SARCOMA AWARENESS MONTH 1st – 31st JULY 2021

INTRODUCTION

If you had asked me 6 years ago if I knew what a Sarcoma is, then I wouldn’t have had a clue. It wasn’t until I was diagnosed with the rare cancer, Malignant Myoperyictoma in November 2015 that I understood what Sarcoma’s are.

Sarcomas are a group of rare but devastating cancers of the soft tissue and bones. Only half of the 5,300 people diagnosed in the UK each year will survive for five years. However, not enough is being done to change this troubling statistic. 

Some issues affecting sarcoma patients across the country include late and inaccurate diagnosis, a lack of treatments, and not enough research being done in this area. 

WHAT ARE SARCOMAS ?

Sarcomas are rare cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues.

They can affect almost any part of the body, on the inside or the outside.

Sarcomas commonly affect the arms, legs and trunk. They also appear in the stomach and intestines as well as behind the abdomen (retroperitoneal sarcomas) and the female reproductive system (gynaecological sarcomas).

Bone sarcomas affect less than 500 people in the UK each year, making it a very rare form of cancer. 

But not all bone cancers will be sarcomas.

Soft tissue sarcomas can affect any part of the body; they develop in supporting or connective tissue such as the muscle, nerves, fatty tissue, and blood vessels. Soft tissue sarcomas include:

GIST is a common type of sarcoma; it develops in the gastrointestinal (GI) tract, a long tube running through the body from the oesophagus (gullet) to the anus (back passage) and includes the stomach and intestines.

Gynaecological sarcomas (sometimes shortened to gynae sarcomas) occur in the female reproductive system: the uterus (womb), ovaries, vagina, vulva and fallopian tubes. You may also hear the term uterine sarcoma. They can affect women of any age.

Retroperitoneal sarcomas occur in the retroperitoneum. This is an area behind the peritoneum, the lining of the abdominal space that covers the abdominal organs. The retroperitoneum is deep in the abdomen and pelvis, behind the abdominal lining, where organs such as the major blood vessels, kidneys, pancreas and bladder are located.

Sarcoma is very rare, and much more research needs to be done to fully understand how these cancers develop and how best too diagnose and treat them.

People can survive sarcoma if their cancer is diagnosed early, when treatments can be effective and before the sarcoma has spread to other parts of the body. It is vital that patients be referred to a specialist sarcoma team as early as possible.

FACTS AND FIGURES

There are three main types of sarcoma: soft tissue sarcoma, bone sarcoma and gastrointestinal stromal tumours (GIST).

There are around 100 different sub-types of sarcoma

10 people every day are diagnosed with sarcoma in the UK

About 3,800 new cases of sarcoma are diagnosed each year in the UK which makes up approximately 1% of all cancer diagnoses

Every year 3,330 people are diagnosed with a soft tissue sarcoma (including GIST)

500 people are diagnosed with a bone sarcoma every year

In general, patients with a bone or soft tissue diagnosis tend to be younger than the majority of cancer patients. 16% of bone or soft tissue sarcomas are diagnosed in patients less than thirty years of age, compared to around 2% of all cancers. 37% of bone or soft tissue sarcoma patients are aged less than 50 years.

Sarcomas make up 15% of all childhood cancers (0-14 years) and 11% of all cancer diagnoses in teenagers and young people (15-24 years)

Here in Scotland, 350 new cases of sarcoma are diagnosed each year (200 soft tissue, 100 bone sarcoma and 50 GIST)

Information from:

https://www.awarenessdays.com/awareness-days-calendar/sarcoma-awareness-month-2021/

SARCOMA AWARENESS MONTH – JULY 2021

Sarcoma Awareness Month runs for the whole of July. The charity Sarcoma UK – https://sarcoma.org.uk is asking for your help. 

About 15 people are diagnosed with sarcoma every day in the UK. That’s about 5,300 people a year. Yet 3 out of 4 people don’t know what sarcoma is. Even among people who have heard of sarcoma, almost a third don’t know what the symptoms are.

One thing that Sarcoma UK is looking to do is create more awareness of this issue. Over the next few days, I will be writing to my Member of Parliament (MP) and my Member of the Scottish Parliament (MSP) and list MSPs to help with this.

If you want to help Sarcoma UK, then click the link at https://sarcoma.org.uk

Published by One of Fifteen

I am 1 of only 15 people worldwide diagnosed with maligant myopericytoma. Life threatening surgery in October 2015 at the Royal Infirmary Edinburgh saved my life. I am now trying to find the #14others diagnosed with this rare form of cancer. Please help me. https://about.me/kevin.oneil

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