Yesterday marked World Neuroendocrine Cancer Day. One Godalming woman who was diagnosed with the disease last year, at the age of just 30, told Nub News her inspirational story.

Jessica Howell recently did a charity run to raise funds for a cancer charity.

But this wasn't just a run-of-the-mill fundraising effort: Jessica was running for the Neuroendocrine UK charity after being diagnosed with the disease itself, and given the devastating news that it can't be cured.

Faced with a terminal diagnosis, Jessica has set out to make the best of the time she has, and has made it her mission, as she says, to prove that it's possible to live life and enjoy it despite a cancer diagnosis.

That has included a 10-mile charity run, dressed in zebra-patterned clothing, to raise funds for the charity which has helped her immeasurably over the past year.

Jessica, who works as a representative for Swiss tourism company Hotelplan, says she is determined to prove that patients can make the most of life after being given a terminal diagnosis.

"My life's mission is to prove to people that you can live with cancer," she says.

But behind the story of this most inspirational of women is the story of missed signals that could have led to an earlier diagnosis.

Jessica says: "I started going to my doctor in 2017. I didn't feel right: I was going to work, working at 120 miles an hour and then finishing work and going for a run afterwards. I couldn't understand why other people weren't keeping up with me. I had constipation, and the doctor gave me laxatives. He said I had a slow bowel transit, so I changed my diet and exercised more."

"I also lost weight, and then I felt a lump in my stomach."

Her doctor referred her to the Royal Surrey County Hospital for an ultrasound, followed by a CT scan. The following day she was told she had cancer. A large tumour was present in her abdomen and there were also signs the cancer had spread to her lungs, her liver and her bones.

"I was 30 years old at the time," she says.

But the doctors couldn't tell her with any certainty where her cancer had begun.

The uncertainty arose from the fact that with neuroendocrine cancer it is difficult to work out exactly where in the body it has started. Neuroendocrine cancers attach themselves to the outside of the adrenal glands, and originate from many places in the endocrine system.

Jessica's tumour, called a paraganglioma, had broken off and spread to her lungs, liver and bones.

And that, in a roundabout way, is why Jessica and her friends dressed in zebra-patterned clothes for their charity run.

"If you heard the sound of hooves clip-clopping up behind you, you would say it was a horse," she explains. "But it could also be a zebra: it's not necessarily what you would assume it to be. And it's the same with neuroendocrine cancer – there are so many other things it could be, and it's about doctors looking until they find whatever it is."

"Neuroendocrine cancers are often misdiagnosed as something else.

"We need GPs to look for the zebra. It makes the same noise as a horse, but needs to be treated as a zebra.

"If you find it early you can remove it and manage the condition throughout the person's life.

"Because mine had spread, it had reached the stage where it had become incurable."

The tumour was attached to her aorta, and Jessica's doctors at the Royal Surrey told her it was too dangerous to operate in an attempt to remove it.

She embarked on a course of MIBG therapy, which differs from traditional chemotherapy in that it targets the endocrine cancer cells.

"Traditional chemotherapy poisons the body: this treatment is very clever in that the radio-isotope is directed to endocrine cancer cells," she explains.

"I am very lucky in that I still have my hair, and generally I live a very normal day-to-day life."

Jessica has had two rounds of MIBG and another due to take place next week.

"I have to go into an isolation room for a week afterwards because I'm radioactive," she says.

It's an uncertain process too: "They don't know how the tumour is going to react," she says. "It might go to sleep or it might start growing again."

Some people have a genetic disposition to this form of cancer, although that doesn't appear to be the case in her instance. She agreed to allow samples to be sent to an Oxford University professor who is researching the genetic mutation that could give rise to the condition.

In January Jessica headed to King's College London for what she thought was another round of therapy. Instead, she says, she was told the doctors had decided to operate.

"It was very risky, but the surgery was booked for the following Wednesday," she says.

The operation was carried out by a visiting professor from Australia: the theatre was booked for 15 hours, but in the event it took only seven.

"They got the whole tumour out," she says.

"My prognosis changed from one year to hopefully over 10 years."

And she is grateful for that extra time, hopeful for the future – and enthusiastically living the life she has today.

"When you put it in perspective of the life I could have had – I could have spent the last 12 months of my life in lockdown," she reflects.

And it's changed her perspective on life as well.

"Things that used to stress me out, like work, don't stress me at all," she says. "If something happens I don't stress, I'm cool as a cucumber!"

Part of that is down to the support she has had from Neuroendocrine UK.

"They had a Net Natter group for people with the condition, which became a virtual service in lockdown," she says. "I went to the first one in February and was the youngest there. I was totally blown away, and inspired, by the people there."

Wanting to give something back to the charity that helped her through this testing period, Jessica decided to tackle the Great South Run to raise funds for them.

She was diagnosed with cancer last October, two weeks before she was due to take part in the race. She went ahead with the run, not telling friends about her illness.

"I thought I would do it again this year and raise some money," she says. "Once I told my friends what I was doing, they asked to join me."

"I set my initial target of £500 – within three days we had £3,000."

Sadly the pandemic put an end to those plans, but Jessica decided to run anyway.

Splitting into two groups to comply with social distancing rules, she and her friends ran 10 miles from Godalming to Guildford.

"We came back via Loseley, and it was just the best day ever," she says.

An extra donation of £2,000 after the run brought the fundraising total up to £14,521. Jessica has been told the money will cover the cost of the charity's counselling service for over a year.

"I am so proud of what we have achieved," she says. "I am so glad I have been able to do something for them."

Although Covid has meant Jessica has had to shield, "I still exercise, and I went to see friends when it was safe.

"All of us endocrine cancer bods are just living our lives. It doesn't define me, but it's part of me, and I am going to carry on living my life."

Catherine Bouvier, co-founder and CEO of Neuroendocrine Cancer UK, said: "Recent patient data has confirmed facts that advocacy organisations have been highlighting for many years, and that we now have to address. Diagnosis by luck is not good enough.

"Equitable access to innovative diagnostic and treatment tools in neuroendocrine cancers and genetic NETs is a significant global challene, and a focused effort should be directed at advocating to include these cancers and tumours in national cancer plans, but also to significantly increase awareness and provide specialised education amongst all relevant HCPs, to facilitate faster detection, diagnosis and referral to expertise.

"We need to change attitudes towards rarer cancers and ensure all affected have a clear, effective and holistic diagnostic and treatment pathway."

Anybody who would like to support Jessica in raising funds for Neuroendocrine Cancer UK is invited to click on this link.