Breast cancer: The far we've come and the warriors caging the beast

More than a decade ago, Lilian Obetto was diagnosed with breast cancer.

A year prior to 2012, a gynaecologist had misdiagnosed her with fibroadenoma—a painless, unilateral, benign (non-cancerous) breast tumour that is solid and mostly occurs in women aged 14 to 35 but can be found at any age.
As the lump grew bigger, she got concerned and opted to seek a second opinion.

At the time, she was an executive in a firm selling fresh and processed meat in Mombasa County. Armed with her insurance, she walked into a private hospital, one of the few offering high-quality services.

Here, she met a health professional who advised her to take a biopsy test—taking a piece of tissue or a sample of cells from the body for testing in a laboratory to establish the presence of cancer.

When the results came out, all she remembers is the doctor telling her to “rush to Nairobi for treatment.”

“The hospital had an oncologist, but you can imagine they didn’t have the equipment for surgery, radiotherapy and chemotherapy. I had to be referred to Nairobi,” she says.

In the Breast Cancer Screening and Early Diagnosis Action Plan (2021-25), published in October 2021, acting Director-General for Health Patrick Amoth identifies breast cancer as the leading type of cancer in Kenya, accounting for 16.1 per cent of all cancers.

The Health ministry further highlights the worrying occurrence of the disease among the young population aged 35–50, unlike in Western countries where the concentration is within the 50–55 age bracket.

Lilian was only 37 years old then.

Towards the end of 2012, she underwent lumpectomy – a type of breast cancer surgery in which the tumour and a small amount of surrounding tissue called the margin is removed. This was followed with chemotherapy and radiotherapy sessions, a treatment that was not only too costly but also came with uncomfortable side effects.

“I didn’t like Tamoxifen and I couldn't afford Herceptin,” she recalls.

“A dose of Herceptin costs between Sh70,000 and Sh200,000 depending on where you’re buying it from and if it's generic.”

This made her miss out on some medication. Unfortunately, the disease metastasised. The cancer cells broke off from the breast tumour, travelled through the bloodstream and developed new tumours in her brain. She recently had a surgery to remove the cancerous tumour from her brain.

Lilian has moved from formal employment to running awareness campaigns on cancer. She also runs a retail technology company, RetailPay, which she started with a colleague in 2017.

Thanks to the National Health Insurance Fund (NHIF) cancer care package, friends, family and savings, she is able to manage the treatments and palliative care.

Looking back, Lilian appreciates the progress the country has made in breast cancer diagnosis and treatment.

“You can imagine in 2012 I had to come all the way to Nairobi for treatment. Now, you can access the services in your county,” she says.

At the time, only two hospitals in Kenya offered comprehensive cancer care – Kenyatta National Hospital and Moi Teaching and Referral Hospital. Now, there are 15 more government-owned cancer centres across the country where women and men can go for ultrasound or mammogram.

Men, too, develop cancer. They account for less than one per cent of all breast cancer cases in Kenya, says data from the Ministry of Health.

In 2017, NHIF introduced an oncology package, which covers six sessions of basic chemotherapy and four for complex chemotherapy, annually.

Lilian, however, says the government medical insurance provider ought to increase the sessions to at least nine to reduce the financial burden on cancer patients as the chemotherapy is done every three weeks.

The World Health Organisation estimates that globally, more than 2.3 million cases of breast cancer occur each year. In Sub-Saharan Africa, annual breast cancer incidence stands at 33.8 per 100,000 women, as indicated in a 2018 study published in the World Journal of Surgical Oncology.

Globally, public and private hospitals have adopted technologies to increase the survival rate of cancer patients. Last September, Bradford Teaching Hospitals under the National Health Service Foundation Trust in England adopted Magseed technology, a painless innovation for removing cancerous tumours.

With Magseed described as a magnetic, unbreakable seed smaller than a single grain of rice, surgeons can locate the exact location of the cancer inside the lump.

Massachusetts Institute of Technology researchers have also designed a wearable ultrasound device that could allow people to detect tumours in early stages.

In South Africa, there are mobile mammography units, making screening accessible to women in rural and urban areas.

In Uganda, two information technology experts have developed a glove that produces ultrasound images of a screened breast and transmits them via phone for analysis.

Kenya has also made progress. For instance, in 2021, MP Shah Hospital introduced a new surgical option, Sentimag technology, which enables surgeons to detect tiny tumours.

“As breast cancer screening programs have advanced, tumours are now detected much earlier, so they are smaller, less defined and harder to feel.

“In fact, 50 per cent of all breast tumours cannot be felt at diagnosis,” Dr Marek Ostwowski, oncoplastic breast surgeon at the hospital is quoted, in an article announcing introduction of the new technology in the facility’s website.

“This technology is designed to guide surgeons using Sentimag to locate impalpable tumours for biopsy and has many advantages over wire and radioactive seed localisation,” he added.

According to findings recently published in BMJ, a peer-reviewed medical journal, women diagnosed with early breast cancer are 66 per cent less likely to die from the disease than they were 20 years ago.

Researchers from the University of Oxford found prognosis for women with early invasive breast cancer has improved substantially since the 1990s. And most women can expect to become long-term cancer survivors.

They found the risk of death within five years of diagnosis for women diagnosed between 1993 and 1999 was 14.4 per cent compared to 4.9 per cent for those diagnosed between 2010 and 2015.

They attribute the decline in mortality rates to new treatments, improved radiotherapy, better detection and breast screening and studies that have uncovered varying characteristics of breast cancer.

At the grassroots, cancer advocacy groups are making efforts in raising awareness through community-based outreaches and distributing information booklets.

Since 2017, Kenya Network of Cancer Organisations (Kenco), an advocacy group with a membership of 60 organisations spread across the country, has distributed information booklets tailored to cancer patients and their caregivers, through 30 hospitals.

The distribution schedule is based on the workload of the facilities. Some receive the information materials monthly like the Kenya National Hospital (KNH); others quarterly.

“In KNH, the numbers have been increasing. At the start of last year, we were at 300 booklets, now it's 500. Perhaps the reason why the numbers are going up is the increased awareness,” says Kenco executive director Christine Mugo-Sitati.

Over time, they also established that the public yearned to know more about cancer. They, therefore, fund-raised to produce the booklets for the public.

In 2021, they started to distribute them through hospitals and community outreaches. They are available in English, Swahili and 11 other local languages.

“We have seen adherence improving,” she notes in reference to the impact of the increased awareness among patients, caregivers and the public.

One of the objectives of awareness is to empower Kenyans to take the initiative to demand breast cancer screening when a health professional hasn’t suggested so.

“You have a right as a patient to tell a doctor that I was doing self-examination and I’m feeling a lump; can we go further? Let’s do an ultrasound or mammogram,” she says.

Dr Dulcie Wanda, a clinical and radiation oncologist at Kenyatta National Hospital, reaffirms this further. She says individuals and health professionals need to have a high suspicion index of breast cancer.

“You need to know what's normal; how your breasts look like before, during and after your menstrual cycle,” she guides.

“If you realise your breast has become larger than the other one, or changes on the skin like it's looking like an orange peel with dimpling, that’s something you need checked. If your nipples were all along facing out and suddenly one has pulled inward or there is a discharge coming out of your nipple, go for a clinical examination.”

She cites late presentation as a major problem blocking early detection of breast cancer.

“And it is not a late presentation in the sense that the patient has not been in hospital but because breast cancer is not high on the list of suspected diseases,” she notes.

“We treat it as an infection or mastitis, or anything other than cancer, and by the time we treat it as cancer, it has probably taken a while.”

‘I embraced the scars. I said I love you Mildred…’

She had just resigned from her communication job at African Women's Development and Communication Network. She was busy building her brand through her website: mildredngesa.org.

Then a stranger knocked on her door. A stranger who gave Mildred Ngesa the steam to spread the gospel of hope across the African continent – breast cancer.

The disease drains one financially, emotionally and socially as people assumed to be friends flee one by one. As Mildred puts it, “people start tiptoeing around you. They treat you as if you’re a case in a museum.”

Mildred is a renowned journalist who worked in print and electronic media for nearly three decades, before switching to women’s rights advocacy.

The train has now left the railway and steered to new tracks. In her LinkedIn profile, she describes herself as a hope advocate, a brand she embraced towards the end of 2021, when she was in the middle of rowing against storm-tossed waters.

But in her heart, mind and soul, Mildred knew she was in no way going to let the storm drown her, for “breast cancer must bow now, now and now!”

Her website’s homepage has a colour scheme of orange; a colour of hope, magnified by her brand statement “Marketing hope.”

Take the case of Mary*, who recently got distressing news from her doctor. She had breast cancer and it had metastasised.

In medical terms, this level is referred to as Stage IV as the cancer cells have broken off from the central point, the breast, and spread to major organs, including the lungs, liver and even the brain.

She felt like she had hit rock bottom and needed someone to hold her hand. She turned to a cancer support WhatsApp group and shared her fears.

Few minutes later, an audio message came through.

“I would encourage you not to focus on Stage IV. It doesn’t matter. You win it from the mind, in your heart and faith. I pray that you keep standing. Don’t even talk about it. I decided not to talk about the stage because it doesn’t matter. The stages are reports given by the doctor, but God is the ultimate doctor.”

This was Mildred’s message of hope.

Her encouragement was such a relief to Mary and to the more than 90 cancer warriors in the group, some of whom live outside Kenya.

Why market hope?

Before the discovery of the disease, Mildred had been mistreated with mastitis.

Then in January 2021, she slipped and fell in the house. She hit her head, but the pain in her arm was unbearable. Her mother offered to massage her with a pain relief oil. As she did, she caught a painless stone-sized lump under her right armpit.

This disturbed her mother very much. Her excruciating pain coupled with her mother’s deep concern pushed her to google for a breast specialist. She found one in Nairobi. Breast cancer never crossed her mind.

Even though the outcome of the biopsy hit her hard, the radiologist, she says, delivered the message in a humane and optimistic manner.

From then on, she chose hope.

“It was totally clear to me that it’s either I market hope, or we will be totally hopeless,” she says.

“Breast cancer is a beast and when you have it, everybody looks at you and says it’s a death sentence. Unless you have something more powerful than the beast, then how do you fight?”

She goes on: “I tell cancer warriors as long as your eyes are open, get up. Look at what you can do to keep going. Whatever progress you make, it’s big enough. Even if it’s finishing a plate of food or a mug of porridge without throwing up, that’s big enough.”

Her journey has taught her varied lessons ranging from the power of kindness and acceptance, the importance of true-hearted caregivers, the blessing of family members and how the National Health Insurance Fund (NHIF) saves a life.

To date, neighbours, friends and colleagues show up at her door with a bunch of essentials. People unknown to her too, support her financially. On her speed dial are nurses and a pharmacist, who she calls whenever she needs help. They also remind her to stock up her medicine.

Mildred had a mastectomy, a surgical procedure involving the removal of all or part of the breast. She has done eight sessions of chemotherapy and 31 of radiotherapy. And currently, she is on oral medication.

At some point, radiotherapy fatigue would overwhelm her. But as she drove past the hospital gate, the uplifting welcome from the guards left her strong enough to soldier on.

“They would ask me, ‘how many have you done?’” she says.

“Then, they’d say, ‘Madam! This one, you’ve finished,’” she says, “Another time, they would clap for me, saying, ‘you’re so strong madam.’”

Her family also came through. Her elder sister, who heads a school in Kenya, spent almost a year with her, accompanying her to hospital and taking care of her. “Every cancer warrior deserves a caregiver like her,” she says.

She also had an additional role: to mother Mildred’s children.

Mildred says her children remained stoic. They kept a brave face for mummy. In their private time, they would lock themselves in their room and cry their hearts out.

In the absence of her sister, her mother would take over, ensuring she was under their watch, every step of the way.

For a long time, she didn’t have the courage to look at the scars. When she finally did, she just gazed at herself in acceptance.

“I said ‘okay, this is us and I danced, danced and danced to a Taarab song.

“I embraced the scars; I said ‘I love you, Mildred, and you’re doing great. And thank you for fighting for your life.’’’
She insists on one thing. “Never let a cancer warrior go silent.”

By this she means: “Don’t neglect them. Don’t say she can’t work. No, call them, ask them whether they can take up the job. Don’t terminate their employment, surely, how do you expect them to survive? Cancer treatment is so expensive; it depletes all your pockets.”

Soon after the diagnosis, Mildred looked for insurance that would help her cover the treatment. She found none, she says. “The only insurance that stood with me was NHIF,” she says.

“We paid for two years, and it has walked with me throughout the battle. Every time I presented my request for approval, they’d say chemotherapy is Sh80,000, we will pay Sh40,000.”

Her only appeal to the NHIF “is to go beyond rationalising the policies and humanise them because they come in life and death situations.”

‘I was encouraged to go for prayers… others touted the healing powers of miti shamba’

Agnes Wafula, 55, was diagnosed with breast cancer stage 3 last year. She later underwent a mastectomy. She shares her story:

“The memory of August 2022 is etched in my mind. It was a month that I started having restless nights. In an attempt to make up for the lost rest, I seized every opportunity to catch some sleep. It was elusive. I would turn and toss in bed because of the pain.

“On a particular Saturday afternoon, I was lying in bed when my 14-year-old son bust into my room and said, ‘Mum, I think you have breast cancer.’ He had been on his phone for the most part of the day; searching for answers.

“I believed I had a good understanding of how breast cancer typically presents itself, often characterised by the discovery of a lump in the breast. However, in my case, the script was rewritten. There was no palpable lump, but rather, a searing, persistent pain in my armpits.

“So, I admonished him and asked, surely, how can you say that? Yet, it left me with a sinking feeling. The dark shadow of cancer had haunted my family for years. My mother lost her life to breast cancer in 1987. Her battle was a solitary one, a war fought without the aid of medical intervention. Tragically, by the time of her death, the disease had mercilessly damaged one of her breasts.

“Just last year, my aunt met a similar fate, her life claimed by colon cancer. The dual tragedies left me with a profound sense of vulnerability, a fear that I might be the next to get diagnosed with a type of cancer.

“Notably, I had long made a pact with myself that I would fight to live; by seeking professional help and not taking any short cuts during my treatment. I was encouraged to go for prayers, while others touted the healing powers of miti shamba (herbal medicine).

“By then, I lived in Nakuru with my son. I am a widow, having lost my husband in 2005. I didn’t consider the prospect of remarrying after his death, but I did have a child in 2009—my only son who’s my anchor and source of strength.

“That afternoon, I contacted my cousin, who is a physician, and he advised that I seek medical attention in Nairobi, where he works. The doctor who examined me gave me some tablets to ease the pain and I went back home.

“But one day, while I was seated watching television, I felt two ominous lumps on my right breast. There and then, I knew, I just knew that I had breast cancer.

“My son and I share a close bond, so he was the first person I told. He immediately advised that I contact my cousin again with the discovery.

“In the months that followed, my life became a whirlwind of medical tests and the excruciating wait for results. Each passing day carried a heavy burden of uncertainty.

“The fateful day the oncologist delivered the news, I felt a concoction of emotions; sorrow, fear, and relief. I was somewhat glad to have known why I was in pain.

“The CT scan showed that the cancer hadn't spread beyond its initial location. The doctor laid out a treatment plan for me – eight rounds of chemotherapy, each 21 days apart, and a radiotherapy regimen that could span anywhere from 15 to 30 sessions.

“I was initially hesitant about the chemotherapy, haunted by memories of my aunt's difficult experience with it. But I knew it was a necessary step in the fight against the disease. I embarked on the chemotherapy journey towards the end of last year. Recently, I began radiotherapy and there’s daily medication that has been added to my treatment regimen.

“I have heard of gruelling experiences with chemotherapy, but it was easy on my body. However, there was a looming fear of recurrence of the cancer. I sat down with my doctor and learned about the unsettling truth; the risk of recurrence persisted even after completing the initial treatment. I opted for a unilateral mastectomy—the surgical removal of the breast.

“It was a practical decision for me, as I had no aspirations for breastfeeding or marriage. The surgery took place at Nairobi West Hospital, and to my surprise, I remained untroubled by the decision.

“My son, on the other hand, was deeply concerned. He would show me images from search engines like Google, depicting how I would look after the mastectomy. He dreams of becoming a doctor.

“He tells me, ‘Mum, once I become a doctor, I'll ensure you have breast reconstruction surgery.’ I tell him, surely, I will be too old for that.

“When you are a single parent going through such, you will worry about your children. Who will do the household chores? Cook for them? This was concerning but thankfully, my cousin rallied our family to help me relocate from Nakuru to Nairobi. He found a school for my son and even covered his educational expenses. We were raised together with my cousin and we've remained present in each other’s lives.

Pillar of strength

“He has been my pillar of strength throughout this journey, and I am surrounded by a loving circle of relatives who continue to provide support and encouragement. I receive a monthly stipend from my late husband’s employer, which has become a lifeline since my omena business was crippled by the onset of breast cancer.

“As my ongoing treatment progressed, I received advice against using prosthetics (artificial beasts), primarily because they could disrupt the healing process. This directive came with certain adjustments, as I noticed that my clothes didn't quite fit the same way they used to.

“At first, it was discomforting but I got used to it. Once I've healed completely, I plan to wear a prosthetic bra, which will help restore a sense of balance and normalcy. Interestingly, if I didn’t tell you about my story, you wouldn’t know about my battle with cancer. Whenever I go to the village, some are astonished by my resilience and good health. I think being positive about the journey and the unwavering support from my family has helped.

“I attend regular meetings at the Nairobi Hospice with fellow cancer survivors, where we share our knowledge about breast cancer and empower each other to inspire those who are just beginning this challenging journey.

“I am a stage 3 breast cancer survivor and find inspiration in the stories of others who have defied the odds, even in the face of stage 4 cancer. Their resilience has become beacons of hope. I hope to resume my business in the near future.”

*Name changed to protect the woman's identity.

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