The cancers that everyone forgot
28 Oct 2016
There are dozens of deadly cancers that kill thousands of Australians including children every year, but few people know about them.
There’s a lesser-known group of cancers called forgotten cancers killing thousands of Australians annually. Pancreatic, uterine and brain cancer are among these cancers. However, awareness is low among the public unless a loved one is touched by it.
Researchers often struggle to find information about these cancers because there’s a lack of funding available to study the causes of these cancers, there’s no simple method or test for early detection and survival rates are low.
Brain cancer
Marcella Zemanek clearly remembers the day, nine years ago, when her husband Stan told her he had a brain tumour.
“Stan had chemotherapy and radiation and still went to work over the next 12 months. Unfortunately, he started to deteriorate soon after and there was nothing else that could’ve been done for him. Stan died in my arms at home,” Zemanek says.
“Brain cancer survival rates have changed little over the past 30 years. There’s a survival rate of ve per cent for certain types of brain cancers
and awareness is extremely low,” Barrie Little eld, Head of Engagement at Cure Brain Cancer Foundation says. Brain cancer receives less than ve per cent of government funding and the causes are unknown. About 1200 people die from brain cancer annually in Australia. Common symptoms include; headaches, seizures, touch and motor skills loss, DVT, hearing and vision loss, fatigue, depression, behavioural and cognitive changes and hormone/gland changes.
“Cure Brain Cancer Foundation was founded by neurosurgeon Dr Charlie Teo because he felt more needed to be done for sufferers of brain cancer. Charlie also raises funds on behalf of the foundation, most recently the Million$Mission where he and 10 other people are climbing Mt Kilimanjaro.”
Many who tuned into the Logies last year will also remember TV presenter Carrie Bickmore’s passionate plea to do something about brain cancer. While it took Cure Brain Cancer Foundation by surprise, “[it] definitely gave a boost to our efforts.”
Uterine cancer
Uterine cancer is the fourth most common cancer in women after breast, bowel and lung cancer according to the Australian Gynaecological Cancer Foundation (AGCF).
It occurs mostly in older women who are post-menopausal and above a healthy weight. Women with uterine or endometrial cancer will typically experience abnormal vaginal bleeding early on. Currently, it’s estimated that 2600 new cases will be diagnosed in Australia in 2016 and about 440 females will die from uterine cancer this year.
Awareness of uterine cancer is low and it’s often not picked up and treated early enough to achieve a complete cure. “Based on our analysis and interpretation of published data, uterine cancer is not receiving a reasonable share of research grant funding,” Dr Alan Carless, Executive Officer of AGCF explains. “In 2014, gynaecological cancer received 3.4 per cent, while breast cancer received 29.9 per cent, of the National Health and Medical Research Council research grants.”
Helmut Uhlmann, whose mum died from metastasised endometrial cancer last year said, “She lived for two and half more years on a trial treatment after her diagnosis which slowed the growth, but couldn’t stop it or remove it. She deteriorated rapidly in her final months. It was hard to see her like that.”
Uhlmann founded Busk for a Cure in 2015 while his mum was still alive, with musicians busking on Sydney streets to raise money for Cancer Council NSW and Crohn’s and Colitis Australia. Recently, an Instagram campaign by The Australia New Zealand Gynaecological Oncology Group (ANZGOG) called Save The Box was spearheaded by celebrities like Ita Buttrose and Johanna Griggs to raise awareness for gynaecological cancers.
Pancreatic cancer
The statistics for pancreatic cancer are pretty dire. According to Andrew Giles, CEO of Garvan Research Foundation, “survival rates for pancreatic cancer sufferers haven’t changed in 20 years, the five-year rate remaining at five per cent for men and six per cent for women.”
In 2016, more than 3000 cases of pancreatic cancer will be diagnosed in Australia. More than 2800 of these people will not survive. Many people are diagnosed late because no signs or symptoms are present in the early stages. Symptoms include; a loss of appetite, yellow skin and eyes (jaundice), nausea and vomiting, changes to bowel habits, difficulty swallowing, and a recent diagnosis of diabetes.
Daniel Goulburn lost his wife of 34 years, Rochelle, to pancreatic cancer in 2014. She was just 57 years old. “It was very difficult watching Rochelle go through the treatment, knowing there was no hope for a cure,” he says.
“There is no such thing as a good cancer, but finding a cure for pancreatic cancer doesn’t get sufficient research funds and given its very low survival rate, doesn’t get sufficient attention. It is simply a forgotten cancer.
“There was very little awareness of pancreatic cancer and it was something our family wanted to change. We founded #PurpleOurWorld, a social media movement dedicated to raising awareness of pancreatic cancer,” Goulburn added.
In 2015, Garvan Research Foundation, Avner Pancreatic Cancer Foundation, GI Cancer Institute, Pancare Foundation and #PurpleOurWorld collaborated to form the Australian Pancreatic Cancer Alliance aiming to increase awareness levels. The Australian Government is represented by Cancer Australia and journalist Tracey Spicer is the patron. “What’s really powerful about this group is it’s made up of researchers, charities and advocacy organisations,” Giles states. “We are presenting a more united message in raising awareness about the cancer, directing people according to their needs, for example, support groups, and avoiding duplication.”
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