Cancer prevention: To remove or not to remove

Social stigma and expenses make preventive mastectomy an unlikely option.


Ayesha Hasan June 27, 2013
Social stigma and expenses make preventive mastectomy an unlikely option. PHOTO: FILE

LAHORE:


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.

Hollywood helper

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.

Staggering statistics

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.

Genetic testing

“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.

Early detection

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.

COMMENTS (2)

mohsin | 8 years ago | Reply

Well getting awareness is very essential but this jolie's episode will escalate a whole new 'fashion-quo' which is the last thing we need at this moment. I feel eempathic towards respected females and I knoe I cannot even conceive the idea what they have to go throw as breasts are something for them as an identity of feminism. My major concern about this whole thing is removal of them just because a female assumes she will be diagnosed with it. And niw the next step which is explained removal of overies is itself alarming situation it shows where our society is going. People are so afraid of death that they just will go to any extreme. What they dont know is God plans are bigger and better. Stay healthy and eat healthy. Be blessed. @ayesha I like your article and the amount of research you have put in shows. Always love your way of writting. Cheers

Doc | 8 years ago | Reply

I would appreciate if the writer could give the % chance of somebody getting a breast cancer with a mutated BRCA1/2 gene and I feel she is taking this whole business of bilateral preventive mastectomy very casually, this is a very radical procedure and there are still question marks over its adoption on a large scale..just because Angelina Jolie has had it, does not mean everyone ought to have it..I the end I would like to ask what is an 'ovarian mastectomy' because I never heard of it

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