Ethnic Minority Cancer Awareness Month (EMCAM), previously Ethnic Minority Cancer Awareness Week (EMCAW), is when the community comes together to raise awareness of cancer within Black and Minority Ethnic communities in Britain, taking place in July. National Sarcoma Awareness Project is conducted every year to raise Sarcoma Awareness amongst medical students and Foundation year doctors. July is sarcoma awareness month.
Sarcomas are malignant tumours derived from mesenchymal cells (bone, cartilage, blood vessels, muscle, fat, nerves and connective tissue, including that present in the organs), and can develop at any site in the body. There are many different types of sarcomas, but they are usually grouped into soft tissue sarcomas or bone sarcomas. Sarcomas are rare cancers: the 21st group of cancer in descending order of incidence. Due to its rarity, a GP can expect to see only one or two sarcomas in an entire career. There are approximately 4630 soft tissue sarcomas and 670 bone sarcomas diagnosed each year in the UK.
In August 2020, Geeta Patel found a lump the size of her hand on her leg in the bath. Sharing her story on Sarcoma.org UK, Patel said, “I immediately booked an ultrasound via the GP. After multiple X-rays, MRI scans, and biopsies, they confirmed it was alveolar soft part sarcoma. After a full-body CT scan, they also confirmed that I had multiple bilateral tumours in my lungs, and it was unfortunately at stage 4. This means it is incurable.
“Since my diagnosis, I have had surgery on my right leg to remove the lump, as well as the muscle around it, so my full hamstring has now been removed. I also had six weeks of radiotherapy in the area and 16 rounds of immunotherapy which unfortunately didn’t work. I was then declined a clinical trial and put on palliative end-of-life care with no further treatment. However, I didn’t give up and continued to push for the trial. This was granted in March 2022 and thanks to this phase three clinical trial my lung tumours are now stable.
“It was difficult to cope, especially during the pandemic, which made hospital visits harder as I had to attend hospital on my own. Despite all of this, my friends and family really helped me get through it, especially my mum and husband Ankush.”
She decided to raise funds for Sarcoma UK through her sponsored walk because sarcoma is so rare. She wants to raise awareness so that people can check lumps all over their bodies, and not just in the most talked about areas.
“Because there is no cure for my type of cancer, I want more research to be conducted into sarcoma, to hopefully find a cure and to understand the disease more, as other cancers are more common. There are more ways to manage other types, but I hope it will be possible to find something that manages cancers like mine, and hopefully gets rid of them,” Geeta added.
A rare form of cancer
Dr CR Chandrasekar is a Consultant Orthopaedic Oncology Surgeon at Royal Liverpool and Broadgreen University Hospitals NHS Trust with a keen interest in raising sarcoma awareness. Speaking to Asian Voice, he said,“It is unsurprising to read in the press about delayed or missed cancer diagnoses, especially with rare cancers like sarcomas. Often the story is presented as one of wilful neglect on the part of healthcare professionals, who purportedly fail to perform their duty of care. These professionals, with much medical experience, many years of training and a genuine desire to help patients, don’t set out to deliberately delay the diagnosis of a rare cancer like sarcoma. Factors including the rarity of the condition (the average GP might see one or two new sarcoma patients in their career) and the lack of training, which can lead to an incorrect diagnosis, make it exceedingly difficult to ensure early diagnosis. Furthermore, sarcoma is a rare cancer, affecting about 3800 patients per year in the UK.
“The main difficulty in ensuring the correct identification of sarcomas arises from the lack of relevant information provided during medical training. Unfortunately, because of the rarity of sarcomas, education about them is unlikely to become a part of the undergraduate medical curriculum. This may mean many doctors qualify with little or no knowledge of sarcomas and will subsequently be unable to correctly identify them and recommend the necessary treatment. As the saying goes: what the mind does not know, the eye cannot see.”
According to him, for most patients, the possibility of a cancer diagnosis is also a cause for fear, resulting in a reluctance to seek medical advice about what is deemed a strange swelling. Hence, it is important to emphasize that sarcomas are treatable, especially when diagnosed early, and that there are a number of people who have been cured.
Having the tests does not mean that you have cancer
ABPL Group held a special virtual event to mark Ethnic Minorities Cancer Awareness Month and discuss Breast Cancer Awareness. Dr Toral Gathani is a Senior Clinical Research Fellow in the Cancer Epidemiology Unit of the Nuffield Department of Population Health, University of Oxford and a Consultant Oncoplastic Breast Surgeon at Oxford University Hospitals NHS Foundation Trust. Speaking at ABPL Group’s special virtual event to mark Ethnic Minorities Cancer Awareness Month and discuss Breast Cancer Awareness, Dr Gathani said, “Breast cancer is common among ethnic minority women. And even though Indian women are less likely to get breast cancer compared to white women, it is still the most common cancer that is diagnosed in Indian women in the UK. The most common problem is a lump. If you feel that there is a lump in either breast or under the arm then it's important that you seek help for that. The other issues can be changes to the nipple, either there is a discharge which can either be clear or with blood or sometimes the nipple can become inverted or have an ulcer for which you need to see a doctor.” However, the doctor mentioned that merely having the tests does not mean that you have cancer. It means that there is a need to just see a little bit more and you mustn't be afraid if there are more investigations.
