When Natasha Shannahan was diagnosed with a brain tumour at 33 she dreamt of getting better and learning to salsa dance. She had surgery to remove a tomato-sized mass earlier this year – and had hoped her cancer battle was over. But then she was told that not only has the disease returned, the lump has regrown beyond its original size in just three months. The former teaching assistant at a special needs school was then given the devastating news she would be lucky to make it to her 42nd birthday. Gruelling chemotherapy and radiotherapy were her ‘only hope’ of prolonging her life, according to her NHS specialists.
But Natasha, now 35, from Penge, South East London, feels she’d have a better chance by having pioneering proton beam therapy – a less invasive form of radiotherapy which targets tumours more precisely than current treatments, increasing success rates and reducing side-effects. She says the NHS has denied the wish, and she must find £60,000 to pay for it privately. Doctors at The Royal Marsden, a specialist cancer treatment hospital in London, say the type of cancer she has is not suitable to be treated with the therapy. However, Natasha has been accepted for the treatment by a clinic in the Czech Republic.
“The NHS has told me that my cancer is incurable,” said Natasha, who is currently seeking a second opinion. “According to them, I’ve got seven years to live, and that’s only if I begin chemotherapy and radiotherapy treatment by March next year. But I simply don’t believe this is the best option for me – and I want to find a cure for this myself. “If I die from this, I want the tumour to kill me, not the chemo or radiotherapy.
I haven’t got time to waste, I will fight this to the end.” Shock news Natasha’s ordeal began in April 2016 when she had a sudden minute-long seizure while getting ready for work. Her GP wasn’t too concerned, so neither was she – a bad migraine was initially suspected. After she had more fits, a month later she had an MRI scan as a precaution.
“I wasn’t overly worried. When I went for the MRI scan, I’d asked them, “Is it really necessary? I feel like I’m wasting your time.”” But when Natasha received an urgent phone call at work a day later, she expected the worst. “I was just in complete shock. I looked at my scan and there was a large shadow in my brain.” She was told she needed surgery as soon as possible, but first had to get her ongoing seizures under control or an operation could kill her. “It took me a long time to come to terms with what was happening to me,” she said.
Scared of conventional therapy’s potential side-effects Natasha spent the next 17 months unable to have surgery because she was still having fits – yet she continued to work. But by the end of 2017 she learned her tumour had grown in size. In March this year, Natasha finally had surgery to try to remove the tumour. Yet doctors managed to remove only 80 per cent of the tumour and Natasha was also left with a paralysed left foot. And then, three months later, Natasha learned the tumour is as big as it ever was.
Natasha, who’s now been forced to quit her beloved job, is adamant she does not want chemotherapy and radiotherapy because she is afraid of the associated risks. Side effects vary depending on the chemotherapy drug but can include damage to lung tissue, heart problems, nerve damage and risk of a second cancer, according to The Mayo Clinic. Radiotherapy side effects occur because as well as cancer cells, the treatment can also damage healthy cells and tissues near the treatment area. It can also slightly increase your risk of developing another type of cancer in the years after treatment, according to the NHS.
What is proton beam therapy?
Proton therapy uses charged particles instead of X-rays to deliver radiotherapy for cancer patients. It allows high-energy protons to be targeted directly at a tumour, reducing the dose to surrounding tissues and organs and hence damage to healthy cells. It therefore makes it useful for treating types of cancer in critical areas – when it is important to reduce damage to surrounding tissue as much as possible. Patients generally suffer fewer side-effects compared to high-energy X-ray treatments. From this month, The Christie in Manchester will provide the first UK based NHS high-energy proton therapy service, followed by University College London Hospital in London in 2020. When complete they will each treat up to 750 patients every year.
The therapy can be used to treat spinal cord tumours; sarcomas near the spine or brain; prostate, lung and liver cancer; and some children’s cancers. Cancer Research UK estimates that only one in 100 people with cancer would be suitable for the treatment. The therapy came to public attention in 2014 when the parents of a five-year-old cancer sufferer, Ashya King, were briefly jailed after removing him from an NHS hospital where he was due to receive chemotherapy and taking him abroad for proton beam treatment. It has been available on the NHS for eligible patients since 2008, but involves travel abroad.
According to NHS England, to date it has supported approximately 1,000 patients. “I’ve tried it the NHS’ way, and it simply hasn’t worked,” said Natasha. “The tumour was largely removed and now it’s 100 per cent back. “People my age are settling down and having kids. Instead I’m dealing with this. “I’ve been told that if I don’t have conventional treatment by March I’ll end up disabled, or worse.
“But why are they not talking about proton therapy with me? Why am I being denied it as an option? And let’s face it, chemo won’t get rid of the tumour, it might shrink it but what the hell else is it doing to my body? “Instead I was told, “We don’t have the resources to keep scanning you. If you won’t accept conventional treatment there’s nothing more we can do for you.” It was absolutely devastating to hear.” NHS’ response Natasha’s doctors insist that her type of cancer – a high grade astrocytoma – will not be helped by proton beam therapy.
A spokesperson from The Royal Marsden NHS Foundation Trust said: “Following a detailed assessment of Ms Shannahan’s case, The Royal Marsden devised a treatment plan that Ms Shannahan has chosen not to follow. Read more: Inside Prague’s proton therapy unit where a growing number of British men with prostate cancer are turning to for help “Proton Beam Therapy is not the recommended treatment for patients in Ms Shannahan’s condition. In the meantime we are helping Ms Shannahan to find a second opinion to bolster her trust in our recommendations.” Experts at the private Proton Therapy Center in Prague said they have never treated anyone with Natasha’s type of tumour before but believe there is a chance the therapy could work. A spokesperson said: “Patients with Natasha’s tumour are considered very high risk, with a poor prognosis.
A complete cure is not guaranteed. “And it’s for this reason that many health providers, including the NHS, do not offer proton beam therapy as a potential treatment. “Medical facilities and health organisations have their own regulations and standards when it comes to prioritising patients for the therapy. “However, after reviewing Natasha’s case, we’ve taken the decision to invite her to Prague for treatment. Our oncologists will aim to shrink the tumour and halt its spread while also limiting damage to nearby tissue.”