Before you read further, be warned that there is a distinct lack of healthcare professional awareness in Jo’s story, which is one of the biggest reasons for delays in diagnosis. We are, therefore, carrying out several projects to help our healthcare professionals to identify sarcoma earlier. This is not an easy task – sarcoma is uncommon and its symptoms can be much like other diseases. But we have to try.
Jo’s pathway to diagnosis was too long and too painful.
- Jo told various GPs between 2017 and 2020, that she suffered from IBS in her twenties, but this pain was different. Jo would get severe, 24/7, debilitating, pain that could leave her unable to get out of bed for seven days at a time. In November 2020, Jo pleaded to be referred for scans and blood tests. The GP insisted on a stool sample, which went missing.
- Jo called again, as she was in so much pain. She spoke to a locum doctor in June 2021. Jo described her symptoms exactly as she had numerous times before. The locum recognised it right away and said ‘you need to be seen and you need to be seen now. It might not be serious, but it may well be’. The locum referred Jo to her local gynae hospital and to the bowel clinic.
- Jo spoke to a bowel surgeon over the phone and explained the symptoms and the impact on her life. He told her it doesn’t sound at all serious to me, as you aren’t bleeding or losing weight. He said because it had been going on for so long, he’d scan her and send her for blood tests.
- Jo received a phone call from the bowel surgeon who said, ‘I’m so very sorry, it’s very serious, you have a number of tumours, which appears to be from your ovary, so I’m going to refer you on.’
Jo phoned the bowel surgeon late August to ask if she had a bowel condition, as well as the problems with her ovaries. He said ‘Do you understand what I told you on Wednesday? You have ovarian cancer, which is extensive, and it has spread and that’s what you need to be thinking about’. - After an agonising wait, two weeks later, Jo had a biopsy. A week later, Jo saw a registrar who told Jo it wasn’t ovarian cancer, but that they didn’t know what it was. She said they needed to speak to more people, but it’s ‘definitely cancer and it is inoperable, incurable, and extensive. It’s in your liver and all over your peritoneum and part of your stomach has collapsed and it’s basically everywhere’. Jo was told she could have chemo as palliative.
- The oncologist called Jo within the week to tell her it was sarcoma. Jo asked what that was. The oncologist said, ‘I really don’t know anything about sarcoma and you’re going to have to wait to be referred to someone else’.
- Jo went into the hospital for her appointment and was told it was endometrial stromal sarcoma (ESS). She was told her ‘only option was hormone therapy, but it would only work for a few years, and you won’t know for 12 months if it will work. It may slow the progress and if you’re very lucky it may shrink it. But this is only for a short time’.
- Jo felt that even though sarcoma is rare, particularly the sarcoma she was eventually diagnosed with, her symptoms mimicked those of other cancers. Therefore, the focus should not have solely been on the IBS misdiagnosis, even if the doctors didn’t think of sarcoma. Jo has been told that her ESS was there for years and years, as it’s a very indolent disease and rarely gets outside the womb, but for Jo it has travelled far and is in her liver and peritoneum.
We don’t want any more stories like Jo’s.
GPs are often seen as the gateway to diagnosis, and this is certainly the case with sarcoma, where they are most often the first point of contact for sarcoma patients. Sarcoma is uncommon and can present like other diseases, meaning that GPs can sometimes struggle to identify it. When GPs are unaware of its symptoms, patients are told that their symptoms are an incorrect diagnosis.
Consequently, we have worked with GatewayC, a free online cancer education platform, to develop a module to educate GPs on the signs and symptoms of sarcoma in the hope to improve early diagnosis, increase sarcoma survival, and enhance the patient experience. Only a fifth of sarcomas are diagnosed after an urgent cancer referral from a GP, showing that many GPs do not recognise the signs and symptoms of being that of possible cancer.
The oncologist called Jo within the week to tell her it was sarcoma. Jo asked what that was. The oncologist said, ‘I really don’t know anything about sarcoma and you’re going to have to wait to be referred to someone else’.
We also recognise that medical students are the doctors of the future and will be crucial in diagnosing sarcomas sooner. However, medical students get little training on rare cancers, and even less teaching on sarcoma, which contributes to current problems. Without this knowledge, it is unlikely that they will be able to recognise the signs and symptoms of sarcoma in the future.
We are working in collaboration with the Bone Cancer Research Trust to understand how medical students like to learn independently and to then create and disseminate education resources aimed at medical students. We hope this will ultimately improve the next generation of healthcare professional’s knowledge and understanding of sarcoma.
Jo’s story may be upsetting – and we have not asked her to censor herself – but it’s a story that needs telling if we are to bring about real change in getting people diagnosed earlier. Please join her on Wednesday on instagram.com/sarcoma_uk.
