Even now, two years after she was diagnosed with ovarian cancer at the age of 23, Emily Plane cannot remember any early symptoms that marked her out from her friends
Even now, two years after she was diagnosed with ovarian cancer at the age of 23, Emily Plane cannot remember any early symptoms that marked her out from her friends.
‘I had tummy aches but I just thought I was allergic to something,’ she says. The pain below her belly button came and went. And she either had diarrhoea or felt bloated and constipated.
‘I had two friends who were gluten intolerant who had the same symptoms,’ she says. ‘I have yet to come across a group of 19-year-old girls where one or more of them hasn’t self-diagnosed with some kind of food allergy or intolerance.’
When she arrived in London in summer 2017 with a degree in real estate management from Oxford Brookes University, Emily felt she was living her best life. She loved her new job at a high-end property company and shared a flat with a group of close friends she’d known at Uppingham, her boarding school in Rutland.
‘It’s wild now to think I would without fail go to the pub on a Tuesday night after work,’ says Emily. ‘I was new to London and living the dream.’
She put the tummy ache and on-off diarrhoea and constipation, which began that autumn, down to her diet.
But her symptoms didn’t abate. Throughout 2018, the bouts of pain and severe constipation lasting for several days became more frequent.
‘And when I wasn’t constipated, I had bloating and diarrhoea, where I would go to the loo several times a day,’ she recalls.
Emily first saw a GP in February and was diagnosed with irritable bowel syndrome (IBS). The symptoms of IBS, which affects a third of the population, include pain, bloating, constipation and diarrhoea (many patients alternate between the two).
Her GP suggested she try the low FODMAPs diet, which eliminates carbohydrates that are poorly absorbed by the gut, causing gut bacteria to produce hydrogen and symptoms such as gas and bloating.
‘It was so hard to follow — no fruit, no bread or grains, few vegetables — that I stuck to it for about a day,’ says Emily.
‘When the pain was bad I took Buscopan [a remedy for IBS stomach cramps] and I’d be fine for a month or so. Then I’d get constipated and my doctor would give me laxatives.’
When she arrived in London in summer 2017 with a degree in real estate management from Oxford Brookes University, Emily felt she was living her best life. She loved her new job at a high-end property company and shared a flat with a group of close friends she’d known at Uppingham, her boarding school in Rutland
This cycle went on for over a year: Emily believes if she’d seen the same doctor each time, alarm bells might have rung sooner.
‘I had between five and ten GP appointments and each time I was seen by a different doctor, who pushed on my tummy — which was often hard and swollen — and prescribed laxatives,’ she says. ‘It’s alarming now when friends say ‘I feel so bloated’ — I’m like, ‘Just go to the doctor now’. I wouldn’t wish what happened to me on anyone.’
In early December 2018, Emily woke up in agony. ‘I got an appointment with my GP that day but the pain was so bad, I was crying as I waited to see her,’ she says. Yet Emily left with a prescription for more laxatives and a feeling that she was wasting everyone’s time.
At home, she was sick, then fell asleep for an hour. ‘When I woke up my tummy was so swollen I could barely sit up,’ she recalls.
It was a Wednesday, the day Emily’s boss worked from home, so she felt she could take some time off. She got a bus to A&E at Chelsea and Westminster Hospital.
‘Had it been a Tuesday or a Thursday, I wouldn’t have gone,’ she says. ‘I didn’t want to miss work if there was nothing badly wrong with me.’
Emily had blood tests as well as an X-ray and was admitted for more tests, including an MRI. After two days she went home to wait for the results.
Two days later, the hospital asked her to come in. ‘There were four doctors in the room and they drew a map on a piece of paper to describe what they’d found,’ she recalls. ‘They said: ‘We think it might be cancer.’
‘I was totally blindsided. My first thought was for the friend who’d come with me because her mum has had cancer. Then it hit me and I cried — but even then, I didn’t let myself believe it. I kept saying to myself ‘It might be nothing . . .’ ‘
Emily was referred to The Royal Marsden, a specialist cancer hospital. ‘My mum, who lives in Jersey, flew to London to be with me but the appointment was a blur,’ she says.
‘My scans showed a tumour the size of a grapefruit, which they thought was low-grade serious ovarian cancer (LGSOC).’
This rare form of cancer begins in the cells covering the ovaries and fallopian tubes and tends to be found in younger, fertile women.
‘I felt completely numb,’ Emily says. ‘I thought, well, they could be wrong. I had no idea what was ahead of me.’
John Butler, a consultant gynaecological oncology surgeon at the Royal Marsden, scheduled an operation to remove the tumour and confirm the diagnosis.
But Emily came round from her surgery on January 2, 2019 to the news that the cancer had spread much farther than he’d thought, meaning she would need a full hysterectomy. Mr Butler estimated her tumour had been growing for up to a year.
‘I’d been so brave until that point,’ says Emily. ‘When he told me I’d need a full hysterectomy, I became hysterical. All I’ve ever dreamt of is being a mother.
‘I’ve had a list of baby names in the back of my diary for years. Not being able to have children will be the hardest thing to bear.
This rare form of cancer begins in the cells covering the ovaries and fallopian tubes and tends to be found in younger, fertile women. ‘I felt completely numb,’ Emily says. ‘I thought, well, they could be wrong. I had no idea what was ahead of me’
‘The only comfort was knowing I had no choice. My tears wouldn’t change what had to happen.’
In a second operation, which lasted 11 hours, Mr Butler removed Emily’s ovaries, womb and fallopian tubes. Finding tumours also on her bowel, he was forced to give her a permanent colostomy.
‘The biggest predictor of a patient surviving ovarian cancer is removing all the disease,’ he explains, ‘which is why I had to remove Emily’s bowel and couldn’t preserve her fertility.’
The surgery saved Emily’s life but the physical and emotional toll has at times felt unbearable.
‘I came round in recovery and felt this bag on my side,’ she says. ‘I’d been warned that it was a possibility but it was unlikely I’d need one. The mental and physical pain is indescribable. I was so broken, in such utter fear and despair, I didn’t think I could take any more.’
Almost two years on, she cries continually as we talk, still unable to fully process what has happened or what the future holds. Remembering her surgery and the aftermath sends her into a spiral of grief for everything she has lost.
‘To be told you have cancer and are going to have a complete hysterectomy, and then end up with a colostomy bag at 23 . . .’ Her voice trails away. ‘It was just too much. I felt I was being destroyed.’
Through it all, her three closest friends from school, Missy, Alex and Ida, never left her side, taking it in turns to sleep nights at the hospital and going to work the next morning. ‘And they didn’t just support me,’ says Emily. ‘They looked after my mum. It was so hard for her. I wanted to protect her from it all.’
Her biggest worry is still ‘how will my mum cope if I die?’.
After surgery she had six rounds of chemotherapy, one every three weeks, followed by an intravenous drug — bevacizumab — which inhibits tumours’ ability to grow blood vessels, given fortnightly.
Her first round of chemo started on Valentine’s Day. ‘My sixth chemo fell on June 5,’ she says. ‘Two weeks later I celebrated my 24th birthday — and clear scans — by partying till six o’clock in the morning.
‘I was ecstatic but I couldn’t quite breathe out my sigh of relief. The doctors were encouraging, but honest: it wasn’t over. I was out of the woods but not out of the forest.’
After ‘an incredible summer — I was letting off steam from the past six months’, a routine scan in September 2020, just after she’d started a new job, showed two new tumours above Emily’s kidneys. She had an operation to insert small plastic tubes that allow urine to drain, and began taking the oral anti-oestrogen drug letrozole daily.
But just before Christmas, scans showed the tumours had increased in size and spread to her liver and a few weeks ago, Emily underwent more surgery to remove them.
‘Unfortunately, chemotherapy and hormone therapy aren’t as effective for LGSOC as we’d like or need them to be,’ says Dr Susana Banerjee, a consultant medical oncologist at The Royal Marsden. ‘But the development of a group of targeted therapies called MEK inhibitors has resulted in the biggest advance we’ve ever seen in LGSOC.’
The drugs interfere with cancer cells’ ability to divide and grow. A clinical trial of one, trametinib, has shown promising results for the disease — longer survival without the illness worsening.
And although these drugs aren’t yet approved for the disease, during the pandemic the Cancer Drugs Fund has made them available to LGSOC patients to minimise the risk of Covid-19 infection during chemotherapy (it is not clear how long this will continue).
Emily has been taking trametinib for three weeks and finds it grim: ‘I feel totally wiped out,’ she says. ‘Even walking upstairs makes me feel out of breath, my muscles ache, my hair has thinned, I have really bad spots, an upset tummy and no appetite. I would never have thought I would feel this bad from a pill.’
While ovarian cancer is rare in young women, around 300 of the 7,500 women in the UK who have it diagnosed every year are under 30.
Mr Butler advises any woman with persistent non-specific symptoms — abdominal bloating, swelling, feeling full and going to the loo more frequently — that have not gone away for a month or more, to seek further investigation.
‘Don’t be dismissed and don’t dismiss yourself,’ he says. ‘A scan or a blood test may provide answers.’
The ten-year survival rate for ovarian cancer is 35.7 per cent. For women with invasive breast cancer it is 84 per cent — and 99 per cent if it hasn’t spread.
Research and new treatments for ovarian cancer have lagged behind breast cancer, partly because it is diagnosed in fewer women (there are nearly 55,000 new cases of breast cancer a year). But Dr Banerjee is positive about the future of treatment for the five gynaecological cancers (ovarian, womb, cervical, vulval and vaginal).
‘Over the past decade there have been dramatic changes thanks to better treatment, with more patients doing well, living longer than ever before, with a good quality of life,’ she says.
Mr Butler is also keen to point out ‘the amazing treatments coming, which mean we are able to treat ovarian cancer more aggressively than ever before’.
‘I really believe things are getting better all the time,’ he says. ‘I have patients who are disease-free chatting to me about their holidays. Their chances of survival five years ago would have been less than 10 per cent.’
Emily and her friends are trying to raise awareness and vital funds for the Royal Marsden’s research into gynaecological cancers.
One minute Emily is starkly realistic: ‘I have to face the possibility I might die sooner than I want to,’ she says. The next she is dreaming of being swept off her feet before the disease catches up with her.
‘All I want to do is fall in love, get married and have a home, and I’m so worried I won’t be able to,’ she says. ‘At what point on a first date do you tell someone you have cancer?’
She cannot praise Dr Banerjee or Mr Butler enough. ‘They could not have done more, they have been 100 per cent there for me,’ she says. ‘But I have no idea what the future holds.’
To help Emily’s fundraising, go to go to: justgiving.com/give-me-5andonly5