July is International Sarcoma Awareness Month, which aims to raise awareness about this disease.1 This event is dear to me, because I lost a friend to sarcoma a few years ago.
Prior to 2011, I never knew what sarcoma was. In November 2010, my friend Paul started complaining about a small lump on his back. What was originally diagnosed as a hematoma from playing rugby was later revealed to be sarcoma. “Sarcoma? Never heard of it” – was my initial thought. I have since learned that sarcomas are rare forms of cancer that can affect the connective tissues in almost any part of the body. They are of two main types: bone sarcomas, which develop in bone tissue, and soft tissue sarcomas, which develop in supporting or connective tissue. Bone sarcomas commonly start in the legs, whereas soft tissue sarcomas frequently originate in the limbs or trunk of the body. Symptoms of sarcoma can include body swelling, lumps that increase in size over time. In more advanced stages of the disease, patients may also experience pain.1 Sarcomas are normally diagnosed with a biopsy and treated with surgery, with the aim of removing the cancerous tissue. This is often followed by chemotherapy, radiotherapy, or a combination of the two, in order to prevent the cancer spreading to other parts of the body.2
On the day of his 27th birthday, Paul was diagnosed with a very aggressive type of soft tissue sarcoma. He quickly received chemotherapy, followed by blood transfusions. Prior to Paul’s diagnosis, sarcoma never received any major media coverage that I could remember, so initially I didn’t realise how serious this news was. As the lump on Paul’s back was originally thought to be a sports injury, I naively believed the two were similar, still thinking it couldn’t be that serious. The months that passed proved otherwise and the severity of Paul’s condition became apparent.
One thing I learned pretty quickly about sarcoma was that getting diagnosed as early as possible can be life-saving. Disease awareness is essential to improve early diagnosis of sarcomas, as the earlier the disease is diagnosed, the higher the chances are of successful treatment.1 Even though 20% of sarcomas are treatable with surgery and 30% of sarcomas are treatable with chemo- and/or radiotherapy, the remaining 50% of sarcomas are not treatable with current approaches, highlighting the importance of research and development of new treatments.3 In view of this, a number of clinical trials are currently open and recruiting sarcoma patients in the UK.4
Throughout his treatment Paul remained positive, constantly telling us that he would ‘solider on’ and that he would strive to raise awareness, so that no one else would be left in the dark. Unfortunately, treatment proved unfruitful. Paul’s battle was short, but devastating: 11 weeks after his diagnosis, Paul sadly passed away. Shortly after, Paul’s father fulfilled his son’s dying wish, bringing to life ‘Paul’s Campaign’, a charity with the aim to get across to as many people as possible the vital need for early detection and diagnosis of sarcoma. From a demonstration on the steps of Northern Irelands parliament building at Stormont, to a walk around Derry’s City Walls emblazoned in the colour yellow, supporters of ‘Paul’s Campaign’ have pushed for more public awareness of sarcoma.
You can help to raise the profile and understanding of sarcoma by visiting the Sarcoma Awareness official website for more information. You can also support ‘Paul’s Campaign’ by visiting their Facebook page here for more information.
1. Sarcoma UK website, Sarcoma Awareness Week 2017 section. Available at https://sarcoma.org.uk/get-involved/SAW Last accessed June 2017
2. The Liddy Shriver Sarcoma Initiative website. Available at http://sarcomahelp.org/index.html?tpm=1_2 Last accessed June 2017
3. Eric D. Davis Sarcoma Foundation website. Available at http://www.ericddavisfoundation.org/what-is-sarcoma/ Last accessed June 2017
Sarcoma UK website, Clinical trials section. Available at https://sarcoma.org.uk/support-information/clinical-trials Last accessed June 2017