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Patricia Swannell (pictured) was many things during her lifetime — an economist, investment banker, devoted mother to her children Will, now 39, and Alicia, 37, and an accomplished artist whose intricate prints and abstract water-colours sold across the globe. But in her last two years, she devoted much of her time to one burning issue. Diagnosed with breast cancer in 2007, at the age of 55, and given the all-clear five years later, she learned in September 2021 that the disease had returned — to her bones, liver and abdominal lining. But this only came after four years of repeated trips to doctors, who at one point put her symptoms down to an autoimmune condition and prescribed anti-rheumatic medication.

Highly articulate, Patricia was determined to use her own experience to expose deep flaws in the way secondary breast cancer is diagnosed and treated, somehow managing to bring grace to her own situation while also advocating for other women. With the help of her husband of 42 years, Robert Swannell (pictured together), an investment banker and former Marks & Spencer chairman, she raised more than £1 million in less than a year and led a campaign with the charity Breast Cancer Now to make sure women and clinicians understand the risks of secondary (also known as metastatic) breast cancer. This is not the same as cancer recurring where it first started, but when it recurs elsewhere in the body.

Patricia had assumed that when she saw a doctor at any point after her original diagnosis, they would automatically see her medical history and be alert to any sign, however apparently trivial, that the breast cancer might have returned, either in the breast or elsewhere. She found, to her great cost, this isn’t always the case. By the time the true cause of her tiredness and searing hip pain was identified, she had large secondary tumours in her abdomen and bones. It is a shockingly common experience, according to research commissioned by Breast Cancer Now in 2019. Its survey of more than 2,000 patients with secondary breast cancer found that one in four visited their GP three or more times before being diagnosed. 

‘Twenty per cent told us they were initially treated for a different condition before being diagnosed with secondary breast cancer,’ says Baroness Delyth Morgan, chief executive of the charity. ‘There is a desperate need to raise awareness of the signs and symptoms of secondary breast cancer among GPs. While secondary cancer isn’t curable, it is treatable, and early diagnoses can mean many more years of life.’ Patricia died on September 8, less than two years after her secondary cancer was identified. But rather than harbouring anger towards her doctors, Robert says he just feels ‘immeasurably sad — life without her is unimaginable. She was my partner and guide in every tiny step.’ Despite losing his wife just over three weeks ago, Robert, 72, is continuing with her work. ‘The issue that fired Patricia is that most women are simply not told enough about secondary breast cancer risk,’ he says.

‘It’s clear from Patricia’s personal experience and highlighted in Breast Cancer Now’s research, that women are not routinely screened for secondary cancers and clinicians are not well trained in spotting the symptoms which should raise red flags. It is that simple.’ One in seven women in the UK is diagnosed with breast cancer in their lifetime; about 55,000 a year. Although the five-year survival rate for primary breast cancer is 85 to 90 per cent, there’s another figure you’re less likely to hear. Secondary breast cancer affects 20 to 30 per cent of women diagnosed with primary tumours and 31 die of it every day in the UK — that’s almost 12,000 every year. These figures are not trumpeted quite so loudly, nor is the fact that stray cells missed by the initial treatment (so-called micro-metastases) can lie dormant, sometimes for decades — in Patricia’s case for 14 years — before reappearing in other parts of the body, causing seemingly unrelated symptoms. 

Patricia’s primary cancer was a lobular tumour, one that starts in the breast’s milk-producing glands. While this is slow-growing, it is likely to spread aggressively, typically to the liver, bones and gastrointestinal tract — something her doctors did not make clear or mention at her annual checks. Patricia had a mastectomy in 2007 to remove a 4cm tumour from her right breast, chemotherapy and radiotherapy. After five years, she was delighted to be told she was cancer-free, though she stayed on tamoxifen, a hormone treatment, to reduce the risk of recurrence. She had yearly mammograms, which were clear. She kept her weight low, exercised and didn’t drink alcohol. When, four years ago, she had a series of health niggles, it didn’t occur to her that these might be signs of secondary disease. As long ago as 2017, she felt tired and had pain under her ribs. By 2019 she had recurrent pain in her right hip which got progressively worse. By the time of her secondary cancer diagnosis she was on crutches. She visited her NHS GP on numerous occasions and was referred privately to various specialists — including, in 2018, to a consultant rheumatologist who diagnosed lupus, an autoimmune disorder that causes fatigue and joint pain (for which she was prescribed the anti-rheumatic drug hydroxychloroquine).

And a cardiologist diagnosed pericardial effusion, a build-up of fluid between the lungs and chest wall sometimes found with lupus. Patricia assumed these experts would have access to her medical notes, but found out later that the NHS uses multiple data systems, and the private healthcare system (where she received some care) yet more. None of these experts knew her cancer history and Patricia, believing she was cancer-free, didn’t think to mention it. Finally, trying to find relief from the ache and discomfort in her hip, in September 2021 Patricia saw a physiotherapist, a family friend who, knowing her history of cancer, urged her to have an MRI scan, which she arranged privately. This showed cancer had spread to her bones, liver and peritoneum which lines the abdominal cavity — hence the pain and fatigue. Robert gave up work on the spot. ‘I knew supporting her would be the most important thing I’d ever done in my life,’ he says. ‘And it was.’ 

Patricia began treatment with fulvestrant and palbociclib — drugs used to treat breast cancer that has spread — which were not effective, and denosumab to treat the bone metastases. She also had chemotherapy, capecitabine — which worked briefly, shrinking her bone tumours — and eribulin. ‘While secondary breast cancer is currently incurable, more people are living longer following a diagnosis,’ says Baroness Morgan, pointing to a new generation of targeted drugs, including pertuzumab, that help slow down disease progression, offering more time. Timely access to treatment can relieve symptoms and have a dramatic impact on quality of life,’ she adds. Patricia felt wildly frustrated on speaking to younger women with small children on Breast Cancer Now forums whose lives had been shortened unnecessarily by a late secondary diagnosis. ‘Patricia never forgot being told by an eminent oncologist [now retired] during her treatment: “Our women [patients] don’t want to know the risk of their cancer returning. It would worry them,”‘ says Robert. ‘Patricia fumed: “That attitude is patriarchal and out of date — women have a right to know.”‘

‘Feisty and stroppy’ by nature (her words), Patricia devoted the rest of her life to making sure that every woman at every stage of cancer has information — if she wants it — on the risks of secondary cancer, and every clinician has access to full patient history. As well as fundraising, the couple used Robert’s business connections to land meetings with senior people in the NHS and BUPA, but it was Patricia’s focus that pushed the proposals through. In a searing interview with the charity two weeks before her death, Patricia said: ‘I kept on thinking: if only the experts had been more forthcoming about the incidence and symptoms of secondary breast cancer, and I’d been aware of them, I could have made sure every doctor I saw knew my cancer history. There would have been more treatment options and I could have had them earlier, giving me years longer with my family — but that was not to be for me.’

Without a trace of self-pity, she continued: ‘I’m so pleased we have been able to turn this into something positive and that feels good. It is in my nature to shout, and we’ve been able to shout loud. Perhaps it sounds mad, but it makes me feel lucky that I was in the 20 to 30 per cent group whose cancer came back. I’m so glad we’ve been able to speak to the right people and start new conversations that have already brought change. Those changes won’t help me, but they’ll help thousands of women in future. Having a daughter and a sister, that does seem to me really worthwhile.’ Due to Patricia’s campaigning, NHS web pages were updated this year with new information on the symptoms of secondary breast cancer recurrence. Peter Johnson, a professor of medical oncology at the University of Southampton and National Clinical Director for Cancer at NHS England, says the NHS has now promised funding for an audit of secondary breast cancer services to improve access to, and outcomes of, treatment. Currently, there isn’t even data on the number of patients whose secondary cancer is diagnosed late.

‘It is really important that anyone who has had breast cancer before is aware of the signs and symptoms of secondary breast cancer, which can include frequent headaches, bone pain, breathlessness, swelling or lumps elsewhere in the body, bloating and weight loss,’ says Professor Johnson. ‘If anyone is worried, please do get it checked — it might not be cancer, but it’s better to get it ruled out quickly.’ Breast surgeon Liz O’Riordan (pictured), author of Under The Knife and The Complete Guide To Breast Cancer, was diagnosed with lobular cancer in her left breast eight years ago, aged 40. She was treated for a local recurrence in her chest wall in 2018 and another near her mastectomy scar in July this year. ‘It’s really hard to know when women want to hear the news that their cancer could come back, both as a surgeon and a patient,’ she says. ‘But they need to know, whether they want to hear it or not. It is vitally important they know what the symptoms are, and what to do if they’re worried.’

‘They also need to know it’s important to keep checking their breasts and mastectomy scars for signs of a local recurrence. I’ve had two. I don’t think I ever told my patients to do this and don’t think I ever saw a guide on how to do it — which is why I did my own. Surgeons and oncologists need to have that awkward conversation. We need to make sure junior doctors know the signs — particularly of lobular cancer, as a small number of women, including a friend of mine, have been wrongly reassured before ending up in hospital due to metastatic disease.’ Dr O’Riordan admits she was terrified the first time she had a headache after treatment. ‘I thought: could it be brain mets [metastases]? Do I need a scan? Then I got hip pain, and a cough that wouldn’t shift after a bad cold. Again, I was convinced it was metastatic disease. I contacted my GP and thankfully my scan was normal. But the fear is real — not just of a recurrence, but of not being taken seriously.’

Consultant psychologist Frances Goodhart, co-author of The Cancer Survivor’s Companion, says it’s normal to fly to the worst-case scenario. ‘You can’t stop your mind from doing this — you live with the threat, and, in many ways, your mind is trying to keep you safe,’ she says. ‘The trouble is that it can become overwhelming and disruptive to your life. So how do you manage the fear? Firstly, speak kindly and reassuringly to yourself. Use your senses to damp down the threat in whatever way soothes you — music, perfume, going for a walk, meditation, seeing friends. Secondly, give yourself time. Make a note of what you are experiencing physically, so you have a record of it and you can then see if your thoughts settle. But if you continue to have the physical issue or feel concerned, seek advice from your oncology team or GP. Don’t assume others will think you are making a fuss — but equally, don’t assume that they know about you: they’re working in a stretched service and may need your guidance with a concise summary of your medical history — having it written down can help. Let go of that British stiff upper lip and ask for help if you need it.’ 

A fifth of the £1 million raised by the Swannell family will be spent on educating women and clinicians on secondary breast cancer symptoms. Another £100,000 will be spent on a programme at the Institute of Cancer Research developing more sensitive blood tests to detect the presence of tiny amounts of cancer cells left after treatment (molecular residual disease), which could mean treatment for secondary breast cancer begins earlier. The remaining £700,000 will go to research into why breast cancer can lie inactive for years before reawakening and leading to secondary breast cancer. It’s particularly relevant to oestrogen receptor positive (ER+) disease, the most common type of breast cancer (accounting for 80 per cent of all diagnoses, and the type that Patricia had). Patricia was fed via a gastric tube for the final year of her life, as the tumours in her stomach meant she was no longer able to eat — something she felt could have been avoided if her cancer had been detected earlier. 

In May, her oncologist told her there was little benefit in carrying on treatment. She died at home on September 8, surrounded by the family she loved so fiercely. ‘She was so completely at peace,’ Robert says. ‘Nothing was left unsaid, she was surrounded by love and holding hands with me and our two children. If there is a perfect way to die then she achieved it, as she did with so much in life.’ Despite being in a ‘tumble dryer of emotion’, Robert is determined to carry on her legacy. ‘I am relentless and I won’t rest until this is done,’ he says. ‘Patricia was a remarkable, talented woman — alongside all her loving qualities and kindness she had a steely resolve. The mission to make things better for other women was so important in her last year. I can’t imagine life without her but ensuring its success will be a great solace. It’s an amazing reminder of what made her special.’ For information on the signs of secondary breast cancer, go to breastcancernow.org. Read the full story: https://www.dailymail.co.uk/health/article-12585493/If-doctors-told-danger-secondary-breast-cancer-years-longer-family-heartbreaking-words-Patricia-died-month-grieving-husband-reveals-life-changing-legacy-women.html?ito=msngallery

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Content source – www.soundhealthandlastingwealth.com

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