'I remember thinking to myself at what point do I give up? My whole world was just spinning...'
Agonising levels of anxiety, depression as well as having to give up full-time education or employment are some of the ways sarcoma cancer is destroying lives according to the results of the largest survey of people affected by sarcoma in the UK.
Even prior to the Covid-19 pandemic, one in four (25%) patients who responded to Sarcoma UK’s National Sarcoma Survey 2020 said their mental health had been ‘severely affected’ as a result of being diagnosed and treated for sarcoma. Almost all (90%) patients said their mental health had been ‘negatively affected’.
Shockingly, a quarter (24%) of carers and family members of sarcoma patients said they spent 50 hours or more in a week - more than a full-time job - providing care and support to the patient. Additionally, one in five (18%) carers or family members had to stop work or education permanently in order to care for their loved one with sarcoma.
Almost all carers (94%) said that they felt either depressed or anxious more often or constantly since the sarcoma diagnosis.
Lisa Hall, 57, was diagnosed with a form of bone cancer known as dedifferentiated chondrosarcoma in July 2019. In January 2020, she had an amputation of her left arm and shoulder following multiple recurrences. She says: ‘I had never heard of sarcoma before, it genuinely felt like no one had and that made me feel so isolated. Even my GP had no real experience of it. My mind was in complete turmoil. The independent, outgoing, chatty woman I used to be was gone.
‘They said to me the only way forward was amputation. I remember thinking to myself at what point do I give up? My whole world was just spinning and it felt like I had lost my personality. The independent, outgoing, chatty woman I used to be was gone. It’s so important to speak to people with knowledge, knowing that that there are people at the end of a support line who can help, that’s what made the difference.’
Fifteen people a day are diagnosed with sarcoma in the UK. Treatments for sarcoma, which can develop almost anywhere in the body’s bone and soft tissue, are often limited to surgery, chemotherapy and a very small number of drugs. Sarcoma lags behind many other cancers that have newer, more targeted treatments available.
Poor public and healthcare professional awareness also contributes to anxiety about living with this cancer. Three quarters of UK adults do not know what sarcoma is, whilst Demand early diagnosis, a report released in June 2020 by Sarcoma UK, highlighted that one in three sarcoma patients waited six months from first talking to a healthcare professional to receiving a sarcoma diagnosis.
Sarcoma patients have also frequently reported poorer care experience than those with other cancer diagnoses over the last seven years, according to NHS England’s annual National Cancer Patient Experience Survey.
Although these effects of living with sarcoma are not exclusive to this cancer type, the scale and range at which they do has long-term mental health consequences on sarcoma patients and carers in the UK. Getting the right support at the right times can allow patients to better understand sarcoma and ask the right questions. Yet 45% of patients said they were not given enough information when they were first diagnosed, with a similar number (two in five patients), feeling they were not given enough emotional support throughout the duration of their treatment.
Dr Rachel Taylor, Director of the Centre for Nurse, Midwife and Allied Health Profession Led Research (CNMAR) at University College London Hospitals NHS Foundation Trust, says: ‘Our research funded by Sarcoma UK exploring the experiences of patients living with a sarcoma diagnosis has shown us the full extent of the emotional impact sarcoma has throughout a patient or their carers’ journeys.
‘Having an uncommon cancer can present challenges, such as being diagnosed early, making sure patients are being treated by the right specialist team and the fear from patients that their sarcoma could come back. We can’t fix these problems overnight, but we are working with patients and healthcare teams to develop ways for helping patients manage these fears.’
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.’
The full report, Impact of Sarcoma: The National Sarcoma Survey 2020 is available now.
Find out more about policy at Sarcoma UK including our pledge to push for better access to the appropriate psychological support for sarcoma patients and their carers