Bowel cancer sufferers feel stigmatised by disease

Bowel cancer sufferers are urging the government to boost support services, as a new survey reveals more than a third with late-stage cancer believe they have the ''wrong cancer''. 

The findings of the ''My Cancer, My Voice'' survey, to be released on Monday, reveal only 24 per cent believe the government provides enough support and information for Australians living with bowel cancer, especially in comparison to other cancers. 

Almost 300 men and women who had either been diagnosed with bowel cancer previously or had early- or late-stage bowel cancer took part in the online survey between April last year and March. 

Most participants felt the general public did not understand bowel cancer, while about 37 per cent of those with late-stage cancer felt they had the ''wrong cancer'' due to a lack of support. About 77 per cent said there needed to be more therapies to treat advanced bowel cancer, while about 40 per cent said treatment options were limited compared with those available for other cancers. 

The findings have been released ahead of Bowel Cancer Awareness Month in June, with Bowel Cancer Australia using the survey to bolster calls for increased support services.

Bowel Cancer Australia chief executive Julien Wiggins said survival rates for bowel cancer still lagged those for other cancers, with only 66 per cent likely to be alive at the five-year mark. 


He said more than 80 per cent of the survey respondents believed the public did not understand bowel cancer, even though it is Australia's second-biggest cancer killer.

''In terms of support, we are calling for the inequities in bowel cancer funding to be addressed, particularly in the support areas,'' Mr Wiggins said. ''We do note that when it comes to bowel cancer treatment, we've had one of the longest waits for treatment funding, with one life-extending medication actually taking six years to be approved on the Pharmaceutical Benefits Scheme.

''Bowel cancer is the second-biggest cancer killer; it is the second most common cancer in this country. We would call for support services to better reflect the burden of the disease.''

Bowel cancer survivor Chris Hume, 49, agrees there needs to be more support services for bowel cancer. 

The father of two from Banks was diagnosed with late-stage bowel cancer in February 2007. He spent eight months undergoing treatment, including chemotherapy and radiation treatment. 

''With the late-stage cancer I had, I was in the 5 per cent bracket to survive ... 95 per cent of the people with my late-stage cancer die, so it's always in the back of your mind that there's a good chance you might die,'' he said. 

''You've got a higher rate of acquiring another type of cancer so you live with the thought that it could come back in another form in the future. The positive is that with it being so late stage, the fact that I've got to seven years is great.'' 

Mr Hume bravely opened up about the mental and physical toll cancer can have on a person. 

''I think one of the things that is overlooked is the effect on your mental well-being,'' he said. ''The long-term effects aren't just on the person with cancer, they're on your immediate family, and the rest of your family as well.'' 

Mr Hume believes there aren't enough resources to provide the broader support needed by people with bowel cancer, in particular with regards to mental well-being. ''There doesn't seem to be that connection with the mental side of it.''

He said bowel cancer did not receive as much publicity as some other cancers. ''I think there's a lack of wanting to talk about it," he said. 

Mr Wiggins said there would be an estimated 130,000 new bowel cancer cases within the next six years, underpinning the need for greater awareness, more support, and access to life-extending treatments. 

''We can get it early and the tests you can do at home are very good at detecting stage one cancers, which is about nine out of 10, so we've got the tests on our side,'' he said. 

''We know that if it is detected early, 90 per cent of bowel cancer cases can be treated successfully.'' 

David Rangiah, a colorectal surgeon from Calvary Clinic, said there was a real need to destigmatise bowel cancer.  

''Support services are absolutely crucial," he said. 

''An important aspect of it is trying to destigmatise bowel cancer, and one of the conclusions from the survey was that a lot of patients felt their cancer was not palatable by the general community, or they felt embarrassed about revealing it to other people,'' he said.

This compared with the breast cancer network, which he said had done a ''fantastic job'' of destigmatising that strain. ''We've seen it with the media support, the community support, and moving beyond the embarrassment and where people hide the disease.

''By revealing it ... it actually affects the community around you. When someone knows someone with a disease, they're more likely to approach a doctor for help, and I think there needs to be that destigmatisation.''

The federal government announced in the budget it would provide an additional $95.9 million over four years to accelerate the full implementation of the National Bowel Cancer Screening Program. This will enable all Australians between the ages of 50 and 74 to access biennial screening by 2019-20.