John Stubbs doesn’t recall ever being asked about pain when he was diagnosed with leukaemia 23 years ago.
He was focused on his cancer diagnosis and treatment, and wasn’t thinking about the possible long-term effects and pain.
“Even with a cure, the trauma can hit years later,” Stubbs said.
As more Australians survive cancer, greater attention is needed on the intense pain that people continue to live with and which interferes with their daily lives, according to research co-authored by Stubbs.
Stubbs, the former chief executive of patient advocacy group Cancer Voices, said he was motivated to contribute to the research because of his own experience of ongoing pain and after hearing stories about pain from other cancer patients.
The study, led by the Australian National University, is the first of its kind and compared the experiences of pain for 16,000 cancer survivors across 13 different types of cancer with the pain experienced by more than 100,000 people without cancer.
“Pain is one of the really feared symptoms of cancer patients, but not much is known about the extent to which cancer survivors experience pain,” said Associate Professor Grace Joshy, the study’s lead author.
Data was obtained from the 45 and Up Study, which is the largest ongoing study of healthy ageing and follows a quarter of a million Australians, regularly asking them about their health.
The study found survivors of blood cancers, such as multiple myeloma and leukaemia as well as lung cancer, which is often diagnosed at an advanced stage, experienced greater levels of pain than people without cancer.
Overall pain levels for survivors of common cancers, such as breast, prostate and colorectum cancers, were only slightly elevated compared with people without cancer, Joshy said.
The study also found pain was common across both groups, with 35% of cancer survivors and 31% of participants without cancer reporting moderate to severe pain in the four weeks prior to being surveyed, while 16% of cancer survivors experienced pain sufficient to affect their day-to-day activities compared with 13% in people without cancer.
Pain was also greater in those with a more recent cancer diagnosis, advanced disease and those reporting recent cancer treatment, compared with other survivors and participants without cancer.
Joshy noted that the point of the study was to examine long-term cancer survivorship rather than what people experienced during treatment.
The study is part of a broader ANU project looking at outcomes and experiences for cancer survivors. Prof Emily Banks, the lead investigator of that project, said large-scale data had not previously been used to look at cancer survivorship.
“Since the majority of people with cancer survive long term, we can say, ‘terrific, we’ve done so much for diagnosis, treatment and prevention’,” she said.
“We now need to really turn our attention to living well having had a diagnosis of cancer.”
Banks said, when it comes to cancer, there are multiple sources of pain: from the cancer itself, from complications of the cancer such as a mastectomy or the cancer spreading and from the treatments.
Giulia Jones, the chief executive of advocacy group Painaustralia, said “we need to do better for pain care for cancer patients”.
“People with pain need to have it taken more seriously, separately to the other diseases they have.”
Prof Tanya Buchanan, the chief executive of Cancer Council Australia, said the study achieved a “world first” in providing broad evidence on pain to guide survivors, policymakers and health professionals.
“These results highlight stages in the cancer journey and cancer types where pain is most common, as well as providing cause for optimism for most people living with cancer.”
