Driving research, providing support and improving outcomes for patients and their families affected by rare conditions

The British Sarcoma Group (BSG) annual conference took place on March 22nd – 23rd 2023 in Newport, Wales. We were delighted to attend as an exhibitor to promote our Osteosarcoma Now Trial Explorer (ONTEX) and our 2023 grant funding round. It was also inspiring to hear the latest updates in the treatment of sarcomas. There are many different types of sarcomas. Osteosarcoma (OS) is a type of bone sarcoma.

Genomics and Sarcoma

Understanding the changes in our genetic code that lead to the formation of cancer is important. It can help guide research into the development of new treatments as well as how well a person might respond to a given therapy. A technique called whole genome sequencing (WGS) analyses our genetic code and can look for changes. WGS is now routinely available for people with sarcoma in England. However, there are not enough people accessing this and not enough data being generated. Sarcoma UK have been looking into the barriers for people to access WGS and identified key areas that could be improved to increase the amount of data. They found there was a lack of awareness of WGS in healthcare as well as a lack of perceived benefit for referring patients for WGS. It was also reported that there is no standardised consent process. Getting consent from people to be involved is time consuming and needs to be done properly so the data can be stored and used in the right way in the future. It is also important to think how WGS could be used to link people with clinical trials. There are many clinical trials that are testing new drugs that target a specific genetic mutation. WGS will identify people with these genetic mutations and could be an opportunity to involve them in clinical trials.

The West Midlands Sarcoma Tumour Advisory Board shared real life examples of the utility of WGS. This group had genomics data for 33 people with sarcoma, of which 5 were OS. Based on the genetics data,

  • 5 people were recommended to take part in a clinical trial.
  • 4 people were found to have an inherited genetic mutation and were further referred to see a genetics specialist.
  •  The genetic data made no difference to the treatment of 13 people,.
  • 11 people had the potential to take part in a clinical trial in the future.

This highlights the power that WGS can have in guiding sarcoma treatment.

Sarcoma Surgery

One session of the conference was dedicated to updates in surgery for sarcoma. Surgery is often done as part of routine treatment for sarcoma. Talks were focused on different types or aspects of surgery. Importantly, techniques are being developed to improve outcomes and quality of life for people, particularly those who may need limb amputation. One talk highlighted the case of a person with chondrosarcoma (a type of bone sarcoma) in the ribs. They used 3D printing to create a prosthesis to replace the ribs that had to be removed during surgery. Another talk discussed a case of sarcoma in the thigh that required an amputation of the leg from the hip bone. This is associated with poorer outcomes than an amputation above the knee. However, the bone and tissue below the knee were still healthy and were in fact able to be attached to the hip to form a stump that a prosthesis could be attached to. This resulted in a better outcome for the person.

Palliative Care

We also heard from other patient advocacy organisations about living with incurable sarcoma. Talks from Sarcoma UK and BCRT shared patient and family stories about palliative care. It was clear that there is often a lack of communication to people about what this means and what is happening. For some people, use of the word palliative can have a negative meaning and they think death is imminent when this is often not the case. Evidence suggests that palliative care teams should be introduced as early as possible, but that there needs to be clear communication to everyone about this. Baroness Ilora Finley also spoke about her experiences in palliative care and facing the end of life. She stated that end of life care should affirm life, be person-centred and available 24/7. The person should be listened to and asked what matters to them so their needs can be met.

If you would like to talk to someone about palliative care, we recommend the Sarcoma UK helpline. Their number is free to call within the UK and they offer friendly, expert and confidential advice to everyone affected by sarcoma.

Sarcoma Clinical Trials

Of particular interest to us, were talks about clinical trials.  We heard updates to the ICONIC trial and about a new trial called SarcoSIGHT.

ICONIC aims to collect detailed information from OS patients across all ages to better understand how and why OS occurs. This trial is now open in 24 centres across the UK and has recruited 224 patients so far. Some of the data is being used to look at the type of clinical care a person receives. Particularly, they are looking at the type of scan a person receives. The trial has also received additional funding to recruit more patients and extend the work they are doing. We previously interviewed Dr Sandra Strauss who is leading the ICONIC trial. Watch the interview.

SarcoSIGHT is a new trial that is looking to assess the effectiveness of a fluorescent dye to help surgery. The dye, called indocyanine green (ICG) is taken up by cancer cells. A special camera can be used to view the tumour which can help surgeons ensure they are removing all of the tumour tissue and leaving as much healthy tissue as possible. This should hopefully reduce the chance of the cancer coming back. Watch an interview with Mr Kenneth Rankin, the lead for the trial. This trial is not open for recruitment yet. Sign up to our newsletter to hear updates about clinical trials and the latest research.

Altogether, it was inspiring to hear the latest updates in sarcoma and to see progress being made that has a real impact on people affected by sarcoma. We hope to see this continue and help to bring the community together through collaboration and funding research.