LANCE Chalmers does not know where his cancer started, or when it will get out of control.
The Deloraine man has neuroendocrine tumours, a group of slow-grouping cancers so rare that his life is full of uncertainty.
Mr Chalmers said it took him months to receive a diagnosis in 2008, with doctors first suspecting gallstones.
``Even after they found out what I had, they went looking for the primary, because I've got what they call an unknown primary,'' he said.
``They think it's in the bowel, but they never ever found it.
``They were more concerned about the tumours in the liver, because they're quite big.''
Mr Chalmers said the cancer was not curable, with doctors instead focused on controlling it.
He said he was on a ``new beaut'' injectable treatment called lutate, which had shrunk his tumours substantially.
``But I even know people, through The Unicorn Foundation, who have had this lutate thing and they've still died,'' Mr Chalmers said.
``So it does eventually bump you off.''
Mr Chalmers said he had been involved in The Unicorn Foundation, an organisation supporting people with neuroendocrine tumours, since they started a Launceston support group earlier this year.
He said he was sharing his story to support the foundation's push for federal government funding for their neuroendocrine tumour nurse.
Mr Chalmers said the nurse was a recent addition, providing general phone and internet advice for patients and doctors.
Mr Chalmers said he was helping the organisation collect 20,000 signatures for a funding petition to be presented to the federal government in October.
For more information on The Unicorn Foundation and neuroendocrine tumours, visit http://www.unicornfoundation.org.au/.