Error that cost me my breast

Even though the evidence was right there in front of her, her brain stubbornly refused to register the fact that she had just lost one of her breasts.

For 21-year-old Josephine Muthoni, losing such an intimate part of her body was a frightening prospect that she just could not fathom how she could continue living.

“It felt like a part of me had just died, and I wished that the rest of me would die too so that I wouldn’t have to face the reality of living with one breast,” recalls Josephine, then a second year medical student at Moi University, Eldoret.

She had just had a mastectomy, (surgical removal of one or both breasts) after doctors discovered a cancerous lump in her right breast.

Interestingly, Josephine had noticed the lump about a year-and-a-half earlier and out of concern, had consulted a doctor, who brushed it off as a benign tumour assuring her that she had nothing to worry about.

This allayed her fears, but only for a while because each time she felt her breast, the lump seemed to be getting bigger. When she could no longer ignore the fear that kept resurfacing, she decided to consult another doctor, David Mathews, a visiting American medic who was then teaching at Moi Teaching and Referral Hospital.

After feeling the lump, he recommended an immediate mammogram, but the only hospital with a mammogram machine then was Kenyatta National Hospital, and it had broken down. The only other option was to have the lump surgically excised and studied by a pathologist to determine whether it was cancerous or not.

The following day, Josephine had minor surgery to remove the lump. A week later, the results were out. “I tried not to be worried about the outcome of the results, and hoped that the tumour was harmless when I walked into Dr. Mathews’ office to pick the results,” says Josephine.

But when she walked out a few minutes later, she was shattered. The doctor’s words still ring clear as if they were uttered yesterday – “There are no two ways of saying this...the lump is cancerous…”

To eliminate any doubt, several pieces of the tumour had been sent to different pathologists for analysis, and they had all given a similar verdict. There was only one course of action - surgical removal of her right breast, as well as the surrounding lymph nodes.

“I was numb, I just couldn’t believe what I was hearing, it sounded so unreal. How could I have cancer? I was only 21 after all...,” she trails off.

After the surgery, she took a month off school to recuperate in her parents’ home in Nyahururu, Central Kenya. “Everything had happened so fast, that I barely had time to process what was happening to me…one minute I had a lump in my breast, the other I had no breast. That month was one of the most trying periods of my life.” She was convinced that she would die, and even contemplated quitting university.

“I did not know much about breast cancer, or any other cancer for that matter. But I knew that it was a terminal disease and that meant only one thing: I would die. I did not see the point of studying if I was about to die anyway,” she says.

Her father had absorbed the news with characteristic calmness, telling her that a breast “isn’t that important” while her mother had quickly offered her daughter all the support she needed.

However, not even her parents’ reassurance was enough to take away the gloom that had suddenly descended upon her.

Though she eventually agreed to resume her studies, it took her a while to muster the enthusiasm to learn once again. “I sat through classes like a zombie; unable to concentrate on anything I was being taught. When that semester came to a close, I wasn’t surprised to be at the bottom of the performance list.”

The fact that her then boyfriend had ended their relationship when he learnt about her surgery was also weighing her down. He ‘couldn’t deal with what had happened’ so he called it quits.

“At that point, I believed that no man would ever want a woman like me, a woman with one breast, and each time I looked at my reflection in the mirror, I was convinced that I would spend the rest of my life alone. I had lost the will to live.”

The realisation that her clothes just didn’t ‘hang right’ anymore also gave her a lot of distress. Initially, she would stuff her bra to give her bosom a uniform appearance, but the stuffing would keep shifting and would sometimes fall out, something that embarrassed her a great deal. In frustration, she gave up trying to look ‘normal’ and threw the stuffing away.

Soon after, some female teachers approached her and informed her that she was making other people uncomfortable. Why had she stopped wearing the provisional prosthesis?

“I was hurt, angry and embarrassed. Didn’t my comfort matter? Didn’t my feelings matter? I mean, I was the one who had lost a breast,” Josephine recalls, tears clouding her eyes at the painful memory.

A few years later, she would discover that many other women who have had a mastectomy, have similar and in some cases, worse stories to tell.

While dealing with all this, she took another blow - the cancer that had been detected in the lump had not spread to her breast, meaning that the surgery she had undergone was not necessary at all.

“It was hard news to swallow, but I knew that my doctor had acted in good faith, using the limited diagnostic tools that were available then. After some soul-searching, I concluded that I was better off losing a breast than dying prematurely,” she says simply.

It is also at this point that she finally decided to give life the best shot she had. She made up her mind to concentrate on her studies, pass her exams and become a doctor just like she had always wanted to, instead of waiting to die.

By the time Tony Njoka, her 33-year-old husband came into her life; Josephine was once again a confident, out-going and self-assured young woman. “He is the man who saw past my scar and loved me the way I was,” says Josephine, giving the father of her four children a tender smile.

The two met in 2001, when Njoka, a fourth year medical student at the University of Nairobi’s medical school was posted to Moi Teaching and Referral Hospital as an intern.

Says Njoka: “Until she pointed it out, I hadn’t noticed that anything was amiss. I had met several patients who had had a mastectomy in the course of my studies, but since our relationship was a detached one, I never really thought much about it,” he says, admitting that though he was taken aback at the news, he was not put-off.

As he explains, he was already attracted to Josephine and knew that she was the woman he wanted to spend the rest of his life with.

The couple eventually got married in 2004, the same year that Josephine was posted to Kenyatta National Hospital and Njoka to Tenwek Hospital in Bomet. When Josephine got pregnant with their first child, she worried whether she would have enough breast milk to keep him nourished and satisfied. What she did not know was that the real test would come when she gave birth to their twin daughters Maria and Terry two years later.

“Try feeding two hungry babies on one breast – it is near impossible, but thank God children grow fast and eventually outgrow breast milk,” says Josephine, who supplemented breast milk with formula. The couple has been married for five years now, and though Njoka still works in Bomet, and Josephine in Nairobi, they say their marriage grows stronger with each passing day.

“We ensure that the time we spend together counts because we’re apart most of the time,” comments Njoka.

Between their demanding jobs as doctors and raising four young children, this couple surprisingly manages to squeeze in study time. Njoka is studying for a Master’s degree in Family Medicine at Moi University while Josephine is pursuing a Master’s degree in Pathology at the University of Nairobi.

Says Josephine: “My experience got me interested in the field of diagnosis. In medicine, proper and timely diagnosis could make the difference between life and death. I want to be in a position to save as many lives as possible and help patients make an informed decision concerning their health.”

Josephine is not lost to the fact that many Kenyan women are dying from this manageable disease – and it makes her angry.

“Breast cancer is the most prevalent type of disease among Kenyan women, yet it doesn’t receive the attention it deserves. Everyday, women die needlessly from a disease that can be effectively managed because they can’t afford the high treatment cost,” she points out.

She observes that while support groups are important, (she is in one) a woman battling breast cancer needs much more than group therapy to fight the illness.

To fight the illness effectively, she feels that breast cancer patients should get the kind of support that say, HIV/AIDS patients get – the cost of managing the disease should be subsidised at all health institutions and so should the cost of reconstructive surgery.

Also, prosthesis, which are not readily available in all parts of the country, should not only be within the reach of every woman who needs them, but also affordable, if not free, while there should be feeding programmes for needy cases since a healthy diet plays an important role in managing the disease.

In the meantime, she advises all women, regardless of age, to check their breasts regularly because this is the only way to make an early diagnosis and start successful treatment.

“Chances of having breast cancer are very high and as long as you have breasts, you should check them for lumps at least once a month and take advantage of the free breast screening services that some hospitals offer.”

Seeking a second opinion is also important. “Doctors are human and they can make mistakes; therefore, seek a second or even third opinion just to be sure that your doctor has the right diagnosis.”

[email protected]