Rare cancers that come with unique challenges

As Kenya struggles to tame deaths from common cancers such as that of the breast, prostate, lymph nodes, rectum, cervix and oesophagus, the burden is growing as the rare ones remain undiagnosed at early stages.

Dr Catherine Nyongesa, a radiation oncologist at Kenyatta National Hospital (KNH) says delay in diagnosis due to low index of suspicion, lack of equipment such as PET scan machine and ill-trained personnel are big hindrances to detecting and recording rare cancers early.

Some of the rare cancers that are becoming a burden and which are easily being misdiagnosed or ignored include anal, brain and testicular.

“Choriocarcinoma, for instance, occurs in women’s uterus after a pregnancy goes wrong. Symptoms can include vaginal bleeding, which may appear common after delivery and often goes undiagnosed,” Dr Nyongesa, who is also the chief executive of Texas Cancer Centre said.

Cancer, which is the third biggest killer disease in the country (after pneumonia and malaria), attacks each part of the body.

Endometrial cancer

For instance, Florence Macharia, 72, who is a retired nurse is one of the lucky survivors who has just completed treatment for endometrial cancer. Last year, the mother-of-four was diagnosed with the uncommon cancer which starts in the uterus. It is sometimes called uterine cancer.

Florence was diagnosed with endometrial cancer last February and by October the same year, she was declared cancer-free by oncologists at Fortis Hospital in India.

“I started spotting (vaginal bleeding) in February last year and being a retired nurse I knew I wasn’t supposed to at my age,” she says.

“My gynaecologist performed a pap smear test (a screening procedure for cervical cancer) on me and when nothing showed I was compelled to undergo a total hysterectomy surgery where all parts of the uterus are removed. That is when it was confirmed that I had endometrial cancer stage three.”.

Dr Nyongesa says: “If endometrial cancer is discovered early, removing the uterus surgically often cures it.”

Vulvar cancer

Vulvar cancer is relatively uncommon but it is contributing to deaths of women; most who die in shame because it is considered taboo to talk about reproductive organs.

The cancer which is linked to human papillomavirus (HPV)—the sexually transmitted virus that causes cervical cancer is common among women who have HIV.

Kaposi sarcoma, which one is one of the most common cancers in Kenya, is also linked to HIV. Women living with HIV are at a higher risk of developing vulvar, cervical cancer and Kaposi sarcoma.

Nelson Otwoma, the director of the Network of People Living with HIV and Aids in Kenya (Nephak) said at ‘‘any given time, 30 per cent of women and girls who die of HIV is because of cervical cancer.’’

Anal cancer

Dr Nyongesa said anal cancer may follow after chronic anal sex and it is prudent to seek medical attention once symptoms start to show.

In the case of anal cancer; rectal itching, abnormal discharge, narrowing of stool or other changes in bowel movements should be cause for alarm. Cancer of the anus occurs both in women and men.

‘‘Other common symptoms include a lump or mass at the anal opening, pain or a feeling of fullness in the anal area and swollen lymph nodes in the anal or groin areas,’’ she said.

Testicular cancer

There are a number of Kenyan men with testicular cancer, but Dr Nyongesa said it is one of the “good cancers” because it is curable.

“There are good cancers and bad cancers, those that respond well to treatment and those that don’t,” said Dr Nyongesa.

This cancer presents itself from the onset as a painless lump or swelling in either testicle, a change in how the testicle feels and a dull ache in the lower abdomen or the groin.

A sudden build-up of fluid in the scrotum and pain or discomfort in a testicle or in the scrotum should also raise the red flag.

Brain cancer

Brain cancer occurs in both sexes. The general signs and symptoms caused by brain tumors may include but not limited to; new onset or change in pattern of headaches, headaches that gradually become more frequent and more severe, unexplained nausea or vomiting.
Vision problems, such as blurred vision, double vision or loss of peripheral vision should be cause for worry.

Challenges

But as rare cancers become a public health problem in Kenya and also in Africa, Deborah Modi, the Kenya Cancer Association (Kencasa) chief executive, said the bet lies in early detection and creating awareness.

“Unlike common cancers like breast, where one can easily see symptoms or even do a self-examination on the breasts, with rare cancers many patients may not know or detect symptoms. This makes patients go to hospitals when these cancers are at advanced stages.