Deborah James’ Campaign Increases Bowel Cancer Awareness

Deborah James, also known online as Bowelbabe, sadly passed away at the age of 40 from terminal bowel cancer. Deborah was diagnosed with bowel cancer in December 2016 after experiencing a six month change in bowel habit including passing blood in her stool, opening her bowels more frequently and losing weight.

At the time of diagnosis, Deborah’s cancer was stage 4 - the most advanced stage - meaning it had spread to other parts of the body. She underwent extensive treatment, including numerous invasive surgeries, and spent the rest of her time campaigning and raising awareness about her condition, by sharing her story via the BBC “You, Me and the Big C” podcast and her social media platforms. Set up in the weeks preceding her death, her fund for Cancer Research UK reached over £7.3 million.

In the weeks following Deborah’s death, NHS chief executive Amanda Pritchard reported that thousands more people had checked bowel cancer symptoms on the NHS webpages. On Wednesday 2 July 2022, the number of visitors to these pages increased tenfold from 2,000 to 23,274, compared with the day before.

Bowel cancer affects almost 43,000 in the UK each year and it is the fourth most common cancer in the UK. Depending on where the cancer starts, bowel cancer is sometimes called colon or rectal cancer.

More than 94% of cases are diagnosed in people over the age of 50, whilst 59% are diagnosed in people aged 70 or over. However, it is important to remember that bowel cancer can affect anyone of any age, as in Deborah James’ case, and more than 2,600 new cases each year affect people under the age of 50.

Bowel cancer is treatable and curable, especially if diagnosed early. However, survival rates drop significantly as the disease progresses. Sadly, only one in 10 people with stage 4 cancer (the most advanced stage) survive for more than five years after their diagnosis. Bowel cancer is currently the second leading cause of cancer deaths in the UK.

Symptoms

According to the Cancer Research UK website, possible symptoms of bowel cancer can include:

• bleeding from the back passage (rectum) or blood in your poo
• a change in your normal bowel habit, such as looser poo, pooing more often or constipation
• a lump that your doctor can feel in your back passage or tummy (abdomen), more commonly on the right side
• a feeling of needing to strain in your back passage (as if you need to poo), even after opening your bowels
• losing weight
• pain in your abdomen or back passage
• tiredness and breathlessness caused by a lower than normal level of red blood cells (anaemia)

These symptoms can also be caused by a number of other, less serious conditions, but it is important you get checked by your GP if you have any of these symptoms. The chances are that you do not have bowel cancer, but given the importance of the early diagnosis in bowel cancer cases, it is better to consult your GP if you have any concerns.

Treatment

If you are unfortunate enough to be diagnosed with bowel cancer, your treatment will depend on a number of factors including the location of your cancer, the type, the stage (i.e. the size and whether it has spread), and the grade (i.e. the appearance of the cancerous cells under a microscope).

In most bowel cancer cases, the first course of treatment is surgery to remove the cancer. For small, early stage bowel cancer, you may be able to have the cancer removed from the bowel lining, along with a border of healthy tissue. This is called a local resection. For larger cancers, you might undergo a procedure called a colectomy, which involves removing the part of the bowel containing the cancer and joining the two ends of the colon back together. The amount of bowel that is removed will depend on the size of the cancer.

For people with bowel cancer in the very early stage 1, surgery alone may be curative. However, others may also need to undergo chemotherapy to lower the chance of the cancer coming back after surgery (also known as recurrence). Those with advanced stage 4 bowel cancer may, in addition to surgery and chemotherapy, receive targeted and specialised immunotherapy drugs and radiotherapy to reduce their symptoms.

One of the targeted drugs for advanced bowel cancer is Cetuximab (also known by its brand name Erbitux). It is a type of monoclonal antibody which seeks out cancer cells by targeting particular proteins on the cell surface. Cetuximab may be offered alongside a normal chemotherapy programme.

Chemotherapy is delivered in cycles and after each round of treatment you have a break to allow your body to recover. When patients have a break from chemotherapy, they continue to receive Cetuximab alone. Treatment breaks in England from Cetuximab beyond six weeks were prohibited under NHS rules, despite evidence from a clinical trial that showed a break in Cetuximab does not have a negative impact on patient outcome. For any breaks longer than this, funding for treatment was no longer provided by NHS England, which meant patients had to pay for this potentially life-extending medication themselves.

However, Queen's University Belfast in collaboration with Bowel Cancer UK recently carried out a historical analysis of both intermittent and continuous Cetuximab treatment, to determine their impact on quality of life and treatment costs. The research found that a treatment break approach with Cetuximab does not have any negative impact on a patient's quality of life and outcome, but could potentially save up to £1.2 billion for the NHS in England. This research helped to bring about a temporary policy change, which remains in place today, removing treatment break restrictions that occurred during the COVID-19 pandemic. The treatment break rule does not apply elsewhere in the UK

Bowel cancer patient Steve Clark started a petition to scrap the rule completely, something which Bowel Cancer UK are also campaigning for. The rationale behind scrapping the rule is that patients are often forced to discontinue their treatment due to being unable to afford to pay for the treatment privately, even though many need a break longer than six weeks to recover from side effects like painful rashes and nausea, or they require surgical treatment for an unrelated condition such as a hernia, which requires them to stop Cetuximab for more than six weeks.

As well as the seemingly positive impact this would have for patients, the money that could be saved in allowing breaks from Cetuximab is significant, and in a time when the NHS is being pushed to its limit, any money that could be saved and redirected to staffing, training and other resources is surely a good thing.

Coming to terms with a cancer diagnosis is difficult, particularly when there are questions about the standard of care someone has received. If you or a family member considers your care has been affected by a delay in diagnosis of cancer, it is important to explore all the options available to you. Our Clinical Negligence Team at Lanyon Bowdler have experience handling such cases and are happy to discuss the matter with you and guide you through the process sensitively.