Melanoma is considered the deadliest form of skin cancer. It is the third most common cancer in men and women in Australia, and the commonest cause of death from cancer in younger people. Because melanoma is able to spread more proficiently than other skin cancers, it’s particularly dangerous, but it can be cured by surgery if detected early.

But against all odds, Linda’s cancer is being kept at bay and her quality of life has improved, thanks to the work of her cancer specialists and by researchers at the Westmead Institute for Medical Research. 

For the past 12 years, Linda has been participating in research conducted at the Institute, including the Australia Melanoma Family Study (AMFS) and the Genetic Epidemiology of Melanoma (GenoMEL) study. 

She also attends a clinic for people at high risk of melanoma at Westmead Hospital, and participates in clinical trials conducted by the Westmead Institute researchers.

The Institute is world-renowned for its melanoma studies. Researchers from its Centre for Cancer Research helped discover the first mutated gene that causes a high risk of melanoma in families, which Linda was found to carry. They have subsequently found most of the more than 20 gene variations that influence melanoma risk in the community, together with sun exposure.

“I’ve had melanoma for 12 years now and I’m still here – that’s exceptional,” says Linda.

"Having it confirmed that I had something that was hereditary – that my melanomas weren’t caused by sun exposure – means that I can stop blaming myself,” she said. “It also makes me vigilant with my children.

“That my family is taking part in the genetic testing and screening through the high risk clinic gives me peace of mind. And peace of mind, with melanoma, counts for so much.”

The AMFS and GenoMEL studies aim to fully understand how genetic factors and the environment combine to affect the risk of melanoma.  Over thirty years they have developed the world’s largest database on this problem. 

Recently, their work to show that sunbeds are an important cause of melanoma in young people led to bans on commercial solariums around Australia. Research from these studies directly informs innovative screening approaches being tested at several high- risk melanoma clinics, including at Westmead. This major trial of computer-assisted photographic monitoring has been a ten-year effort, funded by Cancer Institute NSW.  

This approach was shown to be effective in detecting melanoma efficiently, in a major report last year. The team has recently shown that their novel approach is also much cheaper for the health system than the uncoordinated care that people at high risk of melanoma currently experience. 

Professor Graham Mann, the co-director for the Centre for Cancer Research and leader at the Institute of these studies, says “The high risk clinic has been a great example of translational research, where we use our research knowledge to devise better and cheaper care for people.”

The last bastion is curing metastatic melanoma. Professor Mann believes the emergence of new therapies in the last five years has been the most exciting development in his career in research. 

“The latest clinical trials have changed the way we treat melanoma," Professor Mann said. "There are now new drugs that target mutations and others that awaken the immune response against melanoma. It is some of the most important work going on in cancer in the world. 

“The average survival time for people with active metastatic disease used to be about nine to ten months.  Now we have pushed the average out to two or three years, and some people appear to have been cured.” 

Project and Business Manager for Cancer Genetic Epidemiology at the Centre for Cancer Research, Helen Schmid says Linda’s participation in the research and her willingness to help raise awareness of melanoma had far reaching benefits. 

“The melanoma team is inspired by participants like Linda and their generosity in supporting our research,” Ms Schmid said.