn’t really untied.”

“We knew cancer was the cause of Mum’s death but had no other information and didn’t discuss it, really.

“Our poor dad had to learn how to be both father and mother to nine children. Luckily, he met a really lovely woman and remarried, because I’m not sure we would have survived any more of the chaos but for our stepmother.”

Fast-forward to 2021, and Orla was busy and happy, mother to one child and teaching yoga for mental health. “I loved it, and was getting great feedback. Seeing people leave my class feeling less burdened was wonderful.”

In September of that year, “my knee began to hurt. I rested it and it got better but within a week my hip started to throb and I began to get severe nerve pain in my shoulder. My sacrum was hurting too, and there was something funny going on with my diaphragm. I tried to make an appointment with my GP but there were no appointments for two weeks. So I decided to go to my old GP’s practice where my child still attended. There was a new GP there, and I believe he saved my life.”

Orla saw this GP on Friday, bloods were done, and these came back on the Monday. “I should have known something was up then,” she says wryly. “Instead of waiting for a nearby appointment, he sent me across the city for an ultrasound. As the radiographer moved the ultrasound wand over my body, I could see the blurry picture of my insides on a screen. There was a large tumour on my right ovary.”

Radical surgery

Eleven days later, she had laparoscopic surgery. The hope was that they would remove both ovaries and the tumour but instead, “they closed me up having taken only a biopsy.” It was clear she would need more radical surgery.

This was led by Dr Dónal Brennan at the Mater Hospital. The plan was to remove the ovaries, tumour and any non-essential organs nearby, and to “search carefully through my abdomen for evidence of disease and remove it,” she says. “As I waited for my turn to prep for surgery, my back and hip were too sore to sit and so, for hours, I practised yoga standing in the busy corridor of the Mater.”

The surgical incision ran from Orla’s ribs to her pubic bone. “There were suspicious nodes all over my abdomen,” she says. “On my liver, my kidneys, my aorta, my spleen and wrapped around the outside of my large intestine. The surgery took seven hours and there were seven consultant surgeons present. Afterwards, they were jubilant, telling me they got it all. Feeling like I’d been hit by a bus, I was grateful but definitely feeling less than joyous. This was all less than a month since that ultrasound.”

After surgery came chemotherapy: six rounds of Taxol and carboplatin, along with steroids and a bone marrow stimulant which was “as you would expect it to be — not fun. Long days in a sea of misery. It was a bit like burning from the inside out. Taxol makes you lose your hair. I tried the cold cap, to keep it: 10 hours with my head frozen and it made no difference. Exactly two weeks after my first dose of chemo, my scalp began to ache, and a couple of days later the hair came out in clumps.”

She also suffered with nausea and fatigue. However, “possibly the most awful and startling fallout”, she says, was what happened next.

Genetic testing revealed that Orla had the BRCA gene. BRCA is a genetic mutation that multiplies your risk of breast cancer and ovarian cancer as well as prostate cancer, pancre

Being diagnosed with the BRCA gene meant that my siblings and my child had a 50:50 chance of also being BRCA positive. Illogical I know, but I felt I had brought this down on them all’

atic cancer and melanoma. “Me being diagnosed meant that my siblings and my child had a 50:50 chance of also being BRCA positive. Illogical I know, but I felt that I had brought this down on them all.”

Of those in her family who have so far been tested, “most are positive. My younger sister tested positive.” As soon as surveillance on this sister started, an early breast cancer was found. “She had an oophorectomy (ovaries removed) when she was getting her lumpectomy. My mother, me and my younger sister were all aged 50 when we were diagnosed.”

Orla’s cancer was quite advanced when discovered — something that is sadly typical of ovarian cancer, which has symptoms that can be missed. Looking back, she says, “I might have spotted symptoms earlier. I may have been eating less and have felt full earlier but, being a bit of an emotional eater, I would have been happy to have been eating less. I don’t remember abdominal pain or changes in toileting [common symptoms, see sidebar] but if I had, would I have put it down to ovarian cancer? I doubt it. Bloating? I didn’t feel any more bloated than usual.”

Throughout her treatment, she says, “I made sure to avoid any googling of my disease. But one day I saw a statistic that said I had a one in nine chance of surviving five years.”

That shocking statistic reminded her that “ovarian cancer survival rates are still low but I remind myself that all those stats are taken from the past and that the present and the future look different because of the brilliant research going on in labs in Ireland and all over the world. One great thing about cancer — weird, I know — is how many amazing people are wholeheartedly researching new routes to a cure.”

At the moment, three years on, she is “feeling good. I am grateful to have a brilliant oncologist in whom I feel great confidence. Initially, I didn’t, and I moved, something I would recommend. I’m hoping I’ll be finishing pretty heavy drugs in July and will start to feel great again.”

She is both conscious and appreciative “of the patients who went before me; the ones who didn’t really have a chance [because treatment wasn’t advanced enough]. They have all con

‘Ovarian cancer survival rates are still low but those stats are taken from the past — the future look different because of the brilliant research’

tributed to my continued survival.”

Cases of ovarian cancer in Ireland are predicted to increase by 80pc by 2045 (from 407 cases in 2015 to 731 in 2045), which is very concerning.

Having met some of the scientists working towards better diagnostics and more targeted treatment, Orla believes that “by supporting them, I feel confident that we’ll be able to manage these cases more gently and more effectively.” Because it isn’t only about survival, it’s also about quality of life.

“I am so grateful to my child, my wider family and friends and to all the health care workers who have helped me through this harrowing phase in my life,” she says. “I’m grateful to have the opportunity to move on to the next phase. And, having been the canary in the coal mine, I am hopeful that no one else in my family needs to experience what I have, as they have been warned in advance.”