Debra Nelson lives with an ultra-rare cancer you’ve probably never heard of.
The Kurunjang woman has stage four metastatic leiomyosarcoma – a rare and aggressive form of cancer that attacks the body’s connective tissue.
Doctors misdiagnosed Ms Nelson early on with conditions including irritable bowel, fructose intolerance and arthritis because she had severe abdominal pains.
A correct diagnosis came in 2013 and the prognosis was not good.
Her treatment has consisted of intensive radiation therapy and chemotherapy and, with few options available, her last hope could be a trial drug that costs tens of thousands of dollars a month.
An online fundraising campaign was recently set up to help raise $100,000 towards treatment.
Surgery in 2014 removed most of a tumour but not all of it.
The cancer has since returned and has now invaded her liver.
Ms Nelson knows she’s facing an uphill battle.
“When they discovered it, it was at stage four and was at maximum aggressiveness and had spread to my lymph nodes,” she said.
“The average life expectancy for people with this kind of cancer is about five years and I’ve had it for four.
“I’m doing my research and reading up on everything.
“I don’t find much joy in anything these days because I am too busy trying to save my own life.”
To donate, go to: treat.rarecancers.org.au/campaign/2061/helping-deb-nelson
