AYA World Cancer Congress Review by Ian Olver

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Report on 3rd Annual Global Adolescent and Young Adult Cancer Congress, December 4-6th Sydney, Australia

Ian Olver, Chair Scientific Committee, 3rd Global Adolescent and Young Adult Cancer Congress

Adolescents and Young Adults (AYA) with cancer which are characterised in Australia as those between 15 and 25 years are a group which in the past have fallen between the cracks of paediatric and adult care. However, a recent international conference in Sydney showed promising progress in better recognising and catering for the needs of this group and their carers.

Right from the opening ceremony, the 3rd Global Adolescent and Young Adult Cancer Congress from the 4th to the 6th of December demonstrated the impressive collaboration and sharing of resources between CanTeen, Teen Cancer America and the Teenage Cancer Trust to progress the care and support of AYA patients.

The theme of the meeting was, Navigating the Road through AYA Cancer and the 3 days were divided into “Life Before Cancer”, “Life With Cancer” and Life Beyond Cancer”. The presentations of experts and researchers were interspersed with the real-life experiences of AYA patients and carers which added a richness and impact to the themes. There was adequate time for discussion and the plenary discussions were expertly moderated by the host of The Health Report on ABC National, Norman Swan.

For me, the tone of the meeting was set in the first plenary by teenage cancer survivor and author Mette de Fine Licht from Denmark who simply revealed the importance of friends to young people facing cancer. Not so much the social media friends but those who can give you a hug when you most need it.

AYA’s as a group have been a vulnerable population in terms of resourcing, so it is impressive that they in turn are concerned with rarely heard voices within the AYA group. A series of presentations highlighted those subpopulations which included case studies of AYAs with complex social histories and no carer support, those who are incarcerated and the barriers to care experienced by LGBTI+ young people. The importance of a shared care model was exemplified by the case of an indigenous rural patient some of whose care had to managed by a large city hospital, a regional hospital and a rural hospital. This was successfully achieved.

Cultural disparities were discussed in a later plenary. Maori and Australian Aboriginal AYAs have lower survival rates, but personal stories showed the difficulties in negotiating the healthcare system. We must be able to deliver culturally appropriate care, a culture which in the case of the Australian Aborigines dates back over 60,000 years. Clinicians need to be upskilled in this area.

Given that preventing cancer is better than curing it, the risk factors associated with cancer are particularly relevant to AYAs. Lifestyle risks such as those associated with diet, exercise, sun exposure and tobacco use need to be embraced by AYA’s but that means imparting the information so that it will have a meaningful impact. In that respect are AYAs with cancer any different from those without? Communicating genetic testing results may require a degree of independent decision-making not routine in young adults. The importance of genetic counselling is paramount.

The advances in cancer treatment with the introduction of immunotherapies is particularly relevant to AYAs as only 1 of the last 17 new therapies approved for cancer common on AYA was not a targeted therapy or immunotherapy, and that was a more conventional cytotoxic. For example, AYAs have a high incidence of melanoma where these newer therapies have revolutionised the treatment and improved survival. Advances in the treatment of haematological malignancies were also highlighted where antibodies, check point inhibitors.  and CAR -T cell therapies are succeeding in previous refractory lymphomas and leukaemias. However, AYAs are known to have a much lower participation in clinical trials. David Freyer from the Children’s Hospital in Los Angeles reported how this is being studied with a view to developing a framework to increase trial enrolment of AYAs. However, an important component of improving outcomes does not rely on pharmacological and immunological advances but the incorporation of exercise into treatment regimens as summarised by Prue Cormie from the Australian Catholic University.

On the final day of the conference, the issues of supportive care and survivorship predominated. On the supportive care issues, one of particular importance to AYAs is fertility post treatment. It is essential, as championed by Antoinette Anazodo, that models of care incorporate oncofertility so that clinicians have reliable referral pathways for their AYA patients to receive the best advice.

Psychosocial support is also essential and in an overview of a third wave strategy, ACT (Acceptance Commitment Therapy) was provided by Nick Hulbert Williams from the University of Chester. Psychosocial support is not only needed by patients but by their carers and family members. On the issue of social support, a sobering figure is that the lifetime costs for each AYA patient from 2016 was estimated by Delloite Access Economics at $1.3 million per patient. The financial toxicity to the individuals can be both an objective burden and cause significant distress. This is often compounded by difficulty finding or keeping a job because of cancer and its treatment.

Finally, the sensitive topic of end of life care for AYAs was the focus of a session and age-appropriate end of life communication has been established as an international standard of care.

The most impressive aspect of the conference was the contribution of AYAs, not only sharing their experiences but being empowered to drive the AYA agenda forward. This applied not only to well-known AYAs like Chris Bond the 2 times Paralympic wheelchair rugby gold medallist who gave an inspiring dinner speech, but everyday young people who faced and conquered the challenges of a cancer diagnosis and now are strongly motivated to make things better for the next generation.

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About Author

Ian Olver

Professor Ian Olver, AM is the Professor of Translational Cancer Research and Director of the Sansom Institute for Health Research at the University of South Australia. He chairs the Australia Health Ethics Committee of NHMRC and is President of the Multinational Association of Supportive Care in Cancer. A renowned oncologist, cancer researcher and bioethicist, Ian has held senior positions in Australia and abroad. With research interests in anticancer drug studies, symptom control, bio-ethics and psycho-oncology, Ian is the author of more than 22 journal articles, 19 book chapters, has written 4 books and edited 4 others. He is a regular commentator on cancer issues in Australia and internationally.

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