A better understanding of pancreatic cancer symptoms and quicker diagnosis are crucial if low survival rates are to be improved, according to campaigners on World Pancreatic Cancer Day.
The disease is set to become the fourth biggest cause of cancer death in the UK within five years, behind lung, bowel and prostate cancers.
Those diagnosed have less than a 7% chance of surviving for five years.
Ceri Weston, who is 38, was diagnosed just one week after her second son Leo was born prematurely at the end of 2014.
"I thought I've just had a baby and if I was to die, he would have no memories of me. I was determined to last as long as possible."
After 13 rounds of chemotherapy, 35 sessions of radiotherapy and surgery, Ceri was told there was no trace left of the cancer.
But it came back – not once but twice, and now she has been told it is incurable.
"I can't really articulate exactly how I feel other than just devastated. I don't want to die."
The pancreas is a large gland about six inches long which produces enzymes to digest food and insulin to control blood sugar.
Ali Stunt set up the charity Pancreatic Cancer Action after surviving the illness.
It took about six visits to the doctor and hospital before it was diagnosed.
"We need to be making sure people are diagnosed sooner and to do that we need to increase the public knowledge and awareness of not only the disease but symptoms of the disease," she said.
But she also says medical professionals need the right "tools and resources" to spot the disease sooner.
The symptoms of pancreatic cancer include unexpected weight loss, jaundice – causing yellowing of the skin and whites of the eyes – and pain in the back or stomach area.
But in 44% of cases the patient is only diagnosed after seeking some form of emergency treatment and only one in 10 of those people will still be alive after a year.
The causes are not fully understood but include smoking, obesity and a history of certain conditions such as diabetes and stomach ulcers.
Survival rates have not improved much in decades and one of the problems, according to GP Dr Ellie Cannon, is a lack of funding for research.
"The rates for breast cancer and various other gut cancer and prostate cancer have vastly, vastly improved, whereas pancreatic cancer has still stayed very much behind and that's because there is no screening test, there's no quick diagnostic test," she said.
A Department of Health and Social Care spokesperson said that cancer is a priority and survival rates are at a record high.
But they added: "We know there is more to do. Last month, as part of the long-term plan for the NHS, we announced a new cancer strategy that will radically overhaul the system and ensure 75% of all cancers are detected at an early stage by 2028."
Ceri is fighting to raise awareness of the illness that she knows will ultimately beat her.
More from UK
"As much as my boys might have to lose their mummy, if they can look back at me and think my mummy did some amazing things – yes, she had to die for it but she saved X number of lives – at least they can look at me and be proud."
Her next goal is to see Leo start school in September.