We Must See The Totality

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  • We Must See The Totality

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    Brain cancer 'forgotten' by funding and research bodies as survival rates stagnate, inquiry to be told

    By Mazoe Ford
    Updated about 4 hours ago
    PHOTO: Tom Gray's parents made sure his final weeks were happy ones before he died in 2016. (Supplied: Carly Gray. )
    MAP: Sydney 2000
    "Go out and enjoy your son."
    That was what doctors told Carly and Simon Gray when their eight year old son, Tom, was diagnosed with brain cancer in 2016.
    "He was complaining of some double vision and headaches and he was never one to complain," Ms Gray told the ABC.
    An optometrist referred the Grays to the Children's Hospital in Melbourne and tests revealed their bright, bubbly boy had a brain tumour known as a Diffuse Intrinsic Pontine Glioma (DIPG).
    "We went into the hospital and were confronted with a room full of experts only to be told [DIPG] had a zero survival rate, it was inoperable and basically 'go out and enjoy your son'," Carly said.
    PHOTO: Carly and Simon Gray with Carly's mother Jenny in 2006, a few weeks before Jenny died. (Supplied: Carly Gray)

    "Just to be told that 'he's going to die, no matter where you go in the world no one is going to be able to help you, you can waste your time trying to find a cure but it's not going to be there, just go and have a holiday and enjoy your son', it just tears your heart out," Mr Gray added.
    Despite hoping the doctors would be wrong, the Grays already knew brain cancer could be a death sentence - Carly's mother Jenny died from the disease 10 years earlier.
    They took doctors' advice on board and made sure their young son's final weeks were happy ones, with family holidays, play dates with friends and lots of time in the water because Tom "absolutely loved" the water.
    He died 14 weeks later.
    Senate committee to investigate low survival cancers

    Statistics from the Cure Brain Cancer Foundation (CBCF) state that each year more than 1,600 Australians will be diagnosed with brain cancer and about 1,200 will die from it. Only two in 10 people survive more than five years.
    Brain cancer statistics:

    • More than 1,600 Australians are diagnosed with brain cancer each year and 1,200 die from it
    • Brain cancer kills more children than any other disease
    • Brain cancer kills more people under 40 than any other cancer
    • Only two out of 10 people survive five years
    • Brain cancer receives less than 5 per cent of government funding for cancer


    This week a senate committee will begin hearings into funding for cancers with low survival rates, including brain cancer, pancreatic cancer, lung cancer and ovarian cancer.
    Barrie Littlefield from the CBCF told the ABC brain cancer kills more children in Australia than any other disease.
    "More than a classroom, like a busload of kids, will basically die every year, and it also kills more people under 40 than any other cancer," Mr Littlefield said.
    "We haven't seen a meaningful increase in survival in brain cancer for more than 30 years and that's just completely unacceptable."
    Five-year survival rates for other cancers have grown to be much higher.
    According to the Cancer Council of Australia, breast cancer's five year survival rate is now 90 per cent and prostate cancer's is 95 per cent.
    The Cure Brain Cancer Foundation's senate committee submission states that brain cancer receives less than 5 per cent of cancer funding from the National Health and Medical Research Council (NHMRC).
    "This is in contrast, for instance, with breast cancer, which in 2014, received approximately 40 per cent of NHMRC cancer research funding," the CBCF submission said.
    "Through the prioritisation and the funding that has been given to [other cancers] by government they've had a fantastic increase in survival and that's what we want to emulate with brain cancer," Mr Littlefield said.
    Brain cancer 'forgotten'

    It adds that the foundation believes brain cancer has been "forgotten" by some sectors.
    "The pharmaceutical industry has less interest in brain cancer as the market potential is small in relation to higher incidence diseases and cancers," the submission said.
    PHOTO: Tom Greenaway has survived for five years after having a brain tumour removed. (Supplied: Tom Greenaway)

    Sydney couple Tom and Caroline Greenaway also wrote submissions for the senate committee ahead of its inquiry.
    This June will mark five years since Tom was diagnosed with brain cancer, while his wife Caroline lost her father to the disease 12 years ago.
    "Tom's neurologist said it was a GBM (glioblastoma multiforme), the same brain tumour that my father was diagnosed with in 2005 and he died seven months after diagnosis," Ms Greenaway said.
    "When he said GBM I guess I stopped breathing ... he didn't even look at Tom he just looked at me and said 'I'm sorry'."
    Mr Greenaway had the tumour removed from the right frontal lobe of his brain in 2012 and then endured a year of chemotherapy and radiation treatment.
    "I consider myself fortunate, not to get cancer in the first place, but fortunate to be here five years later, and perhaps doubly fortunate that I have not had any recurrence in that time," Tom told ABC News.
    "But at the same time I'm sort of chastened by the fact that only one in 10 people [with a GBM] get this far - a lot of other people get this disease and lose their lives.
    "And even though I live each day like I don't have it, at the back of my mind I know it's there and I know recurrence is common and at any future scan I could be told it's back."
    PHOTO: Caroline Greenaway as a teenager with her father Geoffrey Keam, who died 12 years ago from brain cancer. (Supplied: Caroline Greenaway)

    The Greenaways and the Grays hope their submissions will help the senate inquiry implore governments and the private sector to allocate more funding for cancers with low survival rates.
    "I'd like to think that in the future if my tumour does come back doctors can tell me that new research has been done or novel treatments have been found and this is not necessarily an end game," Mr Greenaway said.
    "People are dying, there is no change in the survival statistics and that's not good enough," Ms Greenaway said.
    The two families are among many who have supported the Cure Brain Cancer Foundation's call for cancers with low survival rates to receive a greater share of the funding pie.
    "Until there is enough money in research they won't be able to find a cure," Ms Gray said.
    "It's really about not wanting other parents to go through what we went through, and not wanting other children to go through what Tom went through."
    The senate committee has received 264 written submissions.
    Topics: cancer, diseases-and-disorders, medical-research, government-and-politics, sydney-2000
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