A Kenyan Journalist Writing About Health

Jacklyne Nekesa: “I Lost my Uterus to a Rare Form of Cancer”

By Maryanne Waweru-Wanyama

Five years ago, Jacklyne Nekesa Nyongesa had her uterus removed, in a surgical procedure known as a hysterectomy. She was aged 35 then and even though she did not wish to have her uterus removed, it was her only option if she needed to stay alive.

“Ever since I was a little girl, I always desired to have my own child, but nature did not seem to favour me in that way. I have now accepted the fact I will never give birth to my own child,” she says.

Jacklyne’s journey to having her uterus removed began in 1997 when, for a period of time, she experienced heavy bleeding accompanied by intense pain to the extent that she would pass out. With time, the bleeding became constant and would see her bleed every single day of the year. And it was not light bleeding, for she would bleed in huge clots.

“Pads would not help as the blood would sip right through them and onto my clothes. I always had to carry a change of two or three clothes in my handbag. I was studying at that time and it became difficult for me to move around as I had to constantly keep dashing into public toilets to change my soiled clothing. Eventually, I stopped going to college and preferred to stay indoors,” she recalls.

Selina Cimmone

Photo: Jacklyne Nekesa during the interview.

As the bleeding continued, it would be accompanied by feelings of nausea, vomiting and extreme fatigue. Jacklyne then decided to visit Kenyatta National Hospital where the doctors ran a series of tests on her, including a pregnancy test.

“The tests showed that my pregnancy hormones (hCG) were very high. This puzzled me because I knew for a fact I was not pregnant as I was not sexually active. An ultrasound later on showed that I had abnormal growths in my uterus. These growths were mimicking a pregnancy, hence the symptoms of a firsttrimester pregnancy,” she says.

The doctors further took tissue samples from Jacklyne’s uterus, which established the presence of cancerous cells along her uterine wall.

Jacklyne was diagnosed with an unusual type of cancer called choriocarcinoma. She had to undergo two surgeries in a span of six months to remove the abnormal growths, as well as undergo chemotherapy to destroy the tumour cells. She underwent a total of 15 cycles of chemotherapy.

However, the pain and bleeding never stopped, despite the two forms of treatment.

“As the years went by and the bleeding and pain got worse, the doctors recommended having my uterus removed, but I resisted this. I believed I would heal, meet a nice man, get married and have babies,” she says.

For the next decade, Jacklyne experienced heavy bleeding accompanied by intense pain everyday. Due to the loss of blood, she became anaemic and lost count of the number of times she underwent blood transfusions. The disease affected not only her physical and emotional health, but her social life too.

“I could not date. How could I be intimate with a man yet I bled every single day of my life?” she remembers. Finally, in 2009, Jacklyne gave in and heeded the doctor’s call to have her uterus removed.

“My cancer had started spreading to other parts of the body. A hysterectomy was the only solution if I wanted to stay alive. My dream of birthing my own babies had to come to an end,” she sadly remembers.

After the hysterectomy, the bleeding and pain stopped and for the first time in 12 years, she did not have to wear a pad or carry an extra set of clothes in her handbag. It has been five years since Jacklyne had her uterus removed. The 40-yearold is still single, but hopes to find love someday.

“Most men want a woman who can bear them children. I am yet to meet a man who doesn’t want that. Maybe I will find him someday. For now, I am considering adopting a child,” she says.

Today, Jacklyne volunteers at the Texas Cancer Centre in Hurlingham, Nairobi, where she interacts with cancer patients and survivors.

Choriocarcinoma, the kind of cancer that Jacklyne had is a rare form of cancer. In majority of the cases, choriocarcinoma develops from Gestational Trophoblastic Disease (GTD), a group of diseases that see abnormal cells grow inside the uterus after conception.

The most common type of GTD is a hydatidiform mole, which is a tumour that forms inside the uterus at the beginning of a pregnancy. It results from an abnormal production of the tissue that is supposed to develop into the placenta, and is also referred to as a molar pregnancy.

However, in a few cases, choriocarcinoma can come about as a result of non-trophoblastic disease, where it is not pregnancy-related. Such is the case of Jacklyne, who developed this form of malignant tumour yet she was not pregnant.

According to Dr Amin Medhat, a gynaecologist and oncologist in Nairobi, this kind of cancer can originate from ovaries in women, or the testes in men. The choriocarcinomas, which result from genetic damage to a germ cell, make human chorionic gonadotropin (hCG) which is a hormone found only in pregnancy.

Dr Catherine Nyongesa, an oncologist, says that patients who present with choriocarcinoma give a positive pregnancy test results.

“This type of cancer is the only one that can cause a man to have a positive pregnancy test result. This is because it originates from some primitive cells in the testes. Therefore, if a man feels some swellings in his testicles, it is recommended that he sees a doctor immediately,” she says.

It is also these abnormal cells that may have caused Jacklyne’s tests to indicate a high hCG level (pregnancy hormones), even though she was not pregnant.

The symptoms of choriocarcinoma depend on the origin of the tumour. In the uterus, the most common symptom is bleeding, while in the ovaries, it is characterised by abdominal pain. In the testes, the choriocarcinomas present as small painless lumps.

According to Dr Medhat, most cases of choriocarcinoma can be treated if the correct diagnosis is made and treatment sought early.

“Treatment for choriocarcinoma includes chemotherapy, though in persistent cases surgery is necessary. All choriocarcinoma patients must be closely monitored following treatment,” he says.

In Kenya, cancer is the third leading cause of death, with a reported 40,000 new cases each year, according to Dr Nyongesa.

“Prostrate and oesophagus cancer is the most common among men, while in women, breast and cervical cancer lead the pack,” she says.

Cancer diagnosis, treatment and management still remains a problem in Kenya. In November 27-29, the Kenya Society of Haematology and Oncology will hold a conference that is expected to discuss issues surrounding cancer research, prevention, treatment, rehabilitation and palliation in Kenya.

With cancer treatment costs being out of reach for most Kenyans, it is hoped that the government and other stakeholders will come up with innovative strategies that can work towards enabling and ensuring the cancer cases in Kenya are reduced through prevention, early diagnosis and treatment in local health facilities.

Article courtesy: The Star

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