July marks Sarcoma Awareness Month and the 10th anniversary of the bone and soft tissue cancer charity, Sarcoma UK. To mark their anniversary, the charity is reflecting on its progress, celebrating its achievements and looking ahead to a future where everyone affected by sarcoma cancer has the treatment, care and support they need.
Sarcoma represents 1.4% of all cancers and 15 people are diagnosed with sarcoma every day in the UK, which is about 5,300 people a year.
Sarcoma is hard to diagnose and hard to treat, which is why it is vital that people are referred to a sarcoma specialist team as soon as possible.
More research needs to be done to fully understand how these cancers develop and spread and how best to diagnose and treat them. People can survive sarcoma if their cancer is diagnosed early when treatments can be effective and before the sarcoma has spread to other parts of the body.
Last year, Sarcoma UK produced Delays Cost Lives, a report highlighting how poor awareness of symptoms among the public and healthcare professionals (HCPs), made worse by a complex diagnostic pathway, means that sarcomas often go misdiagnosed or are simply ignored and dismissed.
Delays to sarcoma diagnosis cost lives. Early diagnosis is one of the key drivers for improving survival. The earlier a sarcoma is diagnosed, the more likely treatment is to be successful. One of the reasons for this is that there is an increased range of treatment options available to patients as they are more likely to meet health criteria for clinical trials.
Early diagnosis aims to catch cancer sooner and reduce the number of patients who are diagnosed at a later stage. The majority of people are diagnosed when their sarcoma is about the size of a large tin of baked beans (10cm).
It is commonly accepted that Stages 1 and 2 are considered to be early stages, as the cancer has not spread to anywhere else in the body. Once the cancer has spread then chances of survival significantly decrease and is less likely that patients will have curative treatment.
Some of the key findings, taken from the National Sarcoma Survey 2020 highlighted in the report, include:
- Almost a third (30%) of sarcoma patients in the UK who responded to the charity’s National Sarcoma Survey 2020, said they waited six months to receive an accurate diagnosis of their cancer after first seeing their HCP. One in six sarcoma patients (17%) in the UK waited more than a year for an accurate diagnosis.
- A third of sarcoma patients (35%) had to see an HCP more than three times before they were referred for further tests.
- Poor public and healthcare professional awareness of sarcoma and its symptoms, and a complex referral/diagnostic pathway is potentially costing lives.
Hope from clinical trials
Jane Lochrie, a wife and mum of two from East Kilbride, Scotland, had a GIST tumour removed in May 2016. Jane went on a clinical trial testing avapritinib, which she responded well to; her tumour shrunk by a huge amount and she will be on the drug indefinitely.
Originally, it was suspected that she might have ovarian cancer and she was to have a hysterectomy. However, when she was operated on, they found a tumour on the tummy weighing in at 4.5 kilos and 40cm long.
Jane says: “The doctors told me I was just fat! Other people thought I was pregnant… We all want a cure for cancer and less destructive treatments for patients. A clinical trial was my only option of getting control of my cancer. More than that, it enables consultants and scientists a way to get information and results about sarcoma treatment they so desperately need. So, I knew that whatever happened to me – this trial was good, it was the right thing to do.”
Without access to treatment, Jane’s sarcoma will return. Jane says: “My hope for the future is to stay cancer free, but this trial for avapritinib will help everyone affected by sarcoma so, I just fight on, fighting the good fight.”
Bradley Price, Policy and Public Affairs Manager says: “The earlier a sarcoma is diagnosed, the more likely someone is to survive and have a better chance of having curative treatment, but also being able to access the treatments of the future through clinical trials.
“There is a serious need for more effective and kinder sarcoma treatments. Sarcoma UK would like to see more research into new sarcoma treatments, and further compassionate use programmes for medicines undergoing trials, so that those who would otherwise go without are able to access a potentially life-extending treatment.”
Richard Davidson, Chief Executive of Sarcoma UK says: “It’s heart-breaking hearing time and again how sarcoma has devastated the lives of patients, carers and families. We have a unique coming together of multiple factors, a cancer that few have heard of, frequent difficulty in getting diagnosed, limited treatment options and a lack of emotional support. That’s the harsh reality faced by so many people affected by sarcoma and it has to change.
“The pandemic and the subsequent disruption to cancer services will have only made matters worse. Mental health support should be available at regular stages throughout diagnosis and treatment for both patients and carers. They should be signposted to support, emotional or even financial, that is available to them. It’s telling that when we asked family and carers what the biggest improvements to sarcoma services should be, support was the most popular choice.”