Inform, Empower, Connect

We were delighted to attend the Bone Cancer Research Trust (BCRT) support and information conference on Saturday 21st May. The conference connected patients, family members, scientists and healthcare workers and was an opportunity to learn from one another.

This is the second of a two-part blog sharing some of the lessons learned from patients and the invaluable resources offered by the BCRT for bone cancer patients (this includes osteosarcoma (OS)).

In the first part of the blog, we summarised the research talks, looking at new treatments for osteosarcoma.

BCRT Resources

In 2019, after feedback from patients and families, the BCRT launched its information and support services. Led by Jo Wright and Vina Hajari, the services have gone from strength to strength and offers a range of resources for people of all ages. This includes support groups (virtual and in-person), free telephone support services and a Facebook group where people can connect and share their stories.

The BCRT also provides travel assistant grants and financial support grants to bone cancer patients and their families. Details can be found on their webpage.

As bone cancers occur at a young age, the BCRT created resources specifically for children to help them through a challenging time. They provide virtual storytelling sessions where books are sent free of charge to children and are then read by a professional storyteller.

These are just some of the resources that the BCRT can offer. Visit the BCRT webpage to find out more about their resources.

Lessons Learned

Throughout the conference, several people who had previously had OS took to the stage and shared their experiences.

Charlene described her journey as a BAME (black, Asian and minority ethnic) cancer patient and the lack of mental health support available to her during her cancer journey. She is now working with Black Women Rising, a wonderful charity that aims to educate, inspire and support women from the BAME community throughout their cancer journey. Her experience highlighted the importance of representation in healthcare and that mental health support should be available to everyone.

Adam was diagnosed with OS at the age of 19. 10 years on, he now works for Activity Alliance, a charity dedicated to making sport more inclusive and accessible. In his talk, he discussed his diagnosis, the challenges during and after treatment and the importance of seeking mental health support. His motto was ‘Be Brave, Be Happy, Be You’.

In one talk we heard from both a patient and her doctor. Amelia was diagnosed with OS at the age of 7. Due to the location and extent of her cancer, she required an amputation at the hip. Amputations at this level often result in less mobility than amputations below the knee joint. Her surgeon Professor Jeys (Royal Orthopaedic Hospital) asked her what was important to her and when she replied ‘dance’ he suggested an alternative surgery called rotationplasty. There have been 12 cases of rotationplasty in the UK since 2009. It involves the removal of the upper leg and reattachment of the lower leg backwards. The ankle joint then acts as a knee joint, so it’s as if it is a below-knee amputation (MD Anderson Cancer Centre have a video that explains this further).  The operation was successful and four years on Amelia is climbing, swimming, running and still dancing.

These are just some of the inspirational stories shared at the BCRT Bone Cancer conference. Although each person has had their own journey, each and every person told a story of hope, love and the need to work together to raise awareness and find new treatments for osteosarcoma.

Thank you to the BCRT for inviting us to the Bone Cancer Conference and sharing your fantastic work.