This section discusses some of the ways having an innate variation of sex characteristics (an intersex variation) might affect cancer treatment. About 2% of people are born with one of at least 40 known variations of sex characteristics.
Common variations include complete androgen insensitivity syndrome (46,XY), Swyer syndrome (complete gonadal dysgenesis, 46,XY) and Klinefelter syndrome (47,XXY).
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Cancer care as an intersex person
Your cancer care team should offer you care and information that meets your needs, respects who you are, and supports you to make informed decisions about treatment. They should treat you as an individual and work with you in a way that respects your privacy and dignity.
As an intersex person, you may have some added challenges
For example:
- it may be harder to find cancer specialists who understand health issues related to the intersex variation you have
- clinical practice guidelines that set out recommended cancer treatment pathways may not cover your situation, which can make it harder for you to make informed decisions
- you may avoid cancer screening because treatment you had as a child to make your body fit social norms has affected you throughout your life
- surgery for cancer may be a reminder of surgery imposed on you as a child, which can be distressing and traumatising
- you may feel vulnerable if you’ve experienced harassment, violence, stigma, exclusion or discrimination (minority stress).
Partnering with your cancer care team
Working in partnership with your cancer specialists to make treatment decisions may help you deal with these challenges. Research shows that many health professionals report a lack of confidence and knowledge in treating intersex people.
If you have a GP or other specialist looking after your ongoing medical care, they can provide your cancer specialists with any information that is relevant to your cancer care. This may include details about your intersex variation, the sex assigned to you at birth, your gender, your anatomy and any hormone therapy you take.
Some states and territories now have laws that protect children with variations of sex characteristics from restricted or special medical treatment involving non-essential medical procedures, setting out strict rules and independent oversight.
Communicating your medical history
If you don’t have a GP or other specialist you trust, think about what you want to say and how much you want to share with your cancer specialists. If possible, take someone with you to your appointments for support.
To get the correct cancer diagnosis and treatment, your doctor needs to understand your medical history, which may be confronting.
Learn more about dealing with discrimination.
An emphasis on intersex care is vital and long overdue in the health; we are so overlooked as a community.
ALEX (PANSEXUAL, NON-BINARY, INTERSEX, SKIN CANCER)
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Key resource
The information on this page is also available for download.
This resource was developed as part of the Western Sydney University Out with Cancer research project.
Prof Alison Brand, Clinical Professor, The University of Sydney and Director, Department of Gynaecological Oncology, Westmead Hospital, NSW; Dr Daniel Brown, Clinical Psychologist and Researcher, School of Psychology and Public Health, La Trobe University, VIC; Dr Rosalie Power, Senior Research Fellow and Deputy HDR Director, Translational Health Research Institute (THRI), Western Sydney University, NSW; Dr Sarah Bishop Browne, Palliative and Supportive Care Staff Specialist, Chris O’Brien Lifehouse, NSW; Collette Butler, Clinical Nurse Consultant and McGrath Breast Care Nurse, Cancer Support Centre, Launceston, TAS; Prof Ada Cheung, Endocrinologist, NHMRC and Dame Kate Campbell Research Fellow and Head, Trans Health Research Group, The University of Melbourne, VIC; Dr Tiffany Daly, Radiation Oncologist, Princess Alexandra Hospital, Raymond Terrace, QLD; A/Prof Ian Faragher, The University of Melbourne and Head, Colorectal and General Surgery Unit, Western Health, VIC; Hall & Wilcox (law firm); A/Prof Peter Heathcote, Urologist, Brisbane Urology Clinic, QLD; Prof Richard Hillman, Senior Staff Specialist, HIV and Immunology, St Vincent’s Health Network, Sydney, NSW; Mads Kennedy, Project Coordinator, Silver Rainbow, LGBTIQ+ Health Australia, NSW; Dr Sanjeev Kumar, Breast Cancer Medical Oncologist and Clinician Scientist, Chris O’Brien Lifehouse, NSW; Madeline Lee, 13 11 20 Consultant, Cancer Council NSW; Luke Mitchell, Urological and Sexual Health Nurse Practitioner, Men’s Health Melbourne, VIC; Nadia Reddish, Consumer; Dr Stephen Rowles, Sexual Health Physician and General Practitioner, The Centre Clinic and Melbourne Sexual Health Centre, VIC; Teresa Simpson, Senior Clinician, Psycho-Oncology Social Work Service, Cancer Therapy Centre, Liverpool Hospital, NSW; Mel Tume, Consumer; Prof Jane Ussher, Professor of Women’s Health Psychology and Chief Investigator, Out with Cancer Study, Western Sydney University, NSW; Syr Lumi Vor, Community Member; John Wenborn, Shine a Light (LGBTQIA+ Cancer Support Group). We also thank the health professionals, consumers and editorial teams who worked on the first the edition of this title. We particularly acknowledge ACON and Intersex Human Rights Australia for their extensive input on the first edition. Intersex-Inclusive Progress Pride Flag designed by Valentino Vecchietti (2021).
View the Cancer Council NSW editorial policy.
