Mum-of-three Emma Ellis spent more than six months in agony before she was told the devastating news that she had incurable cancer.
The 45-year-old, from Morecambe, Lancashire, says she was seen by 13 different NHS doctors before her pancreatic cancer was finally spotted and diagnosed.
When medics made the devastating discovery Emma was told she had just six months left to live.
She said: "I know it’s hard for the NHS, but my situation is a difficult pill to swallow.
“At the time of my diagnosis, I felt total anger. I don’t want to be bitter because it won’t get me anywhere but I know that if I’d had a CT scan sooner, the tumour could have been dealt with more effectively.
“By the time doctors found it, it was 5cm large."
Emma, who has a four-year-old daughter, Harri, first went to her GP with stomach pain in April last year.
Up until then she had always been fit and healthy but when she started suffering from sharp upper abdominal pain, she knew something was seriously wrong.
Emma, who is also mum to Elle, 24, and Drew, 20, says this was the start of her six month fight to get the right – and tragic – diagnosis.
She says she pleaded for scans and tests but claims she was told there was no risk of her having cancer, only to be told in September, 2018, there was a tumour on her pancreas.
Both Emma and her 37-year-old husband, Andrew are "angry" it wasn't diagnosed earlier.
Emma says that both she and her husband Andrew, 37, were ‘angry’ her tumour wasn’t picked up earlier.
The former catering worker said: "When I speak with other pancreatic cancer patients, many of them have had a similar journey – they’ve had the same fight to get scans and to get an ultimate diagnosis.
"Doctors looked at me, saw that I was 45 and thought, ‘There’s no chance she’s got pancreatic cancer’, a disease that usually affects people in their 70s. But I knew something was wrong.
"A big part of the problem is that the symptoms of pancreatic cancer are confusing and difficult to spot. I was going to my GP with random abdominal pain.
"I want to share my story in a bid to make people aware of the symptoms – and that you can be diagnosed with this terrible illness in your forties."
Emma was initially given just six months to live with her stage 4 tumour said to be ‘inoperable’ due to the fact it’s wrapped around a major artery.
Her tragic story has emerged in the same week a new study published in the Lancet Oncology found cancer survival rates in the UK were worse than Australia, Canada, Denmark, Ireland, New Zealand and Norway – with pancreatic cancer one of the worst performing areas.
Cancer Research UK said the UK could do better and called for more "investment in the NHS and the systems and innovations that support it”.
During her initial visit to the GP, Emma says she was told it was likely she had gallstones and she was referred for an ultrasound.
This came back clear six weeks later and Emma says doctors then suspected she had an ulcer.
She was still in pain, with her health deteriorating, and also losing weight.
Emma, who still keeps herself active be going for walks with friends, said: "I said to my GP, ‘I think I’ve got stomach cancer’ but I was told, ‘there’s no way you’ve got cancer, you’re bloods aren’t showing any markers and you’re too young’."
After being prescribed medication for her suspected ulcer, Emma was told to monitor her symptoms for the next three months.
In addition to her agonising stomach pain, Emma started experiencing agonising back issues and couldn't stop vomiting.
She said: "I went back to my GP again – and I ended up seeing 13 doctors, and went to A&E twice before I eventually got into the Ambulatory Care Unit at the Royal Lancaster Infirmary.
"By mid-September I was begging them, I just knew there was something seriously wrong."
The on September 26 last year, on another visit to A&E, Emma refused to go home and begged doctors for a CT scan.
An hour after the scan specialists surrounded her bed and told her the worst – she had pancreatic cancer.
Emma, who hasn't officially complained about her hospital treatment, said: "It was horrific. I had a panic attack and it was all very surreal. My daughters came up to the hospital and I had to tell them.
"I was told I had six months to live, and I had to come to terms with the fact that I might not see my little girl grow up. It was awful.
"But I knew then I would fight it. I don’t know what I’m going to do, but I don’t want to die."
Emma underwent six sessions of chemotherapy, which halved the size of the tumour to 2.5cm.
But she was then given the horrifying news that because the tumour is located near major organs, standard radiotherapy was not an option.
Emma has defied doctors original prognosis and is now desperately fundraising for treatment abroad that he believes could save her life.
The specialist care she is crowdfunding for is proton beam therapy, which she says she hasn't been offered on the NHS.
Unlike traditional X-ray radiotherapy, proton therapy uses an accelerated ‘pencil beam’ of positively-charged particles, travelling at 100,000 miles per hour, which is said to target the area with pin-point accuracy and has a better chance of shrinking the tumour.
While X-rays pass all the way through the body, damaging sensitive tissues around and behind the tumour site, proton beam therapy particles stop at the tumour, reducing collateral damage.
The first ever NHS proton therapy centre opened at the Christie Hospital in Manchester last year while a second NHS facility is due to launch at the University College Hospital, London, next year – at a combined cost of £250million.
But they will only be able to treat around 750 patients each year.
Emma, who is undergoing another six sessions of chemotherapy after her tumour began to grow again in June, says: "The NHS has got limited resources and I know they’ll focus on the kids.
"But if I can’t have proton therapy on the NHS, I’m hoping I can go to a foreign clinic, like the one in Prague, Czech Republic, and pay for it privately.
"I’ve already defied a lot of expectations, having fought this thing for more than a year.
"And meanwhile my little one lets me know, in her own way, that she understands what’s going on.
"She says things like, ‘Are you going to get better, mummy?’ And I have to tell her, ‘I’m going to try my best, but I don’t know if I can, sweetheart.’"
Dr Jiri Kubes, medical director of the Proton Therapy Center in Prague, said Emma’s case was typical of the pancreatic cancer patients they treated.
He explained: "In the past there was virtually no effective option for cancer of the pancreas and liver.
"And while, even today, cure rates are very low, proton therapy can slow the progression of the disease, giving patients who are suitable for the treatment more time to live.
"It will also be the case that many UK patients who want proton therapy are not given access to it through the NHS.
"While the NHS acknowledges the benefits of Proton Beam Therapy, and is building its own centres, they will still only be able to treat a fraction of those who might benefit from it, while many people will be turned down for the treatment because of the very limited indication criteria.
"There’s still a long way to go before patients in the UK have widespread access to it."
The Proton Therapy Center has treated more British patients than any other facility in Europe – including the famous UK toddler Ashya King in 2014 – and often sees patients referred there by private medical insurers, such as BUPA.
Treatment at the Proton Therapy Center in Prague typically costs between £20,000 and £65,000 for adult patients.
Proton therapy is used to treat a range of cancers, including cancers of the brain, central nervous system, head and neck, prostate, breast and lymphomas.
There are also only a handful of facilities in the world able to treat breast cancer – including the Proton Therapy Center in Prague – however none will be able to do so in the UK.
Mr Shahedal Bari, Medical Director of University Hospitals of Morecambe Bay NHS Foundation Trust (UHMBT), said: “We are deeply concerned to hear about the experiences of this patient and wish to help in any way we can.
“Our Patient Advice and Liaison Service (PALS) would be happy to hear from her and can look into this further.
“The phone number for our PALS team is: 01539 716621.”
- For more information about how you can donate to Emma's appeal, click here .
- For more information about proton beam therapy, click here .
Symptoms of pancreatic cancer
- Pain in the back or stomach that can come and go initially and is often worst after eating.
- Unexpected weight loss
- Yellowing of the skin or the whites of the eyes.
- Dark yellow or organe urine.
- Pale coloured poo.
- Itchy skin.
- Feeling sick or being sick.
- Changes in bowel movements.
- Fever or shivering.
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