CANCER IN SOUTH AFRICA: Behind each cancer statistic is a person who needs the best care on offer

For more than 30 years, I have worked with people at the moment when the word “cancer” changes the direction of their lives. From this position, I find the question of whether cancer diagnosis rates are surging both important and incomplete.

We must, of course, understand whether cancer incidence is genuinely increasing. South Africa is “ageing”. Our lifestyles are changing. Obesity, inactivity, alcohol, smoking and dietary patterns all contribute to the risk of different cancers. But when I hear that more people are being diagnosed, I do not automatically hear only bad news.

I also know that we may be finding cancers that, three decades ago, we would have found much later – or perhaps never at all. There is no virtue in cancer being invisible.

When I began working in breast cancer, the international perception of it in Africa was dominated by late presentation. When trying to set up a breast clinic at Baragwanath Hospital over 30 years ago, I was met with pushback from my seniors who told me: “We do not see breast cancer in the black population.”

It took me and one of the first patients I treated there, “Mama Louisa”, only two months of awareness campaigns in Soweto to have a clinic that was seeing 150 patients per week. Mama Louisa died last year of old age, 30 years after she was diagnosed and treated. Hers is a story that highlights the importance of early diagnosis.

Patients in the past – and, unfortunately, still far too many today – often arrived with large, locally advanced cancers. Treatment choices back then were narrower.

Mastectomy was far more common, not because removing a breast was somehow a better philosophy of care, but because by the time the disease was diagnosed, breast conservation was often no longer realistic. Access to integrated imaging, pathology, systemic therapy and radiotherapy was also not what it is today.

Statistics that matter

This history matters when we look at modern statistics. A country that records fewer cancers is not necessarily a country with less cancer. It may be a country that is diagnosing less cancer.

The number that interests me as a clinician is therefore not simply how many people are being diagnosed, but when they are being diagnosed and what choices become possible for them once we know about a cancer diagnosis.

I am interested in the delays to treatment and where they happen, and in recording the differences between when people present with early- or late-stage disease and the factors surrounding these differences. Understanding them will equip us with the knowledge and tools to change the narrative.

Earlier diagnosis changes everything. It can mean a smaller operation. It can mean conserving the breast. It can mean less surgery in the axilla. It can mean more accurate selection of oncology drug treatment (be it chemotherapy or other treatments), endocrine therapy, targeted therapy or radiotherapy. In some patients, it can mean confidently avoiding treatment that is unlikely to add meaningful benefit.

That is an extraordinary change from the medicine I entered more than three decades ago. The direction of modern cancer care is not towards doing more to every patient. It is towards doing the right amount for each patient.

This is what we mean by personalised care. Breast cancer is not one disease. Two women of the same age with tumours of the same size may need very different treatments because the biology of those cancers is different.

We now look at receptors, molecular features, genetics where appropriate, stage, age, general health and the person sitting in front of us. We consider not only whether a treatment can be given, but whether it should be given and what meaningful benefit it offers that particular patient.

Understanding better care

Personalisation works in two directions. Sometimes it allows us to escalate treatment because we understand that this cancer has a higher risk of spreading and can thus target it more effectively.

Just as importantly, it allows us to de-escalate.

De-escalation is one of the most important developments in modern breast cancer care. It does not mean undertreating cancer. It means understanding cancer well enough to stop equating more treatment with better treatment.

For selected patients, modern care can mean less extensive surgery, shorter courses of radiotherapy, avoiding chemotherapy where the likely benefit is extremely small, or reducing interventions that add morbidity without improving outcome.

The old measure of a good cancer doctor could too easily become: how much treatment did we deliver? A better measure is: did we deliver the treatment that this person actually needed? This requires science, but it also requires systems.

South Africa has the expertise to deliver breast cancer care that stands alongside excellent international centres. I have seen that transformation directly.

We should be very careful with the language that assumes patients in Africa must accept an inherently lesser standard of care. The gold standard does not belong to a country. It is a standard.

When cancers are diagnosed early, when radiologists, pathologists, surgeons, medical oncologists, radiation oncologists, genetic specialists, nursing teams and allied health professionals work together and patients have access to the necessary treatment, our outcomes can compete with excellent centres anywhere in the world.

A matter of access

In breast surgery, this is particularly visible.

Modern multidisciplinary care allows us to offer breast-conserving treatment to the great majority of appropriately selected patients. In our own practice, breast-conservation rates for malignant disease now sit above 90%. This would have seemed extraordinary when I began my career.

But saying we can provide world-class care is not the same as saying every South African can access it. This is where the conversation must remain uncomfortable.

An increase in diagnosis is only progress if diagnosis is connected to treatment. Awareness without access is not enough. Screening without a pathway for assessment is not enough. A biopsy without timely pathology and a treatment plan is not enough.

If South Africa is moving in the right direction, then our next challenge is to make this direction available to more people.

A part of that is public awareness. People should know what changes require assessment and should not wait for the next routine screening appointment when they have a new symptom. Screening is for the well woman; symptoms require diagnosis.

A part of it is prevention and lifestyle. We have to speak openly about weight, diet, physical activity, smoking and alcohol because they form part of the cancer landscape. But we must do so without turning risk into blame.

Cancer is biologically complex. A healthy person can develop cancer, and somebody with multiple risk factors may not. Lifestyle is about modifying risk where we can, not assigning guilt after a diagnosis.

We also have to recognise that “lifestyle choice” is not always a fair description. Food, environment, safety, work and access to preventative healthcare are shaped by society. Cancer prevention cannot simply be a lecture delivered to an individual; it is a public health responsibility.

Quality and consent

And then there is something much less glamorous than a new drug or a robotic operating theatre: quality assurance.

I am a great believer in accreditation because good intentions are not enough. Accreditation asks us to prove what we say we do: multidisciplinary discussion, measured outcomes, documented decisions, reviewed complications and comparison with recognised standards.

This culture matters enormously as cancer care becomes more personalised. Personalisation must never become an excuse for inconsistency. If anything, individualised medicine demands stronger systems because we need to explain why a treatment was right for one patient and unnecessary for another.

The other essential part is consent. Consent is not a signature on a form. It is a patient understanding the options, trade-offs and consequences. It is the difference between telling a woman what will happen to her and making a decision with her.

If we are serious about personalised care, the patient has to be part of the personalisation. This means explaining not only what we can do, but what we do not need to do – why conserving the breast may be oncologically safe, why more surgery is not automatically safer, or why chemotherapy may offer enormous benefit in one cancer and almost none in another.

This is perhaps the change that gives me the greatest optimism. We are becoming less frightened of doing less when less is enough, and more sophisticated about doing more when more is necessary.

Opportunities opening up

So, are cancer diagnoses increasing? In some areas, undoubtedly. Population ageing and changing exposures mean we must take the growing cancer burden seriously.

But an increase in recorded diagnoses can also tell us that awareness is improving, diagnostic pathways are working and diseases that once arrived at our doors at terrifyingly advanced stages are being found earlier. Those are very different stories hidden inside the same statistic.

I do not want South Africa’s ambition to be simply to record fewer cancer diagnoses. I want us to see fewer late diagnoses. Fewer unnecessary mastectomies. Fewer treatments given because “that is what we have always done”. Fewer people lost because geography, income or system fragmentation kept them from timely care.

And I want more patients to hear, after the shock of diagnosis, that they have options.

A cancer diagnosis is not a victory. But finding cancer accurately and early gives us something precious: the opportunity to act.

Thirty years ago, too much of the African breast cancer story was written after that opportunity had already begun to disappear. Today, we have the knowledge and, increasingly, the tools to write a different story – one based on earlier detection, accountable systems, informed consent, personalised treatment and, where appropriate, less treatment rather than more.

That is not complacency about rising cancer rates. It is progress and the direction in which we need to keep moving. DM

Professor Carol-Ann Benn is a Fellow of the College of Surgeons of South Africa and heads the internationally accredited, multi-disciplinary Breast Care Centre of Excellence at Netcare Milpark Hospital. She sits on numerous Medical Boards and Healthcare Committees, and lectures at Wits University.

This story first appeared in our weekly DM168 newspaper, available countrywide for R39. The e-edition of DM168 is now free for readers who are signed into their Daily Maverick account. Click on the cover of the newspaper below to access the e-edition.