Rubina Akeel, 44, is a survivor, albeit one still plagued by a few scars and a few regrets. “I could see my life slipping away from me,” says this mother of two who was only 38 when she fought ovarian cancer – her own mother had succumbed to the disease, while her two aunts are breast cancer survivors.
It was during the time she was preparing for her ovarian mastectomy that her doctor suggested she remove her breasts, as well, because of a “faulty gene”. She refused. A year later, when breast cancer made a vengeful appearance, Rubina regretted that very decision.
“The faces of my children swam in front of me … I felt that they would lose me, this time for sure,” she says, her voice trembling slightly.
In the surgery that ensued after the diagnosis, Rubina bravely got removed her affected breast and the healthy one.
Rubina is among the small but growing number of women in Pakistan who appreciate, and relate to, American actress Angelina Jolie’s actions to “protect” herself from cancer.
From February through April 2013, Jolie underwent several surgeries to remove both her breasts – known as bilateral preventative mastectomy – and replace them with implants, after she was diagnosed positive for BRCA1/2, a gene that, if mutated, can cause breast or ovarian cancer. After her surgeries, her 85% risk of getting breast cancer was reduced to less than 5%. According to official reports, she will also remove her ovaries soon.
While Jolie’s bilateral mastectomy stirred a fiery debate about the need and implication of preventive surgery, Pakistani doctors believe that there’s a long way to go before Pakistani women carrying the mutated BRCA1/2 gene can make such bold, independent decisions.
Every year, Pakistan loses at least 40,000 women to breast cancer. The current ratio of mortality rate due to breast cancer stands at 1 in 9. According to experts, the disease is more dangerous since it is directly connected to ovarian cancer.
Dr Rufina Soomro of the Liaquat National Hospital in Karachi says this link is mainly because of the mutated gene. According to her, only 1% to 2% of women would opt for breast removal. “It is not just one person’s decision. It is the entire family’s decision and requires a lot of psychological counseling,” she says.
“It’s not that a patient walks in and says she wants her breasts removed, simply on speculation that she may get breast cancer just because her mother or grandmother had it,” explains Dr Neelum Siddiqui, head of medical oncology at Shaukat Khanum Memorial Cancer and Research Hospital, Lahore. “Mastectomy is a tough decision to make, and reconstruction is even tougher.”
Therefore, doctors greatly stress the need for analysing a patient’s detailed genetic history and individual medical history first. A patient’s data is fed into an online system to calculate her risk of getting breast cancer. If the percentage is more than 10%, the patient is advised mastectomy. “Advised, not forced,” emphasizes Dr Siddiqui.
According to Dr Siddiqui, an affected woman does not transfer the mutated gene to all her children. However, what is more worrisome is that 80% to 85% of the cases are not hereditary, and the main cause is still unknown. Doctors point towards infertility, late first child birth, avoiding breast feeding, smoking and drinking.
The multi-phase testing costs around Rs300,000, while reconstruction costs another Rs350,000 -Rs400,000. Keeping this in mind, experts believe the easiest way of early detection is one that is free: self examination.
“Regular screening, including self-examination every month and a mammogram every year, is important,” says Pink Ribbon Pakistan CEO Omer Aftab, whose organization has been operating a mobile, nation-wide screening programme for three years.
According to Aftab, women are reluctant to get examined as breast cancer is still a social stigma. They fear “staining” other women of their family, driving away prospective marriage proposals for their daughters and sisters.
And yet, Aftab is optimistic. He says people are slowly, but surely, learning about preventive measures. The import of camera films used in mammography machines has increased by 400% over the last five years. “Patients seeking tests now need to secure appointments at least a week beforehand,” he says, smiling.
Published in The Express Tribune, June 27th, 2013.
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