An international hairdresser with a one in a million cancer has started life-saving treatment at the UK’s first NHS high energy proton beam therapy (PBT) centre at The Christie in Manchester.
Gail Nicholls, aged 47, from Exeter in Devon, was admitted to hospital late last year with suspected appendicitis. Unfortunately following extensive tests, scans and investigations, the mum of four was diagnosed with a sacral chordoma – an incredibly rare tumour which grows in the spine.
Gail, who is married to Alan, said: “It sounds such a cliché, but nothing can prepare you for that news. It was just so unexpected, to say it was a shock is such an understatement.”
The tumour is so rare, doctors locally referred Gail to specialists at the Royal Orthopaedic Hospital in Birmingham, who were able to further assess Gail’s condition and explain her treatment options.
Chordoma is a rare type of slow growing cancer that occurs in the bones of the skull base and spine. It is part of a group of malignant bone and soft tissue tumors called sarcomas. Chordomas account for about 3 percent of all bone tumors and about 20 percent of primary spinal tumors.
She said: “I was told immediately that because of its location in the vertebrae of my lower spine, it would be very hard to treat, and without treatment the prognosis would not be good. The specialist staff however reassured me that there were options available to me. They were informative and compassionate as they explained those options, which were risky surgery or proton beam therapy.”
Chordomas are complicated tumors to treat due to the involvement of critical structures such as the brainstem, spinal cord, and important nerves and arteries. Surgery would have almost certainly caused life-changing complications for Gail because of the risk of damage to nerves in her spine causing loss of sexual, bladder and bowel function. Proton beam therapy however is a specialist form of radiotherapy that targets certain cancers very precisely, reducing side-effects and causing less damage to surrounding healthy tissue and vital structures in the body.
Gail’s case was put before a national panel of experts who decide if PBT is appropriate and within a few days, Gail was delighted to learn she had been accepted for treatment at The Christie. Two days later Gail and her husband Alan were on their way to Manchester for an assessment visit.
PBT has been offered overseas to NHS patients who are eligible for treatment in England since 2008 in a programme that has to date supported over 1,000 patients. However, for many cancer patients, travelling abroad is difficult, particularly if they are less well or require other treatments such as surgery and chemotherapy. The trip abroad can also result in families being separated during a very stressful time.
The Christie is the first NHS high-energy PBT centre in the UK as part of a two centre £250m national PBT service funded by NHS England. A second PBT centre is currently being built at University College London Hospitals NHS Foundation Trust and is due to open in 2020. To ensure consistency of service, once the two UK PBT centres are operational, some patients will continue to be sent abroad for treatment until both centres have fully developed their capacity of up to 750 patients a year.
Gail said: “When I was first accepted for protons, I assumed as The Christie is still so new, that I’d automatically be going to America for treatment, so when I heard that the team at The Christie had accepted my case, I felt a mixture of delight and relief. I had a way forward that would mean that despite being away from home for almost three months, my family will be able to join me when they can, and I will still be able to do what I need to run my business, which was a huge weight off my mind.”
“As soon as I stepped foot in The Christie, I felt immediately reassured. I was told what would happen and when, and I was given a key worker who is available to me at any time to help with any questions or problems I may have. Within a very short space of time I have gone from despair at not knowing my future, to hope that I now have a way forward.
“I’ve also had some wonderful support from the Chordoma Foundation and Chordoma UK and in Facebook groups I was directed to. As my disease is so rare, initially there was very little information I could find at first, and without their support I would have been swimming in a dark sea of despair.”
Consultant clinical oncologist Dr Stephen Kennedy is leading Gail’s care at The Christie. He said: “With PBT, compared to conventional radiotherapy, there is less dose to surrounding normal tissues and less risk of permanent long term effects of treatment. This is particularly important for tumours like Gail’s which are in hard to treat areas such as the spine.”
Gail underwent all the assessments and preparation needed to begin her treatment, including planning scans and having specialist moulds made to aid the accuracy of the treatment and is now midway through her daily course of treatment which is being given over 44 days in total. During that time, she is staying in NHS-funded accommodation in a serviced apartment in Manchester city centre.
She said: “I am naturally a very optimistic and bubbly person, so I am doing my best to take everything in my stride and find humour where possible. At 47 years old, who would have thought I’d be getting my first tattoo on my bum as part of my treatment and that I’d be showing it off to anyone who wants a look!”
Gail is a salon owner and an international hairdressing educator, who trains professionals in how to fit hair extensions and hopes to use her time in Manchester constructively to help her business. She added: “My treatment is at the same time every day and doesn’t take more than an hour, so especially during the week when my family isn’t here I sometimes have a lot of time on my hands. I’m getting to know Manchester better as I’m an architecture nerd, but I’m catching up on admin, writing courses, and I’m even planning to get a specialist hair dummy so I can learn some new techniques I’ve always wanted to learn, but just not had the time.”
A PBT patient’s treatment course is typically six weeks long with individual treatment sessions around 30 minutes for five days a week. Much of the 30 minute treatment session is spent positioning the patient properly and checking the position with imaging in the treatment room, with just two to three minutes of that being when the beam targets the tumour.
The Christie PBT centre includes a dedicated research room (funded by The Christie charity) to investigate how PBT can be delivered more precisely and effectively, meaning better treatments for patients and fewer side effects. A team of world leading research scientists, engineers and clinicians are working together to look at how protons interact with different tissues, where exactly they deposit their dose and how precisely they cause biological damage to the tumours.
The Christie NHS Foundation Trust has been ranked ‘Outstanding’ twice by the health regulator the Care Quality Commission (CQC) which referred to it as ‘exceptional’ and ‘a leader in its field’. It not only commended the Trust for its effectiveness and care, but highlighted its work in shaping the future of cancer care and noted the reach and influence of its clinical research projects. The CQC also rated The Christie the best specialist trust in the country, and one of the top three trusts overall in England.