Fear and misinformation delayed Rebecca Kagoya’s breast cancer diagnosis and sent her searching for alternatives. Eight years after treatment, the 58-year-old head teacher is sharing her story to encourage others to seek medical care and support.
Rebecca Kagoya was dressing up in front of a mirror one morning in October 2016 when she noticed something different about her right breast. It appeared deformed towards the nipple and, when she examined it, she felt a lump.
At the time, Kagoya, now the head teacher of Luzira Church of Uganda Primary School, was a deputy head teacher and mother of seven. The discovery did not cause her much alarm. She went to school and continued with her normal duties, but the following day she went to Naguru Hospital to have the lump checked.
Upon examination, doctors advised her to go to Mulago National Referral Hospital for a biopsy, a test in which a small sample of tissue is examined to establish what is causing an abnormality. Although the doctors did not tell her they suspected cancer, Kagoya noticed them looking at each other suspiciously, which made her uneasy.
She called her mother and explained what the doctors had told her. Instead of encouraging her to have the biopsy, her mother warned her against it, having heard that people who were sent for the test usually had cancer and would die.
Her mother connected her to a herbalist in Mayuge, and for three weeks, Kagoya diligently took the herbs she was given, hoping the lump would disappear. It did not.
Although she was not experiencing pain, the persistent lump worried her. Eventually, she gathered the courage to return to Mulago Hospital for the biopsy, despite her mother’s opposition.
The diagnosis she feared
At Mulago, Kagoya paid Shs80,000 for the biopsy and returned about two weeks later for the results. She was told the findings were not clear and that another test was needed. This time, she did not have to pay, but she waited for about a month before receiving the results.
She had stage I breast cancer.
‘I was told I had to start treatment immediately,’ she says.
The diagnosis frightened Kagoya. She did not know anyone in her family who had had cancer, and, like many people who associate the disease with death, she immediately feared the worst.
Still frightened, Kagoya began looking for another way. She had heard about people treating cancer in Kyebando, a Kampala suburb, and went there hoping to find an alternative.
She was asked to pay Shs120,000, but she only had Shs80,000. Instead, she was given a list of foods she was supposed to eat and those to avoid. She was advised to replace sugar with honey, eat brown rice, yellow beans and yams, and avoid sweet fruits.
For a month, Kagoya severely restricted what she ate.
‘I would only eat yam and take water. I lost a lot of weight and felt I was going to die, so I went back to Mulago Hospital,’ she recalls.
At Mulago, she underwent further tests and was told the cancer had not affected her internal organs. She was referred to the Uganda Cancer Institute, where she began cancer treatment.
The reality of chemotherapy
Kagoya soon discovered that receiving treatment would be another difficult journey. One of the medicines she needed was not available at the hospital, so she was asked to buy it. She did not have enough money and called her brother, who came to her rescue.
At the treatment centre, Kagoya met other women who were also undergoing cancer treatment. One of them noticed her long hair and asked whether she had eaten. Kagoya had not, so she went out, bought an egg and quickly returned. Another woman gave her a bottle of water and a black polythene bag, although she did not understand at the time why they had insisted she eat.
‘I did not know the weight of the treatment process ahead of me,’ she says.
She would soon understand. She did not experience much discomfort during her first chemotherapy session, but after the second, she developed pain and a burning sensation. After the third, she became dizzy, and the bottle of water and polythene bag suddenly made sense as she began dealing with the side effects of treatment. The following day, after returning home, she collapsed in the bathroom while taking a bath.
A colleague helped her, but the effects continued. She developed sores in her mouth and became too weak to eat or walk. It was during this period that Kagoya began to appreciate how physically demanding cancer treatment could be.
After three rounds of chemotherapy, she lost her hair and sent someone to buy her a wig. But even the wig became part of the difficult experience.
‘There were times when it would get stuck when I was moving,’ she recalls.
One incident remains particularly vivid. Kagoya was travelling in a taxi when a woman sitting next to her had her baby with her. The baby reached out and pulled Kagoya’s wig off.
‘The woman screamed like she had seen a ghost,’ Kagoya recalls.
Kagoya had to explain to the passengers that she was undergoing cancer treatment.
Finding support
As the treatment continued, Kagoya found support from unexpected places. Her husband and mother were not supportive of her treatment, but one workmate stood by her. When Kagoya became slightly better, she told the head teacher about her illness and received support from colleagues.
Her workmate gave her books about cancer, helping her understand more about the side effects of the treatment.
After three rounds of chemotherapy, Kagoya underwent surgery to remove her breast on April 4, 2017. Her husband did not accompany her. Her son did.
‘My husband remained home doing a clean-up of the home as he waited for my body to be brought home. My mother still discouraged me from going for the surgery, saying I was going to die,’ she says.
Despite the fear and lack of support from some of the people closest to her, Kagoya continued with treatment. She later received radiotherapy in January 2018 and went on to take hormone therapy for five years.
Her workmate also introduced her to the Uganda Women’s Cancer Support Organisation (UWOCASO), where she met women who had survived cancer treatment.
For Kagoya, seeing these women was important because it challenged her belief that cancer automatically meant death.
Today, Kagoya is back at work and has lived for years beyond the diagnosis that once frightened her. Looking back, she says her decision to return to Mulago for the biopsy changed the course of her life. She now encourages women to seek medical attention when they notice unusual changes in their breasts and to follow through with recommended tests, even when fear or misinformation tells them otherwise.
Her message to young people
Today, Kagoya is 58 and is no longer receiving cancer treatment. She continues to attend medical reviews, but the experience has changed the way she views cancer and the importance of seeking appropriate care.
Her first decision to seek medical attention was delayed by fear and misinformation about biopsy. Her attempt to find an alternative treatment also left her severely weakened after she drastically restricted her diet.
Looking back, she wants other people facing cancer to learn from her experience and take professional medical advice seriously.
She also encourages people living with cancer to seek support from others who understand what they are going through, rather than facing the fear and uncertainty alone.