Family shows support for forgotten cancers: The Margaret ‘Mavis’ O’Dea Research Award 2015
Many of us have never heard of NET cancer, but for the O’Dea family it is all too familiar. Neuroendocrine tumors (NETs) is the umbrella term for a group of unusual cancers which develop from cells in the diffuse endocrine system, which regulates the workings of different organs of the body. Neuroendocrine cells are found in the respiratory and digestive tracts. NETs can affect people of any age. The development of NETs is not fully understood and the causes of this uncommon cancer is unknown.
Margaret Celene O’Dea, affectionately loved as ‘Mavis’ to her family and friends, was diagnosed with NET cancer in March 2013 at the age of 81. She died 11 months later after intensive treatment, including numerous cycles of chemotherapy, radiation and blood transfusions, as well as a constant battery of PET and CT scans. Throughout her life Margaret underwent multiple operations on her bowel, ovaries, stomach, appendix and duodenum, causing her to also suffer abdominal adhesions. Margaret suffered bowel issues including diverticulitis in the last ten years of her life, involving further surgery.
Bowel NET cancer, the source of her primary tumour, was the cause of her death. Kerrie O’Dea, through her business Organisation Unlimited, wanted to raise awareness of this very rare cancer, by becoming involved in Cancer Council Victoria’s Forgotten Cancers Project. “I wanted to pay tribute to Mum who, sadly, may have carried this rare cancer for many years before her actual diagnosis of a malignant, high grade NET tumour too late for surgery,” Margaret’s daughter, Kerrie O’Dea said. “Mum coped with the devastating news of a poor prognosis and the invasive medical interventions but never gave up hope. Her nursing background helped Mum to understand procedures and medical terminology and endure the discomfort of frequent hospital stays. She kept a detailed daily diary meticulously for others undergoing a similar experience in the future to refer to should it be helpful to them” said Kerrie.
Many cancers now have a survival rate of 50 per cent or more but for many cancers survival has not increased in decades. This is why CCV has invested in the Forgotten Cancers Project to look into the causes of less common cancers with the hope of improving prevention and treatment. The project is looking to recruit Australians who, as an adult, have been diagnosed with a less common cancer. Participants are asked to complete questionnaires about their family history of cancer, lifestyle and environment, and to provide a saliva sample.
Ten days before her death Margaret had a session at the Peter McCallum Cancer Centre with Professor Rod Hicks who explained his work in biological and genomic predictors and radionuclide therapy for NETs which she found fascinating. Unfortunately, however, he then showed scans that confirmed that Margaret’s NET Cancer had spread to her brain and that she would not benefit from the treatment outlined. Watching Margaret’s health decline so rapidly, despite her intensive treatment regime, took a toll on her husband of 60 years, Kevin, and her 6 children and 12 grandchildren.
The O’Dea family would like to see more education of the medical community and primary health care professionals about NETs, to assist in early diagnosis and the development of wider range of treatment options. “We’d like to see more research into the work on biological and genomic predictors in response to molecular therapy for NETs and a possible cure for NET cancers in the future,” said Kerrie. To find out more about the project, visit www.forgottencancers.com.au.