Women urged to fight breast cancer stigma

“When I found out I had breast cancer, I cried for two hours and then I went home and got on with it,” says Randa Milhem, from her home in Amman. The 36-year-old Palestinian mother of six told Al Jazeera that she first discovered a ball under her shoulder, just above her breast, when she was breastfeeding her twins.

After a second lump appeared, she demanded doctors do a mammogram. “It was only then that I discovered I had cancer. Until now, I don’t know what stage I was when I was diagnosed, but it wasn’t early,” she said.

Milhem, who has been in remission for five years, is one of 900 women in Jordan who are diagnosed with breast cancer annually, making it the most common cancer among women in the country. In neighbouring Lebanon, the numbers are significantly higher, with approximately 1,750 women being diagnosed each year, or about five per day.

The Middle East tends to have younger sufferers of breast cancer in comparison to the rest of the world. In Lebanon, for example, 50 percent of breast cancer patients are below the age of 50 – this compares to 25 percent in the United States and Europe.

Breast cancer rates in the Middle East are actually lower than in the western world. Most recent statistics show that in 2012, there were 99,000 cases of breast cancer reported across the Middle East, North Africa, and parts of Central Asia combined, whereas the European Union had 367,000 cases, and the US, 1,677,000.

Nevertheless, mortality rates in the Arab world are much higher. According to the World Health Organisation, this is because the region lacks a culture of regular breast cancer screening and therefore, early detection of the disease.

The result is that many cases of breast cancer are presented to medical professionals at a late, and usually critical, stage. Remarkably in Jordan, 70 percent of breast cancer cases are first presented at advanced stages.

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A lack of regular breast screening in Lebanon and Jordan is a result of various social and economical factors. However, misinformation and fear seem to play a big role.

“Women need to know about the importance of early detection,” says Dr Nagi El Saghir, oncologist and director at Beirut’s Breast Center of Excellence. “It can save their lives. When you detect the disease early, it’s significantly easier to treat but women in this region are waiting too long.”

“In our culture, as in many Arab countries, cancer means death,” El Saghir added, “but we are trying to tell women that it does not have to be that way. If a woman feels a lump in her breast, and she consults a doctor straight away, it’s likely she will be cured … but people are afraid, and it’s a huge reason why women are not coming forward sooner.”

Despite growing awareness campaigns in the region, there still exists a culture of shame and silence surrounding breast cancer. This is especially prominent in rural communities where women who suffer from the disease fear being ostracised by their families.

“There is a stigma attached to the illness here in Jordan,” says Suzan Murad, director of the Al-Wa’ad Society for Cancer Advocacy & Survivorship in Amman. “Women are terrified of the possibility of a mastectomy and what outcomes this could have, many worry that their husbands will leave them.”

Similarly in Lebanon, a culture of silence is still prevalent. “There is a taboo when talking about it,” says Rima Dandachi, Founder of the May Jallad Foundation in Beirut. “Sadly, some women are ashamed. I will never forget, one patient I met with told me her mother did not know about her illness. Can you imagine? She lost her hair, she went through an operation, and her mother didn’t know? It’s fear, maybe they think if they don’t mention it, it won’t be there.”

However, some feel it is the not the disease itself, but the physical change it causes that women are most afraid of. “Women feel ashamed when their hair falls out, they forget about the sickness and just think how can I be in front of my husband and kids like this, it’s a fear of not fitting in,” says breast cancer survivor Milhem.

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While both the Lebanese and Jordanian governments have programmes that fund aspects of cancer care, the expensive cost that develops over the long course of treatment is another concern for women.

Lebanon’s Ministry of Health will pay for up to 85 percent of treatment costs, but this still leaves families having to cover the remainder, which can be incredibly high. Moreover, regional instability and an influx of displaced people into Lebanon and Jordan have put immense pressure on the countries’ healthcare systems.

“The cost is horrible, for all kinds of cancer,” says Dandachi. “Honestly, when I see patients’ bills, I get scared. I don’t know how families can pay for it.”

She added that the system has been particularly strained due to the influx of Syrian and Iraqi refugees coming into Lebanon. “My organisation alone has had so many Syrian and Iraqi women coming to us for breast cancer treatment and help, because they cannot get it in their own countries.”

Despite these challenges, many say that awareness campaigns are having a positive impact in the region. Every October, for example, Jordan and Lebanon run workshops to teach women about the importance of self- and clinical examinations.

“The results are amazing,” says Dr El Saghir. “We have seen great improvements over the past 10 years, but we’ve still got a long way to go.”