Uncovering the Lived Experience of Cancer Surgery
Surgery is the unspoken anchor of cancer care. How do people with lived experiences view surgical treatment and its role in cancer care?
In the series Voices in Global Surgery, we take a look behind the scenes of global surgical care.
Of all newly diagnosed cancer cases, 80% will require surgical intervention. By 2030, it is estimated that 45 million surgeries will be needed for diagnosis, treatment, and palliative care for cancer. However, at the current trajectory, only 25% of people with cancer, or even less in some settings, will have access to this life-saving care (source).
These are the statistics, and they paint a clear picture of the need to improve access to surgical care. But how do people with lived experiences view surgical treatment and its role in cancer care? People-centred care is a timely topic in the cancer space, receiving increasing attention. Through recent normative advances, WHO outlines the irreplaceable value lived experience plays in informing global cancer control. And the topic recently was a key focus during this year’s World Cancer Congress in Geneva, where the WHO hosted a special consultation on co-creating priorities for cancer 2030 with people affected by cancer.
Surgery is often the first interface in a cancer diagnosis. It sets the tone for the whole process, the whole experience, right there in the surgeon’s office. Communication skills and training, drawing on the input of people with lived experience, are essential for surgeons.
— Carolyn Taylor, Global Focus on Cancer
In this series entitled “Voices in Global Surgery”, we set out to amplify the voices of people with lived experience in cancer care and surgery. We spoke with survivors from Indonesia, China, Malaysia, the Philippines, Lebanon, Egypt, and the United States via interviews and focus group discussions to learn how we can further include their expertise to inform global cancer control programming. One thing is clear: surgery is the unspoken anchor of cancer care. And, as such, we must do much more to ensure that the voices of people affected by cancer are heard in global surgery.
It can take months to get the necessary surgical treatment, if at all
We know that early diagnosis and prompt treatment are key to ensuring successful outcomes for cancer. The WHO Global Breast Cancer Initiative (WHO GBCI) implementation framework focuses on narrowing three main intervals: pre-diagnostic, diagnostic, and treatment. We also know that in reality, diagnosis and treatment are often delayed and that patients present late or don’t receive the treatment they need. What are the perspectives of people affected by cancer on the barriers to diagnosis and access to surgery?
One cervical cancer survivor from Indonesia weighed in. “It took seven to eight months to get my operation for cervical cancer, due to unawareness of symptoms, delay of biopsy, multiple visits to different doctors for opinions, and ultimately, prohibitive cost.” Access to surgery means access to affordable surgery, for all people who need it.
In other settings, access to surgery is limited by human resources. “There are only two gynaecologic oncology surgeons in Kenya, which causes major delays in women getting the surgeries they need for cervical and ovarian cancer,” noted one health professional. Throughout our programming in low-resource settings at the Global Surgery Foundation (GSF), we focus on prioritising healthcare workforce training to advance quality of care and access to specialised care.
Similarly, in Hong Kong it can take months to access the necessary surgical intervention due to a shortage of surgeons. “In a public hospital, it takes at least six to eight weeks to get surgery, which places a heavy mental and physical burden on the patient,” shared one breast cancer survivor. “When you are in this situation, it is very difficult to determine whether this timeline will lead to the cancer progressing and potentially worsen your outcome.”
People with cancer are often expected to know which questions to ask
Even in countries where surgery is accessible, surgeons may only have a few minutes to discuss a treatment plan. A lack of shared decision-making can be the result. Several participants noted that in some areas of China, one clinician is seeing up to 100 patients a day. This leads to an average consultation time of just three minutes. Accordingly, patients can be left feeling their concerns were unheard and questions left unanswered.
Moreover, the onus of knowing which questions to ask often falls on the patient during one of the most stressful moments in their lives: diagnosis. Carolyn Taylor, Founder of Global Focus on Cancer and a survivor of ovarian and endometrial cancer, challenges the cancer community to shift this burden away from people affected by cancer, and on to medical professionals, such as care providers. Systemic approaches, which integrate communication training for providers with patient navigation programmes, can allow people affected by cancer to feel supported.
Key takeaways:
The Lancet Oncology Commission on Global Cancer Surgery
Taylor noted that frequently people with cancer are left to develop health literacy on their own at the time of diagnosis. The focus group members weighed in that it can feel overwhelming, after the shock of diagnosis, to be left in a situation where they feel they need to carry this burden alone.
Peer support might be a solution to make people with cancer feel less overwhelmed. A peer is a person who has lived experience in the cancer care system, who offers support, guidance, and services on navigating the patient pathway, such as what to expect for the various tests and treatments. They often act as patient navigators. “We try to bring peers in as quickly as possible,” said Taylor on her experience at Global Focus on Cancer, “and we are seeing that within the first four months after the diagnosis, they’re the most effective at providing support.” After this point, people tend to be more familiar with navigating the system.
Without active communication from the care providers, misconceptions around surgery are also a common barrier. These include the belief that surgery (or biopsies) can make cancer spread, or that older people should not have surgery because it is too difficult for them. On the other end of the spectrum, there are perceptions that “minimal surgery isn’t effective…[or] surgery cures everything,” noted Taylor.
Additionally, challenges and misconceptions may vary depending on if the person affected is from an urban or rural setting. As a result, interventions targeted at overcoming barriers to care need to be tailored to each setting. This includes educational materials for people with cancer. Focus group members agreed that educational materials should use patient-friendly words, be unique to specific patient groups, and focus not only on the side-effects, but also on quality-of-life post-treatment.
“We really need to develop better communication aids for each cancer… for people to understand what the options are and what they are dealing with,” suggested Taylor.
Moving towards a person-centred approach
Outcomes from cancer surgery depend on much more than what happens in the operating room. “In surgical decisions, we have to prioritise the holistic needs of patients in all domains – psychosocial, emotional, physical, sexual & reproductive health,” Taylor emphasised. For people with gynaecological cancers, for example, this includes support and guidance around sexual health and wellbeing after treatment, such as the possibility of early menopause. There is a lack of guidelines for supporting people with gynaecological cancers in this way, making it “an under-researched and under-resourced area of sexual health for women.”
GSF’s approach
We are currently working to understand the perspective of people with breast cancer in Rwanda and Türkiye to inform targeted interventions to improve access to care.
Moving towards a person-centred approach in cancer care would allow providers to address the unique needs of their patients, based on what they value and are concerned with. “Pre- and post-operative counselling and preparation would be really important,” Taylor noted.
The Baheya Foundation, based in Egypt, takes this approach seriously. Established in 2015, the foundation treats people with breast cancer free of charge and follows them through all stages of treatment – from early examinations to surgeries to physical therapy.
Before coming to Baheya, one breast cancer patient was told she would need surgery immediately. “I decided to postpone my treatment,” she said, “because I didn’t fully understand what the surgery would entail and what the results would be.” After arriving at Baheya through the recommendation of a patient support volunteer, she shared: “[the physician] did not shock me with my diagnosis. Rather, he gave hope about the treatment, that this was not the end but that I could lead a normal life throughout the entire treatment journey.”
To create a culture around person-centred care, doctor-patient communication skills need to be included in medical training curriculum. “Surgery is often the first interface in a cancer diagnosis,” said Taylor. “It sets the tone for the whole process, the whole experience, right there in the surgeon’s office. Communication skills and training, drawing on the input of people with lived experience, are essential for surgeons.”
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This is the first article in a new series
Voices in Global Surgery
With the global momentum towards the meaningful engagement of people with lived experience, it becomes even more important to bring out these voices in conversations around global surgery. People with lived experience provide a unique expertise that is irreplaceable in understanding and filling the gaps in quality surgical care for all who need it. In this series, we will continue to dive deeper into the key barriers, gaps, and opportunities for progress towards surgical care for all, identified by those most affected.
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