Inform, Empower, Connect

We attended and exhibited at the British Sarcoma Group (BSG) meeting on 23rd-24th March in Liverpool, UK. It was inspiring to learn about the research and resources being created to support sarcoma patients.  We were also delighted to be part of the charity hub alongside Sarcoma UK, BCRT and GIST Cancer UK.  

In this blog we summarise some of the highlights of the BSG meeting.  

The BSG meeting covered all types of sarcomas. Osteosarcoma is a type of bone sarcoma.

A patient’s journey

Luke Grenfell-Shaw kick-started the BSG meeting, joining us from a road in Bangladesh. In 2018 Luke was diagnosed with a sarcoma that had spread to his lungs. After chemotherapy, radiotherapy and surgery he is now completing his dream of cycling 30,000km from the UK to China. Luke’s story was the perfect inspirational start to the meeting.

The importance of early diagnosis

Sarcomas are rare cancers. For example, in the UK around 160 people are diagnosed with osteosarcoma each year. This means that most healthcare workers will only see a few cases in their lives and may miss them. This needs to change. The sooner someone is diagnosed the quicker they can start treatment. This normally leads to better outcomes.  Sarcoma UK has put together a committee of healthcare workers and patient advocates to tackle this problem. This includes a funding call for projects focused on improving early diagnosis. Hopefully, this approach will lead to a faster and more accurate diagnosis of sarcoma and save lives.

Towards personalised treatment

When first diagnosed all osteosarcoma patients are treated in a similar way. However, some patients do not respond to the treatment. Having the tools to predict whether a patient will respond, or how the cancer may progress could be very useful. Professor Adrienne Flanagan explained that the answer to this could lie in the genetic code of the cancer.

Imagine the genetic code as an instruction manual. If we can understand the instructions that the cancer is being given, we may be able to predict how it will act. Some cancers have specific changes in the genetic code. Others, such as osteosarcoma, are far more complex. The genetic code can be analysed through a process called whole genome sequencing (WGS). WGS may advance our understanding of the patient journey, however first the data needs to be collected and analysed.  

WGS is not currently part of the patient treatment pathway and there are no guidelines on when it should be done. It was suggested that tumour samples could be taken for WGS at the same time as the diagnostic biopsy. This would avoid multiple procedures.  However, doctors need to be equipped with the skills to discuss WGS with patients and gain consent. Recognising these obstacles is the first step to tackling them.

WGS of tumour samples will hopefully become a more common practice in the future. The data collected may lead to personalised treatment plans and new therapies being developed.

Update on clinical trials

Dr Sandra Strauss presented the observational study ICONIC (Improving Outcomes through Collaboration in Osteosarcoma). ICONIC was set up in 2019 to collect information from newly diagnosed osteosarcoma patients. Since then, it has enrolled over 100 people in 23 centres across the UK. The scope of this project is impressive. It aims to investigate the whole patient journey. This includes diagnosis, management and quality of life. The results from ICONIC will inform future research, treatments and guidelines.  

The trial is open to newly diagnosed patients of all ages across the UK. Despite the challenges of the pandemic the ICONIC study has opened in 23 centres making it more accessible for patients.

Find out more here.

Update on patient resources

The Bone Cancer Research Trust is a UK based charity that provides information and support for people affected by bone sarcoma. Their new amputation resources provide support and information for people who may be having or have undergone an amputation. They include videos from people who have had amputations. You can view the resources here.

The Fruitfly Collective is a UK based organisation who create resources to help parents and children talk about cancer. The Cancer Clouds toolkits are resources for children and young people whose parents have cancer. You can find out more here.

We were fortunate to showcase our new website, Osteosarcoma Now, at the BSG conference. The website includes resources to help patients navigate the medical world and an interactive map of support groups. We are also developing a curated clinical trial database to make information about trials more accessible.

Katie and Jazzmin working at the Osteosarcoma Now Stand at the conference, The Frutifly collective resources, Katie talking to a conference attendee.

Take-home message

This was the first in-person BSG conference since the pandemic started. It was inspirational to see the work that has been achieved despite a challenging two years. Trials have continued to run successfully and patient groups have adapted to the virtual world. Collaboration has been an essential part of this and must continue because by working together we are stronger.  At Osteosarcoma Now we are working with doctors, researchers and patient advocates to bring the community together.

Lastly, as Luke’s story highlighted you can still follow your dreams even when living with cancer.

Find out more about Luke’s story here.