It's been called the 'loneliest cancer' and now a charity are trying to raise awareness of the rare disease, sarcoma.
A report published by Sarcoma UK, shows how little is known about the cancer and how it is commonly misdiagnosed. A YouGov poll commissioned by the charity showed 75% of people "do not know what sarcoma is".
Hayley Pattimore, 25, from Tonypandy was diagnosed with Ewing's sarcoma in 2015. Ewing's sarcoma is a bone cancer and is the most common form of Sarcoma in young people.
"In 2015 I was having pain in my right leg and it was a pain I'd never felt before. I'd been going back and forth to the doctors, making appointments, trying to find out what was wrong and due to a lack of knowledge at the time, my GP would send me away with sciatica or growing pains or I'd fallen."
"Eventually I had an x-ray in a local hospital and a registrar found a smudge on my bone from the x-ray so they sent me for an MRI scan, and that's when I found out I had sarcoma."
Hayley, who's currently a patient at Velindre hospital in Cardiff, admits she'd never heard of sarcoma before her diagnosis and didn't know what to think when she was told the news.
"There aren't many of us, I've met a few others with sarcoma my age, and sadly some of them are no longer here which makes it even harder then because I haven't got those to talk to. It's difficult sometimes to not be able to talk to people who know what I'm going through."
What is Sarcoma?
Sarcomas are tumours that develop in the cells of either the body's soft tissue or bones and they can appear in almost any part of the body. More than 5,300 people are diagnosed with the disease in the UK every year and there are over 100 sub-types of sarcoma which means there is no one size fits all treatment.
The report by Sarcoma UK found that a lack of awareness of sarcoma among the general public and healthcare professionals can lead to late or misdiagnosis.
Sarcoma presents unique challenges for healthcare professionals not faced when dealing with other cancers, and the consequences of this can make patients feel helpless and alone. It's so uncommon that a GP might only ever see one in their whole career.
Jo Gronow, a Sarcoma Nurse Specialist at Velindre, says the disease is a very rare form of cancer but can often be lonely too.
"On average 15 patients every day in the UK are diagnosed with a sarcoma so in comparison to your big cancers it's very little and not very well known. That's unfortunate, that means patients tend to have a problem with diagnosis and also have a problem with support and getting to know other patients."