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The challenges faced by women in South Africa with breast and cervical cancer, two of the most prevalent forms of cancer constituting over 20% of all new cancers among SA women, are endless and shamefully so. This article by Chris Bateman looks at the harrowing experience these women are forced to endure, over and above the turmoil inflicted by their cancer diagnoses and crippling deterioration resulting from both cancer and chemotherapy, due to the litany of ways in which cancer treatment in South Africa has failed its citizens. The simple comparison between the comprehensive quality of cancer treatment and support provided by SA’s northern neighbour Botswana to its citizens casts a dark and regrettable shadow on our country’s inexcusable dereliction of its basic duty towards its people. This article was published on Medbrief Africa. – Nadya Swart
Experts – and a survivor – unpack women’s cancers.
By Chris Bateman
With breast and cervical cancer prevalence at over 20% of all new cancers in South African women and highly effective immunotherapy only within reach of the wealthy, Shelden Masondo, 43, of Roodepoort, is one of the lucky ones.
A fortuitous housecleaning accident involving her daughter bumping into her breast led to the mother of three obtaining a relatively early diagnosis of aggressive Triple Negative Breast Cancer (TNBC).
She was addressing a round table media briefing entitled, “Women’s Cancer, understanding triple-negative breast cancer and the patient journey,” on the sidelines of the European Society of Medical Oncology conference in Cape Town on Friday, 10 February.
The mother of three said her right breast swelled up, and she felt a lump. A sonar, mammogram and biopsy followed, with the TNBC diagnosis coming on 28 April 2016.
“It turned my life upside down. I was confused, angry and in denial. After my first two chemo sessions, I became ill, lost my hair, my nails turned black, and I had black spots on my tongue,” she recalled.
Back at home and weak from heavy chemo sessions one morning, she broke down crying as her husband prepared their children for school.
“I couldn’t take it anymore. I didn’t realise the kids were at the door, and I saw the fear in their eyes. It was then that I realised I had to fight this differently.”
She called CANSA (the Cancer Association of SA) and had a long chat with a counsellor who encouraged her not to give up and make good on her promise to fight her cancer with a more positive attitude.
“There was no way I was letting it take over my life. I had 12 cycles of chemo – the first six didn’t work, so they changed to a different type. It was tough and changed my body in so many ways, which I found hard to accept. After a further 12 cycles, I went for a single breast mastectomy, had a two-month break – and then had 25 cycles of radiation.”
Masondo, now in complete remission, says her family were supportive but unable to understand what she was going through. Salvation came in the form of women survivors with ‘Cancervive’ (an NGO).
“For the first time, I felt I belonged somewhere. I vowed to help township and rural folk full of superstition and without knowledge or access to care. I initially believed cancer was a white man’s disease and that only older people got it,” she admitted.
Determined to live a healthy life and demonstrate there was life after cancer, she inadvertently fell pregnant and was ‘blessed with a baby boy’, prompting her oncologist to remark, “When I said celebrate your successful treatment, I meant a glass of wine, not that!”.
The media round-table cyber link to Masondo was cut when she became overwhelmed with emotion.
Empathic NGO makes a difference to SA women with cancer.
CEO of Cancervive, a survivor-driven awareness, detection, education and treatment access NGO, Marlene Nortje, of Pretoria, told of her women’s cancer survivor biker group journeys to deep rural areas to share stories, dispel myths and instil hope.
“So many people hold these traditional beliefs that cancer is contagious, some kind of punishment, bewitchment, a white man or old person disease. When we arrive on our bikes in colourful outfits, share motivational stories, and speak positively, often in their language, it’s amazing to see their reactions and the hope it instils. It’s like, “Wow, did these people really survive cancer?!” she added.
While over 80% of people her group addressed relied on the public sector, many with private medical aid also neglected to go for regular (or any) check-ups.
“When it comes to discovering cancers, it’s tricky. Beliefs or myths get in the way, especially for ‘shy’ cancers (like vaginal, testicular or breast). There’s the fear of rejection by partners, their families or the community. They simply don’t know what to do, and there’s not always easy access to care. There’s shock, disbelief, fear, and confusion. Often, if they’re lucky enough to get a diagnosis, it’s associated with death, and they’re uncertain how to share the news with their loved ones. They’re unfamiliar with medical terms – unprepared. They don’t know what questions to ask and often can’t afford or arrange transport to a healthcare facility,” said Nortje.
She said Cancervive had just two ‘navigators’; one based at Chris Hani Baragwanath Hospital dealing with 250 newly diagnosed patients every Wednesday morning.
“In the private sector, patients often have medical aid challenges, and they get discouraged or simply can’t afford the treatment. Healthcare professionals often don’t work as a team, for example, with co-morbidities like diabetes or HIV. Also, the patient often doesn’t know how to communicate co-morbidity. Emotional support, or the lack thereof, is a huge factor. They don’t know how to deal with body changes, reconstruction or prosthetics, or even what options are available. We aim for body acceptance, self-care and creating supportive relationships around them, what to expect in treatment and how their bodies might react,” she said.
She said Cancervive was one of only two organisations that had trained navigators in SA and raised their own funds to offer the service. She added that only tertiary hospitals in the public sector had dedicated social work departments which provided ‘limited support’. Besides that, there was nothing.
Botswana – a cautionary cancer tale.
Professor Peter Vuylsteke, Head of the Department of Medicine at the University of Botswana and past president of the Belgian Society of Medical Oncology, said that cancer was overtaking TB in Botswana as the leading cause of death in HIV patients. He said the situation in sub-Saharan Africa was becoming dire.
“There’s insufficient reporting, and 70% of patients present late in advanced stages with high mortality rates. Most are breast and cervical while the other HIV-related cancer, Kaposi’s Sarcoma, is declining, mainly due to ARVs, though people are still getting infected with HIV.”
Cervical cancer remained despite HIV being more under control. A considerable expansion of HPV vaccination programs was needed for children between nine and 14 years old. Often boys were excluded from vaccination which prevented not only cervical cancer but vulva, penal and anal cancers – and avoided HPV transmission.
The state of the economy was making lifestyle changes more difficult, with the price of all healthy consumables increasing rapidly.
Prof. Vuylsteke called for a major step up in dedicated screening programs with sufficiently skilled healthcare workers and improved transport assistance.
“Overall, the benefits must outweigh the harm in these programs – so don’t submit people to annoying tests unless they have symptoms. Cervical cancer in Botswana makes up 25% of all female cancers, and 60% of them have HIV, with most presenting very late,” he revealed.
Only 24% of women surveyed said they had been screened before getting cancer, and the average waiting time for blood and other pathology tests was 200 days.
“People with HIV should be screened more. You’d expect more detection, but we’ve found that you must screen from 25 years and younger because, after that, cervical cancer becomes very aggressive. You also need repeat screening after three years, and all those who screen negative should have it repeated. Any woman with positive screening should be evaluated and treated within an acceptable time -but that’s also a real challenge,” he lamented.
Prof. Vuylsteke backed the WHO recommendation for LMIC countries to use clinical breast exams as a first-line screening, saying mammography detected cancer in one in a thousand women, with no proven survival rate compared to physical examinations.
“Yes, it does save lives compared to doing nothing, but you can’t compare it to a systematic clinical breast examination – and it’s costly and is perhaps valuable logistically, especially for a yearly follow-up for those who’ve had breast cancer or for verifying a physical exam.”
He was not overly keen on the hand-held ‘I-BreastExam’ scanner for lump detection in breasts. Although it was more sensitive, he said it was less specific, detecting nodes and lumps but not cancer – with no superiority over physical breast examination. It was also fragile and could break if dropped.
He punted widespread teaching of oncology to non-oncology healthcare professionals, screening for early detection and “cancer plans that are implementable and guidelines that are easily understood and followed.”
He said Botswana had seven government-paid non-clinical cancer navigators (patient support) whose most important tasks were in the community – before admitting people to the hospital.
The country also had 15 nurses trained in navigation skills with state-airtime sponsored virtual communication devices (cell phones or computers) for quick referrals, questions and education, and a program to ensure all hospitals had working wi-fi capacity.
Award-winning global clinical trial researcher and Karoo farmer, parent and musician Dr Irene Boeddinghaus outlined the mechanisms of the revolutionary new immunotherapy drug Pembrolizumab (aka Keytruda). She said several cancers, including breast cancers, ‘disappeared completely” after immunotherapy and surgery – with a 14% cure rate which translated into a long-term survival benefit. However, it was expensive, available only to those with higher-end medical aid plans and came with side effects such as hypothyroidism (“you’re messing with the immune system”) and some toxicities.
“For the first time in a century of treating TNBC, we’ve found a way to use the body’s own immune system to kill off the most aggressive and treatment-resistant of these diseases. It’s mind-blowing. In time these small gains will become large – that’s how science advances, and in time we’ll learn how to manage the toxicities and limit them to a mere inconvenience.”
She paid tribute to all the women who had put themselves through immunotherapy clinical trials saying they showed extreme courage, not knowing whether the treatment would work.
“Unfortunately, this stuff is expensive, both in SA and worldwide. It’s available in many private hospitals but not the state ones. People often end up with co-payments. Hopefully, in time, it will become cheaper,” she concluded.
- The ESMO (European Society for Medical Oncology) conference, considered one of the most authoritative globally, ventilates controversies and highlights the latest research, therapeutic practices, and technological advances in oncology. However, while hundreds of medical and clinical oncologists, pharmacists, nurses, students, fellows, residents, general practitioners in oncology, and other oncology healthcare professionals attend, journalists – including science and health writers – are barred. No explanation had been forthcoming from ESMO at the time of writing.
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