Out with Cancer by Ussher, Jane M.; Perz, Janette; Power, Rosalie;

Short description:

This book explores the cancer experiences of LGBTIQ+ people and addresses the invisibility of sexual and gender minorities in cancer research and care, highlighting the urgent need for inclusive, culturally safe practice that recognises diverse identities, bodies, and relationships.

Long description:

This book explores the cancer experiences of LGBTIQ+ people, drawing on two of the largest mixed-methods studies conducted in this area. It addresses the invisibility of sexual and gender minorities in cancer research and care,
highlighting the urgent need for inclusive, culturally safe practice that recognises diverse identities, bodies, and relationships.

Based on data from over 900 LGBTIQ+ patients and carers, the book reveals higher rates of distress, discrimination, and barriers to care compared to the general cancer population. It examines the impact of cancer on psychological
wellbeing, LGBTIQ+ identities, sexuality, and survivorship, for gay, lesbian, bisexual, queer, trans, and intersex participants, across cancer types and age groups. Using an intersectional lens, the book identifies how overlapping
forms of marginalisation shape cancer experiences and outcomes. At the same time, it identifies protective factors such as chosen family, affirming care, and LGBTIQ+ community support. It provides actionable recommendations for improving oncology education, policy, and practice, making the case for systemic reform to address health inequities in LGBTIQ+ cancer care. This book is intended for healthcare professionals, researchers, educators, policy makers, and community advocates seeking to improve cancer care for LGBTIQ+ people. It will also be of interest to those working in health equity, public health, and social justice.

 'Out with Cancer: LGBTIQ+ Cancer Survivorship and Care is an essential, eye-opening resource for students, researchers, and clinicians alike. With a thoughtful focus on the intersection of identity, health, and healing, this timely volume explores vital mind-body issues that shape the cancer experience for LGBTIQ+ individuals. A powerful contribution to inclusive care, it offers both evidence and empathy to help improve quality of life for a community too often overlooked in cancer care.'

Gwendolyn P. Quinn, Ph.D., Livia S. Wan MD Endowed Professor, New York University Grossman School of Medicine, New York, USA

'This is a foundational publication on LGBTIQ+ cancer care considerations that arrives as LGBTIQ+ protections have regressed in the U.S. and censorship is peaking. As a colleague, I am incredibly grateful to the authors and contributors of this landmark study at a time when it is critically needed.'

Mandi L. Pratt-Chapman, PhD, Professor of Medicine, The George Washington University School of Medicine and Health Sciences, Washington, DC, USA

'The Out with Cancer Study is one of the most comprehensive mixed methods studies to explore LGBTQI+ experiences of cancer and cancer care.  This research provides unparalleled perspectives among people with cancer, caregivers, and the healthcare workforce.'

Matthew B. Schabath, PhD, Moffitt Distinguished Scholar, Program Leader, Cancer Epidemiology Program,  Senior Member, Departments of Cancer Epidemiology and Thoracic Oncology, H. Lee Moffitt Cancer Center & Research Institute, Tampa, Florida USA

'Out with Cancer" is a groundbreaking, compassionate, and urgently needed call to action, a blueprint we can use to transform our cancer care systems to account for the deeply complex and vulnerable experiences of LGBTIQ+ people with cancer and their carers.'

Charles Kamen, PhD, MPH, he/him, Department of Surgery, University of Rochester, USA.

Table of Contents:

Contributors

Acknowledgements

1        Introduction: LGBTIQ+ People are an Invisible Diversity in Cancer Care

          Jane M. Ussher, Rosalie Power, Kimberley Allison, Janette Perz

2        “Surviving discrimination by pulling together”: LGBTIQ+ cancer patient and carer experiences of minority stress and social support.

          Rosalie Power, Jane M. Ussher, Janette Perz, Kimberley Allison, Alexandra Hawkey, and the Out with Cancer Study Team. 

3        Re-imagining Queer Embodiment: Challenges to Sexuality and Intimacy after Cancer

          Jane M. Ussher, Sam Sperring, Amanda Denes, Rosalie Power, Janette Perz, Samantha Ryan, Chloe Parton, Gary W. Dowsett, Colin Ellis, Kimberley Allison

4        “Oh my god, I’m going to wet myself”, Gay and bisexual men negotiate incontinence during cancer

          Colin Ellis, Jane M. Ussher, Rosalie Power, Alexandra Hawkey

5        Addressing the Fertility Concerns of LGBTIQ+ People with Cancer: A Reproductive Justice Perspective

          Alexandra Hawkey, Jane M. Ussher, Rosalie Power, Janette Perz  

6        The Queer Temporality of Chronic Illness

          Sam Sperring, Jane M. Ussher, Rosalie Power, Alexandra Hawkey 

7        Gender Euphoria or Disruption of Gender Affirmation:  Cancer Impact on Transgender Embodiment and Identity

          Jane M. Ussher, Rosalie Power, Kimberley Allison, Janette Perz, Chloe Parton, Colin Ellis, Teddy Cook  

8        A Human Right Violation: Medical Regulation of Intersex Bodies to Reduce Poorly Evidenced Risks of Cancer

Jane M. Ussher, Morgan Carpenter, Rosalie Powe, Samantha Ryan, Bonnie Hart, Janette Perz, Alexandra Hawkey

9        Developing Identities in the Context of Cancer: LGBTIQ+ Adolescents and Young Adults (AYAs)

          Kimberley Allison, Jane M. Ussher, Janette Perz, Rosalie Power, Samantha Ryan, Fiona McDonald, Kerry H. Robinson, Cristyn Davies  

10      Pushed to the Sidelines: LGBTIQ+ Cancer Carers

          Kimberley Allison, Jane M. Ussher, Janette Perz, Rosalie Power  

11      Being Out with Cancer: LGBTIQ+ Disclosure and the Impact on Cancer Care and Satisfaction

          Rosalie Power, Jane M. Ussher, Kimberley Allison, Alexandra Hawkey, Janette Perz 

12      Egalitarian, Inclusive, or Hostile? Healthcare Professional Perspectives on LGBTIQ+ People with Cancer

          Jane M. Ussher, Rosalie Power, Janette Perz, Alexandra Hawkey, Kimberley Allison

13      What Patients Want: Recommendations for Policy and Practice in LGBTIQ+ Cancer Care 

          Rosalie Power, Jane M. Ussher, Alexandra Hawkey, Janette Perz, Samantha Ryan, Jenni Bruce  

Index