A 'brave' mother who has endured seven operations, including a leg amputation, in a 'gruelling' battle with a rare cancer has been told her tumours are 'incurable'. Investment banker Sam Butler, 41, was diagnosed with giant cell tumours (GCTs) in 2020 after a fall caused pain in her leg.
Medics initially believed the cancer, which affects nearly two in a million people, was benign, and she 'thought the battle was over' after having it removed. However, malignant tumours were discovered in her spine 'by accident' two years later when an X-ray for a chest infection devastatingly revealed her cancer had returned. Since then, she has been in and out of different hospitals.
Ms Butler, from Bexleyheath, southeast London, has had five operations on her legs, including an amputation above her right knee, as well as two extensive spinal surgeries during which her vertebrae were removed and replaced with metal rods. The most recent of these lasted a 'brutal' 19 hours.
She was initially told 'not to worry' about her diagnosis due to her age. According to Sarcoma UK, GCTs are more likely to affect people between 20 and 40 years old. However, she was later told the tumours on her spine would have been 'inoperable' if she had waited any longer for surgery.
Between operations, Ms Butler has undergone several rounds of 'aggressive' chemotherapy, one of which lasted 72 hours, as well as radiotherapy treatments. She has spent the past eight weeks in hospital and is this week undergoing a third 'high risk', three-part operation on her spine. However, she has been told her tumours are likely to grow back even if the surgery is a success.
She will remain in intensive care until Friday before undergoing an operation to place a stent in her aorta, as there is a tumour 'fused to the wall that lines it'. On April 28, she will have an 'extremely high risk procedure' to remove part of her spine and replace it with donor bone and metalwork.
Her family have launched a fundraiser to help make her home, where she lives with her seven-year-old daughter Florence, more accessible. Ms Butler's sister, Jodie King, 45, told the Daily Mail: 'She's such a young, beautiful, outgoing girl. I can't imagine losing a limb to cancer, it's such a major life adjustment.'
'As my sister we have a really close bond and it's absolutely harrowing. Sam is very depressed and feels lonely and isolated. We feel utterly helpless because there is only so much you can do.'
'We've been told it's incurable and we've had conversations you'd never want to have [about the future]. She's on the most amount of pain relief, it's agonising for her to move and she hasn't got out of bed in eight weeks.'
'She's the strongest person I've ever met with the level of physical pain she's had to endure, but the mental pain is even worse. Trying to keep yourself up physically and mentally, it's on another level. But she's always been stubborn and we've kept her going.'
'She has a little girl and if it wasn't for her I think she would have given up a long time ago. This latest operation is a choice even though it's likely the cancer will come back within a year - but the level of bravery is so unwavering, she's so determined and will keep going until there are no options left.'
Ms Butler's family have already raised more than £20,000 towards fitting a stairlift and wet room in her home, as well as exploring other treatments. Speaking about her sister, Ms King said: 'She's really funny, and has such a strong mind. She's such an independent woman and she works so hard. She's intelligent, witty, the life and soul of any room. But that's been ripped away from her and to see that fade, we are grieving because we've lost who she is.'
'Florence is aware of what's going on she's very used to it because her mum has been ill as long as she can remember. Sam was born to be a mum, she's very maternal and loves being a mum. She has four nieces who were born before Flo and she's like a second mum to them. She's the fun mum, the fun aunt. But she's been robbed of so much, of being the parent she wants to be.'
In the fundraiser set up by Ms King, she wrote: 'For the past five years, Sam has been fighting a relentless and extremely rare cancer: malignant giant cell tumours. It is a battle that keeps returning, each time demanding more from her body, her spirit, and our family... Despite everything she has already endured, Sam is now facing another recurrence in her spine and an upcoming third, extremely high risk spinal surgery.'
'Her last spinal operation lasted a whopping 19 hours! Each surgery has been brutal – and at the same time, nothing short of miraculous. Nothing can prepare you for watching someone you love in intensive care on a ventilator, learning how to breathe again after their lungs were punctured and their aorta was nicked during surgery. Or for seeing them fight through months of recovery, relearning how to walk, only to later face losing a limb.'
'On top of the surgeries, Sam has endured months of aggressive chemotherapy and radiotherapy – treatment so intense it left her hospitalised for long periods. She travelled into London daily for treatment while incredibly weak, all while losing her waist length hair. This was one of the toughest pills to swallow and not for vanity reasons but because she now looked sick and it became impossible to hide this from her daughter.'
'Sam's done her best throughout to protect Florence from the reality of how unwell she has been and the pain and upset. The physical and emotional toll has been immense.'
She added: 'Through every single moment, Sam's reason for fighting has always been her daughter, Florence, who is now seven years old. Every ounce of strength she has left, every painful step forward, has been for more time with her little girl. Sam was born to be a mum. Anyone who has met her knows her nurturing, maternal nature. Yet this illness has robbed her of so much precious time. Sam has spent long periods in hospital, away from home and away from Florence. Florence has had to see her mum in pain and suffering – something no child, and no parent, should ever have to endure.'
Ms King concluded: 'Hope is what has carried us through the darkest moments, and we refuse to lose it.'
