Desmoid Fibromatosis Paper
Friday, February 14, 2020

Something most people may never notice has just happened, but for people affacted by desmoid-type fibromatotis, it may mean the world.

You work hard to send us donations. You know that we use your money to provide support on the Support Line and you know that we invest a lot on research into sarcoma. But your support also allows us to bring about real change in other, less obvious ways.

We try to bring people together. We know that we are one small but important part of a much bigger movement across the world to make life better for people affected by sarcoma today, and one day get rid of it entirely.

We can't - and don't - do this alone. Which is why we want to share the publication of this paper on desmoid tumours in the European Journal of Cancer. Click on the link and you'll see a scientific paper. No snazzy photos; no catchy titles. Just a paper that's been written by the 'Desmoid Tumor Working Group'.

Scientific papers are pumped out all the time and they are not aimed at the general reader, but in this case, this publication represents a huge, huge change for people affected by desmoid tumours. 

Desmoid tumours are unusual tumours. We can't classify them as cancerous because they don't metastasise (that is, they don't spread to other parts of the body). They are often treated with surgery, but we have learned that surgery is not always the best option. 

In 2015, a group of experts, including doctors, nurses, researchers and charities from Europe, North America and Japan came together to share their experiences of treating desmoid tumours, or desmoid-type fibromatosis as it's also called. These experts all had individual experiences, but never had to opportunity to share what they knew. One of those experts was Sam Hackett, sarcoma specialist nurse on the Sarcoma UK Support Line

When they came together, they learned that surgery is not always the best option for the patient. They agreed in fact that 'Watchful Waiting' is a more effective approach. 'Watchful Waiting' means keeping a close eye on a desmoid tumour. If it stays the same or shrinks, let it be, rather than risk surgery that might make things worse. 

It doesn't sound that revolutionary, but it is. There's never been a paper offering guidance to a worldwide audience of experts, filled with real examples from real patients. Now there is. From now on, a doctor or nurse anywhere in the world can search for 'how to treat desmoid tumours' and this paper will appear. 

This is a step change for people affected by desmoid fibromatosis. It will save lives. And you helped make it happen.  We truly are #StrongerTogether.

Thank you.

The first UK patient conference for desmoid-type fibromatosis takes place in March, and will feature a talk by Lucy Dean, lead sarcoma physiotherapist at the Royal Marsden and one of the inaugural winners of our Tricia Moate AwardFind out more. 

Support our work.

Read more about desmoid-type fibromatosis.

Read a version of the paper for patients.

Download Understanding Desmoid-type fibromatosis patient guide. 

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