Agonising wait for sarcoma cancer diagnoses

Patients facing agonising wait for sarcoma cancer diagnoses ‘unacceptable’, says Jess Philips

Sarcoma UK, the national bone and soft tissue cancer charity, is calling on the Government and NHS to take strong action in a new report that showcases how delays to sarcoma cancer diagnoses are costing patient lives.

Backed by Jess Phillips, Member of Parliament for Birmingham Yardley and Shadow Minister for Domestic Violence and Safeguarding, the new report launched today, Delays Cost Lives, highlights how poor awareness of symptoms among the public and healthcare professionals, made worse by a complex diagnostic pathway, means that sarcomas often go misdiagnosed or are simply ignored and dismissed.

Shockingly, four in ten (39%) were told at their first appointment with a healthcare professional that their symptoms were not serious, or were started on a treatment for another condition [1].

Jess Philips MP, lost her mother Jean Trainor to a form of sarcoma, leiomyosarcoma, in 2008 after a year of being misdiagnosed and treated for deep vein thrombosis. She says: ‘There is no excuse for the unacceptable delays that so many face in diagnosing the cancer that killed my mother. Opportunities to fully investigate her symptoms were not taken despite twelve months of endless hospital appointments; she was only diagnosed after a fluke accident on holiday.

‘No one should ever find themselves in the position my mother did nine years ago. People are still needlessly losing their lives to this disease and will continue to do so if change doesn’t take place and sarcoma is diagnosed earlier. The starting point for that begins here.’

Sarcoma patients face agonisingly long waits for an accurate diagnosis of their cancer with one in three (30%) patients in the UK waiting at least six months after first consulting a healthcare professional [1].

The later sarcoma is diagnosed, the fewer options available for treatment and the higher the chance of that treatment not working. However, this situation is amplified with sarcoma, given the very limited number of treatments currently available.

Sarcoma is one of the least understood but most aggressive forms of cancer, and can affect any part of the body. Around 15 people a day are diagnosed with sarcoma in the UK and symptoms can be vague – often a growing, possibly painful lump, or bone pain. Currently, only 55% of patients survive more than 5 years.

To ensure that patients are diagnosed earlier, Sarcoma UK recommends:

- That health professionals receive more education about sarcoma
- Public awareness is increased – currently, only 25% of adults in the UK can describe sarcoma correctly [2]
- Effective and efficient referral for scans – as soon as a sarcoma is suspected patients should be referred to a sarcoma specialist centre

Richard Davidson, Chief Executive of Sarcoma UK, says: ‘Treatment for sarcoma already lags behind other more well-known cancers and late or inaccurate diagnosis is only making matters worse. Being diagnosed with any cancer is an isolating and lonely experience, which is further amplified for sarcoma patients who have to wait a painfully long time for a diagnosis. At a time where the pandemic has hugely disrupted cancer care for so many patients, we need to do better for sarcoma patients.’

Delays Cost Lives: A call to policy makers to improve early diagnosis of sarcoma is available on the Sarcoma UK website at www.sarcoma.org.uk/delayscostlives

References

[1] Delays Cost Lives: A call to policy makers to improve early diagnosis of sarcoma, Sarcoma UK

– One in four comes (39%) from 22% of patients being told their condition isn’t serious and 17% of patients begin treatment for another condition.

[2] National Sarcoma Awareness 2020, Sarcoma UK

About sarcoma

- - Sarcomas are uncommon cancers that can affect any part of the body, on the inside or outside, including the muscle, bone, tendons, blood vessels and fatty tissues.
  - 15 people are diagnosed with sarcoma every day in the UK. That’s about 5,300 people a year.
  - There are around 100 different sub-types of sarcoma.

About Sarcoma UK

Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma and campaigns for better treatments. It is now one of the biggest funders of sarcoma research in the UK, having invested more than £3.5 million to 52 research projects to date. Sarcoma UK’s Support Line has helped more than 2,100 individuals through calls, emails and texts since 2016.