Cancer breakthrough: Patients can join fight to find cure for rare tumours

Chris Evans discusses bowel cancer and Deborah James' death

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A pioneering project is studying the DNA code of 1,500 sufferers. Building a better understanding of around 100 different types of sarcoma will help doctors diagnose cases earlier and identify the best personalised treatments. But Prof Adrienne Flanagan, who leads a team of 30 researchers at the University College London Cancer Institute, said: “We need more samples donated so our research can continue.

“Having a ‘critical mass’ of data from each of the different sarcoma types will help us understand why sarcoma develops. If we can continue to learn more about the different types of tumours and what makes each one different, we’ll be able to offer patients tailored treatments for their particular tumour type.”

Sarcomas begin in the bones and soft tissue and affect around 5,300 people each year in the UK. Only 55 percent of patients are expected to live for more than five years after diagnosis.

Progress has been hindered by the rarity of sarcomas, which make up just one percent of the UK’s cancers. Understanding which gene mutations are driving the disease helps doctors select drugs that are most likely to be effective.

It can also allow family members to be screened and their risk assessed.

The NHS is rolling out whole genome sequencing for certain conditions including sarcoma.

But Prof Flanagan said a lack of awareness of the benefits meant patients may not be inclined to consent to the testing while reeling from the shock of a diagnosis.

With the support of Genomics England, she is urging the public to help spread the word about the importance of genomic medicine during Sarcoma Awareness Month this month.

Prof Flanagan said: “It can sometimes be difficult to approach patients, particularly if they are children, when they’ve just been given a rather horrible diagnosis. If there was greater awareness of the benefits of this type of work, we could learn more about these cancers more rapidly.

“Doctors can play a vital role in offering this test to more suitable patients and their families and, by doing this, provide a larger pool of data for researchers to be able to learn more about the disease to benefit participants.

“If we don’t do this work, we will be in the same position in 40 years time.”

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