Urgent action needed to improve survival rate of people with rare cancers, campaigners say

Campaigners are calling for urgent action to close the “gap” in cancer care to give all patients an equal chance of survival.

There are approximately 200 types of cancer, with the ‘big four’ of lung, bowel, prostate, and breast accounting for more than half of new cases of cancer in the UK.

Medical professionals are very aware of the signs and symptoms of the ‘big four’ so refer to specialists quickly so treatment can begin.

This is seldom the case with rare cancers, with sufferers often fighting for months or years before they receive any kind of diagnosis.

And by the time they are diagnosed the cancer has often spread far beyond where it started.

This is what happened to Dave Howard, who is originally from Liverpool and now lives in Manchester. He has a very rare neuroendocrine cancer which started in his small intestine, and then progressed to his liver. It has now also spread to his lymph nodes and his bones.

For four years doctors sent him away as they just said he had a food allergy.

The father-of-two said: “If it had been picked up sooner, they could have stopped it spreading all over my body, and now I’m inoperable and incurable.

“It’s so hard to diagnose this condition because not many people know about it.

“They’re extremely amazing, GPs, and they’ve got vast more knowledge than what I’ve got, so I can’t really say anything, really. [Maybe I’d say] just look at the bigger picture.

“Definitely not the mental health side, or maybe even just start with simple samples again, like all it was [that detected the cancer] was a stool sample.”

And teenager Alissa Bowman is fighting a brain cancer that is so rare it doesn’t have a name after first noticing symptoms last summer including being thirsty all the time.

Back then blood tests ruled out diabetes so medical staff just said to “see if it passes”.

Charities supporting people like Mr Howard and Miss Bowman say the lack of knowledge about rare cancers causes a lot of issues.

Neuroendocrine Cancer UK chief executive Catherine Bouvier Ellis said: “Approximately 6,000 people are diagnosed with neuroendocrine cancer each year, but awareness of the disease remains low amongst both healthcare professionals and the public. 

“At Neuroendocrine Cancer UK we are all too aware of the additional challenges that patients with a less common cancer face. 

“This frequently results in delayed diagnosis and limited understanding of patient care. It also receives far less funding for research which means improved understanding of the disease and treatment development is slow to advance. 

“This gap needs to be addressed so those with cancer, regardless of how common it is, get equitable attention and support and this is what we strive to do for the neuroendocrine cancer community.”

A Brain Tumour Charity spokesperson said: “Right now, around 88,000 people in the UK are living with a brain tumour, yet changes in survival rates have barely improved in 40 years compared with other cancers, investment in research is low, clinical trials are few and far between, and diagnosis is still taking much too long.

“The Brain Tumour Charity is tackling this issue on three fronts: by funding pioneering research, providing support services and by campaigning to raise awareness of this unforgiving disease.”

And Dr Rubina Ahmed, the director of research, policy and services at Blood Cancer UK said: 
“Collectively blood cancer is the third largest cancer killer in the UK. 

“Sadly, many types of rarer blood cancers have lower survival rates than the more common cancers.

“This is partly because rarer cancers don’t typically have as much research investment, and it can be more difficult to carry out the research.  With fewer researchers working on rarer cancers and less knowledge of the mechanisms of the disease, research breakthroughs often lag behind other cancers.”

Dr Ahmed added: “People with rarer cancers can often face limited treatment options. Rarer diseases can be less attractive to pharmaceutical companies as fewer patients would benefit from often costly treatments.

“For many this can feel deeply unfair, and at Blood Cancer UK, we’re committed to raising awareness and funding research to ensure everyone, regardless of their blood cancer type, receives the care and treatment they deserve.” 

A Department of Health and Social Care spokesperson said: “This government has inherited a broken NHS, with Lord Darzi’s investigation finding that the UK has higher cancer mortality rates than other countries. 

 “We’re committed to turning the NHS around, including for those living with rare cancers, by increasing the number of scanners available, so that patients are diagnosed and treated on time. 

“As part of our ten-year plan to radically reform our broken NHS, we will fight cancer, including rare cancers, on all fronts, from prevention, to diagnosis, treatment, and research.”