Monday 7th November

Patient Story

Spinal sarcoma is a rare and difficult diagnosis. It is not diagnosed easily and is often missed multiple times before diagnosis.

Joanne [name changed for anonymity] is a patient diagnosed with osteosarcoma of the spine after several weeks. After four visits to A&E, an MRI scan was performed on which a lump was identified on her spine. The tumour was removed in an intense 13 hour surgery after which she then had extensive chemotherapy leaving her with sepsis. Following this she had 37 proton beam therapy treatments to ensure her tumour was entirely removed. She now suffers with neuropathy, weakness in the legs and muscle spasms.

Joanne's story is just one of many; spinal sarcoma is a diagnosis associated with a long and painful journey which we hope to change.

The initial survey is now closed. We received several valuable responses from a range of people, and an update on our findings will be uploaded soon!

Vislesha Vinjamuri (PSP Intern)

Thursday 8th September

Blog Post with Sarcoma UK!

We have recently published a piece about our project with the sarcoma charity Sarcoma UK! Sarcoma UK are an excellent source of support for all sarcoma patients in the UK and also conduct ground breaking research in the field. They are also one of the charities we are conducting the priority setting partnership in collaboration with.

The blog post is available here!

Vislesha Vinjamuri (PSP Intern)

Thursday 1st September

Our Progress

We have heard from several of you on what you would like to see in future research! Thank you for taking the time to fill out our initial survey - your input is really important to shape the future of spinal sarcoma research! Please continue to share the survey link to your networks and encourage them to respond! The survey deadline has been extended to 30th September so don't miss out! Your opinion matters!

Vislesha Vinjamuri (PSP Intern)

Tuesday 16th August

Radio Brockley Interview!

We spoke to Keith Reeve from Radio Brockley about the spinal sarcoma priority setting partnership. We spoke about the initial survey which is live now and covered why the PSP is important to shape future research!

The podcast is available now here on the Radio Brockley Website and via Apple podcasts and Spotify!

Catherine Siddiqui (PSP Coordinator), Vislesha Vinjamuri (PSP Intern)