A RETIRED teacher from Worcester, who was given three months to live eleven years ago after being diagnosed with stage four bowel cancer, has been involved at the heart of a major initiative to help reduce the number of people who die from the disease.

Barbara Moss, a former teacher mainly of English at Blessed Edward Oldcorne RC Secondary and the Royal Grammar School, was told she had the condition (also known as colorectal cancer or CRC) which has spread to her liver in 2006.

After reeling from this devastating news, she started looking on the internet and researching available treatments, only to find the one she thought gave her the best chance – a drug called Avastin - was not available on the NHS.

The mother of two from Aconbury Close, Worcester, decided to pay for her own treatment out of her pension. It cost tens of thousands of pounds and included paying for nurses’ and consultants’ time – otherwise free to NHS patients.

She is convinced the drug saved her life. Her cancer shrank so rapidly that it became operable and the tumour was removed at the Queen Elizabeth Hospital in Birmingham a year after being diagnosed.

She still has check-ups and has suffered side effects, such as osteoporosis and chronic pins and needles or paraesthesia, from some of her treatment but she leads a full and rewarding life.

This inspirational woman has, for a number of years, used her own experiences to campaign for other people to have better access to live-saving treatments and a better experience of the health service.

She travels all over Europe speaking at various medical forums and representing patients on committees with the aim of improving medications and the way patients are treated by the medical profession.

In the past couple of years she has been involved in a collaborative ground-breaking project initiated by the charity Bowel Cancer UK called the Critical Gaps Research Initiative.

Medical experts are predicting nearly 332,000 people in the UK will needlessly die from bowel cancer in the next few decades unless critical research is undertaken to identify the causes and cures for the disease.

CRC is the second biggest cancer killer in the UK, claiming 16,000 lives annually and it is the fourth most common cancer with more than 41,200 people diagnosed each year.

Bowel Cancer UK says early diagnosis is critical to changing this, but the disease can be difficult to detect in the early stages as symptoms are often attributed to more common, but less serious, conditions.

Nearly 98 per cent of people will survive bowel cancer for five years or more if detected at stage one compared with less than one in 10 people who are diagnosed at stage four.

In a bid to improve the diagnosis at the early stages, find causes and effective treatments, Bowel Cancer UK brought together 100 leading scientists, healthcare professionals and people affected by the disease to identify the key research gaps and priorities in bowel cancer research.

Barbara Moss was one of those people and played a key part in the initiative.

If the key research gaps are addressed, they could transform survival rates and ultimately benefit thousands of people in the future.

The report, published this month, resulting from this collaboration reveals 15 key research questions together with vital recommendations to address these gaps, which include:

1. How do our genes, lifestyles and the environment we live in affect risk of bowel cancer?

2. How can we improve the bowel cancer screening programme?

3. Can we develop new treatment options with the potential to cure people of bowel cancer?

4. How can we improve quality of life for people living with and beyond bowel cancer?

5. What’s the best way to improve communication between healthcare professionals and patients?

Barbara said these are very exciting times for the diagnosis and treatment of CRC. “What is happening now is fantastic. I do believe this work will have very important results for colorectal cancer patients for the future.”

She was invited to work as the patient expert in groups with health professionals, scientists and researchers and another patient. “We discussed the issues from every angle and then the results went for evaluation.

“Then I was involved in a second stage which was just patients and our results went to another evaluation.

“I went to three meetings in London, had several tele-conferences and very many emails were exchanged.”

She said the project was “absolutely spot on” and “really looking at what needs to be done” to reduce the number of people dying from CRC.

“The important thing about what Bowel Cancer UK has done is that it has been published in GUT (Gut is a monthly peer-reviewed medical journal on gastroenterology and hepatology. It is the journal of the British Society of Gastroenterology and is published by the British Medical Journal Group). It has to be spot on for that and it will go worldwide.”

She said one of the important developments in CRC treatment is precision medicine and use of biomarkers to help identify which treatment is suitable for each individual patient.

“There is no point having wonderful medicines without having biomarkers.”

Barbara also made a video for Bowel Cancer UK to help raise awareness of the condition and the need for more research to find better treatment and a cure. The video can be seen on Youtube at https://www.youtube.com/watch?v=duyN_eh3C6Q&t=1s

Professor Mark Lawler, lead author and chair in Translational Cancer Genomics, Queen’s University Belfast, said: “This report provides us with a unique road map for bowel cancer research to make an impact, informing and influencing future research ideas, underpinning appropriate research strategies and directing funding allocation to where it is most clearly needed.

“We have identified the key research priorities that have the greatest potential to benefit patients over the next five years and beyond.”

“This landmark report is the step change needed to energise the research community to stop this deadly disease in its tracks.”

Deborah Alsina, chief executive of Bowel Cancer UK, says: “The harsh reality is that every year 16,000 people lose their lives to the disease, and if left unchecked, this number will only increase in the future. The need for speed prompted us to take action to identify a plan to accelerate bowel cancer research.

“This report will act as a catalyst to encourage much needed collaboration, build research capacity and help shape the future of bowel cancer research. Through strategic investment in targeted research, we will deliver improvements for bowel cancer patients.

"By 2028 we want to see the number of people surviving for at least five years to increase from 60 per to 75 per cent, this means thousands more people surviving bowel cancer each year. This will take us one step closer to our long term goal, that by 2050 no one dies of bowel cancer.

“Research is the key to finding the cures to bowel cancer.”

Factfile

Bowel cancer is treatable and curable especially if diagnosed early. Nearly everyone diagnosed at the earliest stage will survive bowel cancer. However, this drops significantly as the disease develops. Early diagnosis is vital to saving lives.

The symptoms of bowel cancer include:

• Bleeding from your bottom and/or blood in your poo

• A change in bowel habit lasting three weeks or more

• Extreme tiredness for no obvious reason

• Unexplained weight loss

• A pain or lump in your tummy

Most people with these symptoms don’t have bowel cancer. Other health problems can cause similar symptoms. But if you have one or more of these, or if things just don’t feel right, go to see your GP.