Melanoma under 40
By Carole Renouf
17 November 2016
I spent a morning in clinic with one of MIA’s surgeons about a month ago. As each of her patients arrived, she inquired whether they would mind the CEO sitting in on their appointment because the CEO wanted to learn more about the experience of patients. Every single patient consented to having me present. They ranged from old to young, male to female, early to advanced melanoma and it was very moving for me to spend some time with them as they received everything from the worst news to the best. All the people with melanoma I met that day have stayed with me, but none more so than the young ones (under 40). It was the statistic that melanoma is the most common cancer in 15-39 year old Australians that really persuaded me to take this job.
A few years ago, when I was in a previous role, one of my proudest initiatives was the work we did reaching out to young women, those who got breast cancer in their 20s and 30s.
The impact of cancer on young lives is ferocious and wide-ranging. This is not to diminish in any way its significant impact on older lives, but when you are under 40 the experience of cancer tends to take more away across more aspects of your life and over a longer time. Also, as cancer services tend to be geared towards older people, you are likely to find less help and support suited to your needs and life stage.
The qualitative research that was done into breast cancer in young women revealed that the disease, diagnosis and treatment impacted issues as critical as future employment and career, finances, fertility, relationships and sexuality and self-image. If you would like to see footage from the press conference with affected young women, click here.
To my knowledge, no such research has yet been done in melanoma in Australia. Melanoma is the most common cause of cancer death in 20-39 year olds. In contrast to breast cancer, melanoma strikes both men and women (slightly more men) and therefore must assuredly involve additional issues to breast cancer. Yet, there is no body of evidence as to what these are, nor how to address them.
As we head towards 2017, I have set myself the goal of gathering the evidence from young Australians affected by melanoma of its impact on their lives and of any unmet needs they may have. This may mean a shift in the way we and others provide services.
For example, over 90% of melanoma – if caught early – is curable through surgery, so surgery remains a dominant treatment modality. A famous surgeon once said, “If you can’t cut it out, it’s not real” - yet studies show that psychosocial distress is very real in at least 30% of melanoma patients and I suspect even more real in the young. So is there an unmet need for more psychosocial support for under 40s affected by melanoma, for example?
If you’d like to share your experience and help me gather the evidence about the impact of melanoma on young Australians, please contact us at firstname.lastname@example.org for a personal interview. Your contribution would be greatly appreciated.
Sydney Health Partners' goal is to ensure world class research is successfully implemented & scaled-up to benefit patients & wider society.
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