Sharing diverse experiences of oncology care can help those impacted by cancer navigate the medical system.
A new book on experiences of cancer and treatment opens the “black box” of oncology care.
Being Patient: Close Encounters in Cancer World, written by UNSW academics Dr Na’ama Carlin, Associate Professor Siobhan O’Sullivan and Scientia Professor Louise Chappell, examines the “hard questions, trust issues and power dynamics” of what the authors call Cancer World.
The book draws on interviews with cancer patients, their family members and healthcare professionals, including oncologists, GPs, nurses, surgeons, radiologists, researchers, and death/end-of-life and palliative care professionals.
Being Patient brings experiences from “both sides of the desk” into dialogue, says Dr Carlin from UNSW’s School of Social Sciences.
“It aims to give patients and carers the vocabulary to engage with Cancer World; to provide healthcare professionals with insights into the patient experience; and to give patients greater understanding of the pressures and challenges their specialists face.”
More than 165,000 Australians experience what the authors call the “head-on health crash” of a cancer diagnosis every year. All three authors received life-changing diagnoses.
Prof. Chappell was diagnosed with metastatic breast cancer in 2009, with recurrences in 2016 and 2020; A/Prof. O’Sullivan with ovarian cancer in 2020; and Dr Carlin with breast cancer while pregnant in 2021.
Being Patient lays bare the disorientation of “crossing the threshold into Cancer World”, from accessing and enduring treatment – “the poison, the cut and the burn,” as Prof. Chappell describes it – to cancer’s associated “financial toxicity”, end-of-life considerations and the prospect of remission and recurrence.
“The book offers a snapshot of the complexities, challenges and potentialities of this overwhelmed and under-resourced system,” Dr Carlin says.
“By engendering greater understanding of the patient experience and reducing the disconnect between patients and their health professionals, we hope to improve the system for those impacted by cancer and those working in the field.”
Being Patient advocates for whole-of-patient care; “whole-of-patient care means understanding that a person’s whole life has been upended and brought into Cancer World,” Dr Carlin says.
“Doctors can walk in and out, but patients are embedded, negotiating medical hierarchies, ‘scanxiety’, gender bias, ongoing treatments and confronting diagnoses.
“When you get a diagnosis, immediately your calendar fills up with appointments. It's a full-time job just to manage the workload of medical bureaucracy; how you live your life during, and even after treatment is transformed.”
While patient-centred care is increasing within medicine, the pathologising of the patient – where the patient is a ‘problem’ to be solved – can mean patient voices are overlooked, Dr Carlin says.
Pregnant during the pandemic, Dr Carlin reported pain and a hardening in her breast. Due to COVID-19 protocols, in-person medical appointments were scarce, and she was not physically examined, receiving most of her medical care over the phone. Her concerns were allayed, the changes put down to pregnancy. She would later be diagnosed with triple-negative breast cancer, an aggressive, invasive cancer.
All three authors shared the experience of being unheard; it became the impetus for writing the book, says Dr Carlin.
“We found Cancer World overwhelming. Suddenly we were confronting our mortality; we were newly dependent on medical professionals, infantilised while at the same time having to navigate complex systems and siloed expertise,” she says.
“And yet we recognised that those experiences of disempowerment – as profound as they were – would only be amplified for marginalised people: for those living further out from the city, for those who were queer or those from a racialised minority.”
Being Patient amplifies diverse voices of women impacted by cancer diagnoses, directing attention to their lived experiences.
“The stories in Being Patient demonstrate how gender, sexuality, race, socio-economic status and geography impact everyday care practices,” she says. “A woman’s position within the medical hierarchy has real implications for her experiences of Cancer World.”
Being Patient amplifies the lived experiences of women impacted by cancer. Photo: Supplied
While more and more people are surviving and living with cancer, cancer research remains inequitable with some female-coded cancers, in particular, attracting less funding, Dr Carlin says.
“Ovarian cancer survival rates have not shifted since the 70s. Survival rates for some forms of endometrial cancer have worsened and other reproductive cancers have made only marginal improvements, while prostate and many breast cancer survival rates are now around 90%.”
Medical misogyny refers to systemic gender biases within medicine that minimise women’s symptoms and pain, delaying diagnoses and treatment and reducing health outcomes.
“Medical misogyny is not a new concept. Recent research from The Australia Institute reveals that just one in seven young women feel their GPs always take them seriously,” Dr Carlin says.
“What’s more, medical research is designed around men's bodies. What we know about the body is what we know about male bodies.”
Research has shown medical misogyny is evident in oncology care. Intersectional discrimination can be a barrier to diagnosis, treatment pathways and equity of access to care, Dr Carlin says.
“Women’s symptoms, knowledge and experiences are frequently marginalised; this is only compounded by resource constraints.”
A/Prof. O’Sullivan’s ovarian cancer was misdiagnosed as COVID weight gain, and she was sent away with laxatives and told to lose weight. Prof. Chappell's concern about a lump under her arm after receiving treatment for breast cancer was initially dismissed, allowing the cancer in her lymph nodes to spread to other organs.
Triple-negative breast cancer is more common in women under 40 years old as well as in Black and Hispanic women, Dr Carlin says.
“Black women have worse prognoses, yet they often get treated less aggressively than a white woman, with assumptions made about their capacity to afford treatment impacting healthcare access.”
Research has also shown queer patients might not disclose their sexuality to their treating team, she says. “This impacts their capacity to bring support people, to feel safe with their doctors, because they are concerned about discrimination.”
Dr Na’ama Carlin was diagnosed with breast cancer while pregnant in 2021. Photo: Supplied
Embedding the patient voice in the medical curriculum is one way to effect positive change, Dr Carlin says. “This will help doctors better understand the embodied, personalised experiences of living with cancer.”
The authors’ research found both patients and doctors wanted more time together, and doctors wanted additional training, including around talking to patients about death and dying.
“While end of life looms large for every cancer patient, doctors often still shy away from having honest and open conversations about death and dying, leaving patients confused and unprepared,” she says.
“We have to have training around these conversations about death and dying built into medical training, especially now we’ve passed voluntary assisted dying laws in NSW and other states and territories. We will have more and more of these conversations.”
Dr Carlin received her cancer diagnosis via her surgeon’s fellow. He moved without warning from small talk about the weekend to relaying that her biopsies were positive for cancer.
“It was clear that the fellow was – understandably – anxious,” she says. “I won't forget when my surgeon came in. He spoke to us, he checked in with us, but he also checked in with his fellow.
“His fellow was giving a pregnant woman a cancer diagnosis, and I appreciated the care my surgeon showed his fellow in that moment.”
A/Prof. O’Sullivan died from ovarian cancer in June 2023, three years after her diagnosis. The book both incorporates her writing and is influenced by her strength and her fight for greater awareness, investment and support for people diagnosed with ovarian cancer.
The authors write: “[We] remember her legacy, which guides us to think more clearly, advocate more fiercely, and laugh more frequently.”
The stories within the book are highly personal, yet they illustrate the broader social forces at play in Cancer World, Dr Carlin says.
“They demonstrate how medical misogyny, capitalism and discrimination come to bear on the experiences of individuals when they access something like health care.
“For every single person who spoke with us, we just felt so lucky to hear their incredible stories, to be let in, and with the doctors who made time for us in their incredibly busy schedules.
“It was challenging, but also so beautiful and such a privilege to bear witness to these stories that demonstrate the power of the patient experience to direct real-world change, to help facilitate greater support and understanding for those living and working in Cancer World.”
Enduring treatment is one of the many thresholds of Cancer World the book explores. Photo: Supplied
The book advocates for whole-of-patient care that keeps patient voices at the centre. Photo: Supplied
UNSW School of Social Sciences
Dr Na’ama Carlin | Scientia Professor Louise Chappell | Associate Professor Siobhan O’Sullivan
Pillar 7: Advance economic and social prosperity
