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'The bad disease'
Published in Al-Ahram Weekly on 25 - 07 - 2002

Keeping a disease nameless can be deadly. Amira El-Noshokaty peers through the veils of silence surrounding breast cancer in Egypt
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"Can't this letter be more vague, doctor?" asked the puzzled man. He was referring to a letter from the hospital addressing his wife's office. "It says here that she has breast cancer and lots of people are going to read this. Can't we just say that she is sick and needs a less tiring job?"
In a society that considers cancer a curse, people are wary of mentioning the disease by name. Consequently cancer is referred to as "the bad disease".
Hence, another woman is doomed following the discovery of a tumor extending from her breast up to her throat. "Her husband refused to let her see a doctor, justifying this by saying that if she was well enough to do all of the housework, she was well enough to do without a doctor," explained the physician currently treating the woman. Thanks to her husband, she was diagnosed with cancer when the disease had reached an advanced stage. One breast cancer survivor explained, "Egyptian women can endure almost anything, and they don't come forward unless they feel really terrible." Such concepts of "strength" are popular among women between the ages 35 and 65, most of whom are married with children. For some men, acknowledging their wife's illness is equivalent to admitting that she is "defective". And while women may boast of their ability to withstand physical pain, there is the psychological pain that the stigma of cancer entails. The widely held misconception that cancer is contagious only attenuates this suffering and has even spelt divorce for some women. Moreover, if a young woman is diagnosed with breast cancer, she automatically becomes unmarriageable.
Dr Mohamed Shaalan, professor of surgery at the National Cancer Institute, told Al-Ahram Weekly that he is often asked -- even by middle-class patients -- whether cancer is contagious. "I have seen breast cancer patients divorced simply because the husband was afraid that his wife might infect him and their children," recounted Shaalan. "It is very difficult to address such fears about the disease when people are unable to even utter its name. Even today it is referred to as the 'bad' or 'cursed' disease. The 'C' word is taboo. There are no support groups for patients and there is no psychological support whatsoever."
Such is the status of awareness and support for a disease that affects one in 10 women worldwide. However, treatment and support in other parts of the world leave much to be desired. Australian feminist Germaine Greer wrote in her book The Whole Woman, "While the sum total of trauma and anxiety has soared, the number of deaths from breast cancer has only slightly fallen. In Britain there were 15,180 deaths from breast cancer in 1990; by 1995, after five years of mass screening, the number had fallen no further than to 14,080 -- a decline of three per cent, while the diagnoses had sky- rocketed." Greer goes on to point out, "Though women are terrorised by the constant evocation of the spectre of breast cancer, they are never put in possession of the facts."
In Egypt there are no nationwide statistics for the incidence of the disease. The International Agency for Research on Cancer (IARC), an organisation that comes under the umbrella of the World Health Organisation (WHO), estimated that the number of Egyptian women who died from breast cancer in the year 2000 was 3,184. And yet, according to statistics from the National Cancer Institute (NCI), 18.9 per cent of those afflicted with cancer who registered with the organisation had breast cancer, that is 1,998 persons. Among the women with breast cancer who registered with NCI, 2.2 per cent were under the age of 18.
The path to diagnosis can be a long one. A 54-year- old woman told the Weekly her story on condition of anonymity. Two years ago, physicians at the Italian Hospital discovered lumps in one of the woman's breasts in the course of performing a manual breast examination within the framework of the Cairo Breast Screening Trial -- an initiative that the hospital is conducting in collaboration with the Ministry of Health. "They suggested I have a mammogram, but instead I sought a second and third opinion. Both of those said the tumor was benign." Following the removal of the tumor, the woman began to experience more pain than she had suffered previously. "One year later I was experiencing intense pain and returned to the Italian Hospital for a checkup. It was cancer all along, and because I had waited, doctors had to remove the whole breast and I had extensive dosages of chemo and radio- therapy."
The woman's gynecologist had never mentioned breast cancer, never suggested that regular breast exams were important. But then again, the last time she visited her gynecologist was when she was pregnant, some 24 years earlier.
The Cairo Breast Cancer Screening Trial was launched in 2000 by the Italian Hospital in Cairo's Abbasiya district, where the hospital is located. The project's objective is to reduce the mortality rate for breast tumors in Egypt by raising awareness about the importance of early diagnosis through self examination, mammograms and limited surgery.
Dr Salwa Boulos, the project's principle investigator and medical consultant, spoke about the first stages of the study. "Three random field areas were selected. Social workers took questionnaires and went from door to door. We targeted women between the ages of 35 and 65 and suggested relevant breast exams." Questionnaires dealt with a woman's medical history towards assessing her risk. Social workers gave respondents cards with serial numbers for free check-ups and in the event that lumps were found, patients were referred for a mammography. If surgery were required, it, along with follow-up treatment, was provided free of charge.
But the real challenge proved to be convincing women to accept the advice and treatment. One 60-year-old woman recounted her experience with the programme: "They [the social workers] came to our door and spoke in a friendly, simple manner and promised us a jar of honey as a gift if we went and had a breast exam." The woman was diagnosed with breast cancer one year ago; she proved responsive to treatment and is now enjoying a new lease on life.
The project is unique in that it is the first in the country to tackle breast cancer head on. "Throughout our first phase, which lasted for six months, we spoke to 5,000 women. Eighty-three per cent agreed to participate in the project. However, only 60 per cent of the 5,000 women actually showed up," said Boulos. "Among those referred for a mammogram, 20 cases of breast cancer were identified, four of them were at an advanced stage," said Boulos.
"I teach all my patients aged 30 or older about breast self- examination," Dr Fathia Qandil, a gynecologist, told the Weekly. "I teach them how to divide the breast into four equal parts and to focus on the under arm," she added.
Qandil's approach comes within the framework of increasing awareness in Egypt about the need to openly address the issue of breast cancer. Breast Cancer Awareness is a pink brochure that includes a list of commonly asked facts and questions about the disease and includes illustrations about conducting a breast self-examination. The brochure is sponsored by the Association of the Friends of the National Cancer Institute (AFNCI) and the Wellness Committee of the Embassy of the United States of America.
"An integral part of our breast cancer awareness campaign was the dissemination of 10,000 copies of the brochure in English and Arabic," said Louis Crooks, a breast cancer survivor and a former nurse who specialised in the care of cancer patients and currently an adviser to NCI.
Crooks has trained nurses in the cancer units of hospitals in the Upper Egyptian governorates of Aswan, Minya and Sohag. When operations in those areas are necessary, surgeons travel from Cairo to perform them, making long arduous journeys to hospitals that are often far from airports. "The hospitals there are in a difficult situation -- nurses come up with questions like: 'can we catch cancer from our patients?'" explained Crooks. Such questions come within the context of the practice of a profession in which an important part is providing emotional support to patients. From the little we know of the incidence of breast cancer in Egypt, it seems that the majority of those afflicted with the disease are poor, and many of those patients are illiterate as well. In an attempt to target this specific group of patients, there are plans to establish the Breast Cancer Centre, a project that would be financed primarily by a fund overseen by the Canadian ambassador, within the Nasser Medical Institute.
"Not only are there cultural barriers," stated Crooks, "But nobody asks their doctor the necessary questions. Patients expect their doctors to make decisions for them."
Shaalan, who is on the board of the National Cancer Committee which is involved in establishing the Breast Cancer Centre, also highlighted the need for institutions to enhance awareness and support patients. "In this country, there are no cancer centres; there are no support groups, there is no psychological approach to the patient and his family. People here believe it is a death sentence. But women can be cured and they can go on with their lives."
While Crooks has moved on with her life, she well remembers the difficulty of undergoing treatment. "Being set up for radiation on a flat hard X-ray machine is tough. They have to mark you and it's very uncomfortable and the radiation takes 15 minutes. Everybody leaves the room; everybody is protected but you. Sometimes the treatment is worse than the disease. I thought that I was going to die within a few months. But I have survived for 13 years."


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