Forgotten cancers kill 40 people a day
- From: News Corp Australia Network
- August 19, 2013
FOURTEEN forgotten cancers are responsible for one in three cancer deaths and concern is mounting that their survival rates have barely improved in over 20 years.
Forty people a day are dying from these rare cancers because there is little funding for research into new treatments or screening programs.
While the death rate from all cancer has plunged 30 per cent in the last 20 years new research from the Cancer Council NSW show there has been only a six per cent reduction in the death rate from the forgotten cancers.
Deaths from liver cancer have increased by 70 per cent largely due to undiagnosed hepatitis B in Asian Australians.
The underfunded cancers include pancreatic cancer which kills over 2,400 people a year and cancer of the unknown primary which kills nearly 2,300, almost as many as die from breast cancer.
"These cancers are rare and more difficult to study because there are fewer patients and you need to collaborate with groups from around the world to get decent statistics," says Cancer Council NSW research director Associate Professor Freddy Sitas.
Gill Batt who heads the council's support services says because the cancers are rare and there are few survivors they don't have a mass voice advocating for help like the more common bowel, breast and pancreatic cancers.
Many of these rare cancers appear from nowhere and progress so quickly patients don't even have time to complete a bucket list, she says.
"There is a lot of emotional distress, no-one else seems to have it, there is no-one to talk to about it and no support groups," she said.
Professor Sitas says it is also difficult for doctors treating patients because they have very limited research to rely on and few medicines on which to base their treatment.
Cancer Council NSW has set up the first support group for pancreatic cancer and has produced a DVD of people with the cancer talking about how they are feeling, similar programs are under way for other rare cancers.
Six year old Jack Norman became a rare cancer patient when doctors finally diagnosed a brain cancer called ependymoma that had affected his gross motor skills and caused him to collapse.
"In emergency they showed us a scan of a tumour that was the size of a small lemon wrapped around his brain stem, strangling his brain," says Jack's mother Tanya.
The tumour was removed but Jack suffered a stroke that weakened his left side and he needed a tracheotomy tube to help him breathe for months.
Today he is back at school, learning the piano and Spanish and planning to turn his love of the Titanic into a ship building career.
"It just shows there is hope and cancer doesn't always end in tragedy," says Tanya Norman.
The Cancer Council wants people to donate to Daffodil Day this Friday to help provide more funding for research into rare cancer.
Funds from the Cancer Council have already helped sponsor research that has found how pancreatic cells can force normal cells to help the cancer spread. Dar Tai Liu at the Children's Cancer Institute has discovered a new drug that may slow pancreatic cancer growth by 50 per cent.
THE FORGOTTEN CANCERS:
Cancer of unknown primary