When Angela Bonning woke up in hospital after an operation to remove her gallbladder, she knew instantly that something was terribly wrong.
Her husband Peter, who wasn’t due at the hospital until four hours later to take her home, was already at her side and shaking as he held her hand, while a group of medics with grave expressions on their faces were gathered around her bed.
‘My surgeon turned to me and said: “We’re very sorry but we’ve found several tumours on your liver.” I was in shock and couldn’t really take it in,’ recalls Angela, 58, a store demonstrator who lives in Orsett, Essex.
Breakdown: Angela Bonning was diagnosed with liver cancer and was told she had only weeks to live
The surgeon had discovered white spots on her liver — a characteristic of liver cancer — so had not gone ahead with the gallbladder operation.
Nearly 4,000 cases of liver cancer are diagnosed every year in the UK. Most cancers are advanced by the time they are found and only 20 per cent of patients survive for a year or more, while just 5 per cent live for at least five years.
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On that day in October 2007, before she came to, doctors at Basildon Hospital had told Peter they didn’t think Angela would survive past Christmas. He begged the doctors not to tell his wife the condition was terminal because he worried how she’d cope and didn’t want her to lose hope.
That night, a distraught Angela asked to stay in hospital because she couldn’t face telling her friends and family, especially her son Louis, then aged 19, that she had cancer. Peter, an electrician, spent the evening making emotional calls to Angela’s loved ones, explaining how terrible her prognosis really was.
Despite being kept in the dark, Angela realised things weren’t looking good.
‘The next day, when I came home, I knew my sister in Australia was coming to see me. Friends and relatives sent flowers and visited me in tears, while the hospital had mentioned a Macmillan cancer nurse coming round, so I put two and two together.’
The next few weeks were a blur for Angela as she attempted to accept the situation and underwent numerous tests, at the same time making plans for her final months.
‘I wanted to plan family gatherings and a holiday to Florida,’ she says. ‘I decided I’d like a colourful funeral like my mum’s had been earlier that year, and I planned to write letters to my close friends and relatives to say goodbye.
‘I tried to put a brave face on for my son. I couldn’t face talking to him about my illness and we both almost pretended it wasn’t happening. Even so, I could see he found it traumatic.’
Two weeks later, she got the results of the biopsy taken by her surgeon. ‘The doctor got up, embraced me and said: “We’ve got some very good news — you haven’t got cancer and you’re not going to die.”
‘My husband nearly passed out he was so elated, and we were all in tears. We celebrated with a party. Everyone was so happy but I felt blank, like I wasn’t really there. After Peter told me what the doctors had said, I went over the diagnosis continually in my head. It was surreal.’
Angela found bereavement counselling helpful after suffering from depression
Angela’s experience is an extreme example of something that happens to thousands of people every year. While they’re eventually told they’re healthy, many struggle with the emotional fall-out of thinking they were going to die.
This is often seen in women who have false-positive mammogram results (which happens to 7,000 women every year in Britain), and in men with false-positive prostate cancer tests (one in eight of men tested).
A study published last month in The Annals of Family Medicine found cancer scares can cause psychological distress for years.
In a three-year study, Danish researchers compared the feelings of women who’d had false-positive mammogram results with women who had cancer and those who didn’t. The study found those with false-positive results reported the same poor sleeping habits, loss of appetite, anxiety and anger as those with cancer, even after discovering they weren’t ill.
‘Having a false alarm is like a life crisis — the women compared it with a divorce or losing a relative,’ says John Brodersen, associate research professor at the University of Copenhagen, who led the research. ‘It threatens their perception of their own health. These false screenings and misdiagnoses bring up your fragility — you can see the end of your life.’
While some get over it quickly, for others it can leave a mark for the rest of their lives, says Professor Brodersen, who is also a GP. ‘Consequently, they go to their doctor more frequently because they’re so scared.
‘I often hear of people making big life changes while they think they may have cancer — taking early retirement or selling their house to be closer to children and grandchildren, for example.
‘These situations can strain relationships. The person may be anxious, crying, disturbed, unable to sleep and irritable due to worrying they have a life-threatening illness. But with a sympathetic partner, they can grow closer.’
Joyce Robins, co-director of Patient Concern, says: ‘There are lots of false-positive mammogram results and they can have serious psychological effects. I personally know several people left terrified thinking they could have cancer when there’s nothing wrong.’ A cancer diagnosis can challenge beliefs about ourselves, others and the world being a safe, predictable place, explains Dr Rachel Brindley, clinical psychologist at Maggie’s Cancer Caring Centre, London.
And for those given a false-positive screening result or misdiagnosis, these beliefs have still fundamentally been challenged, which can leave a person at risk of experiencing similar psychological reactions — such as numbed shock, disbelief, anxiety, anger and depression — to those with cancer.
People given a terminal prognosis often work through the stages of grieving — denial, anger, resentment, depression and acceptance, says Craig Jackson, professor of psychology at Birmingham City University.
‘That can be very painful and emotional, and if one is then told it was for nothing, it can still be harrowing to have lived through such despair.
‘Despite the “positive news”, it’s normal to feel angry and bitter — at the medical professional, life and “God”. They may even feel an element of embarrassment or guilt for putting loved ones through such emotionally hard times.’
Some terminal patients develop a defence mechanism to protect themselves and their loved ones, by being distant with relatives to reduce the impact of their impending death, he explains. Patients with a false-positive diagnosis may need to reverse this and work through their guilt for treating their relatives this way.
‘All in all, a reprieve from a death sentence can cause severe emotional and relationship problems.’
In Angela’s case, after her misdiagnosis she was referred to a liver specialist, who found that she had sarcoidosis — a rare immune disease, and she was prescribed immuno-suppressants.
While her loved ones rejoiced at her relatively harmless diagnosis, Angela sank into a depression.
‘I had a breakdown,’ she says. ‘I tried carrying on as normal but I’d really thought my life was over. For the next three years, I thought about dying day and night. I’d get flashbacks, think about what I’d be missing out on if I’d died, and also convince myself that they’d got it wrong and I was dying.
‘I felt guilty because everyone was happy I wasn’t ill, but the experience had scarred me.
‘I slept all the time and needed three months off work. I had no enthusiasm for life.’
Angela, who complained to the hospital that her surgeon had diagnosed her before seeing her biopsy results, found bereavement counselling helpful. It taught her to examine her feelings about death.
‘I realised I had to get on with my life, and things became easier. I’m now a volunteer, supporting new parents, because I have so much empathy for others. In the end, thinking I was dying changed my family for ever because we want to make the most of our lives.’