Beyond ‘Cut, Burn and Poison’

I’ve made the decision to have the surgery sooner rather than later. Every day, I’d think, I’ve only got a few hours left till they finally cut me off. I cannot help but wonder: when all of this is over — will he still want me?

Maheen was 25 years old and ready to tie the knot — the picture of happiness, well-being, and high spirits. Standing next to the groom in the wedding hall, she once again felt butterflies in her stomach, reminding her of the fluttering feeling she had when she first saw him. Her emotions ran high and the stress of having the perfect wedding was overwhelming. All the arrangements were carefully done, and the guests were pouring in.

However, in a cruel twist of fate, her wedding day soon became her worst nightmare. A third tap on the shoulder yanked Maheen from her reverie. She turned around and saw her mother’s worried eyes. She took her by the hand to the dressing room — which was less than 20 paces away, but felt like a mile. With each step she took, Maheen thought of a different possibility of what could go wrong. Despite the growing dread in her stomach, she could not fathom what she heard next.

Ten days earlier, during a medical exam at Liaquat National Hospital, Maheen pointed out a lump she noticed in her left breast. Now, dressed in her wedding finery and seated on a sofa in the dressing room, she listened to her mother break the news to her: Maheen was diagnosed with stage 1 breast cancer.

She felt heavy, suddenly, as if she was “filled with lead and fixed to the floor”. Her first thought was to call off the wedding: “I felt guilty that my husband was getting less than he should.” The remainder of the wedding took place in silence.

The wait for the surgeon’s appointment was the worst. Maheen cowered at the thought of undergoing a radical mastectomy and living without her breast for the rest of her life. Finally, on that cold evening in December 2010, the surgeon sat down to brief her about her condition.

“You are not going to die from this,” she reassured her. “It’s a tiny tumour and very responsive to treatment. You have the option to conserve your breast (lumpectomy), but a mastectomy would eliminate all chances of the cancer’s return.” Maheen opted for a lumpectomy.

According to the Journal of Pakistan Medical Association, Pakistan has the highest rate of breast cancer in Asia. In the absence of a cancer registry system, Pink Ribbon Pakistan – an advocacy group which aims to build the country’s first breast cancer hospital in Lahore – estimates that an average of 90,000 breast cancer cases are diagnosed every year, and over 40,000 deaths are caused by it.

“At Aga Khan University Hospital (AKUH) alone, we see about 400-500 breast cancer patients every year,” says Dr Munira Shabbir Moosajee, an oncologist at AKUH. “Almost one in every eight women suffers from the disease. However, if diagnosed in the early stages, there is almost a 90 per cent chance of survival.”

One major decision patients have to make in early stage breast cancer is whether to have a lumpectomy or mastectomy. In some cases, a lumpectomy, also known as breast-conserving surgery, is enough to render the patients disease-free. In other, more advanced stages of breast cancer, patients have no choice but to get a single or double mastectomy.

Moosajee explains that in early stage breast cancer, opting for a lumpectomy may affect the risk of the cancer’s return. “This is also known as a local recurrence, the return of cancer to the breast, chest wall, or lymph nodes after treatment.” She adds that most local recurrences occur within five years of the first diagnosis.

For Maheen, the most difficult time of her life was facing the return of the cancer during her first pregnancy. Just a few weeks before her delivery, she pointed out a painful lump in the same breast. She reminded herself that breast changes during pregnancy were normal, but still had a nagging worry at the back of her mind. She felt twice as heavy when she saw the ultrasound report: the cancer had returned — and this time, a mastectomy was strongly advised.

Despite her strength and resolve, she was faced with a tough decision once again. The thought of losing her breast was “almost like the pain of heartbreak”. Despite reassurances from her husband, she could not imagine what her life would be like after the surgery, but she was certain that it would not be the same.

Shopping for clothes, post-surgery, has been particularly difficult. When she walks through a lingerie department, she feels angry and out of place. “There was a time I used to enjoy shopping. Now, I’m reminded of my scars and disfigured breasts every time I look at the double-breasted garments.”

“The surgery changed the way I perceived myself, with regard to my relationship with others. For a while, I felt I was no longer a good wife to my husband or a good mother to my child. I couldn’t breastfeed my first born. I struggled to even feel like a woman.”

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Throughout history, the female breast has served an iconic responsibility: a visual representation of the feminine form, sexuality and fertility.

According to Dr Samaiya Mushtaq – a psychiatry resident based in Dallas, Texas – “Society often values a woman based on appearance alone, which is proxy of her ability to arouse a man.”

“Culturally, breasts remain almost exclusively a symbol of feminine sexuality. Even public breastfeeding, despite being the most natural use of the female breast, continues to remain controversial,” Mushtaq adds. A woman may learn to distinguish her femininity with her breasts, even when covered. “The loss of a visible sexual symbol could directly result in significant detrimental effects on her self-esteem.”

Dr Safieh Shah – a scientific researcher with an interest in gender dynamics – agrees, adding that the loss of breasts affect women in “more ways than can be accounted for by medical science”. In modern capitalistic societies, the female form has been objectified to the extent that “breasts are regarded as ‘objects’ of their own accord, leading to a disconnect between the human individual that they are a part of and belong to.”

“Patriarchy dictates the female form,” Shah explains. “Since this has led to men controlling (via their stated sexual preferences) the demands of women, this has only led to further covert control of a female body’s appearance.” A woman’s concept of her own sexuality and ‘normality’ is dictated by what her ‘ideal’ image ought to be.

Additionally, in societies that place value on breastfeeding over formula feeding, the inability to do so can affect a woman’s conceptualisation of herself as an adequate mother. “Throughout history, breasts have been essential – not only in the visual depictions of female form, as they are integral to portraying femininity – but also as an indirect indicator of fertility. They have primarily been representative of sustaining life, providing for a baby when it is absolutely helpless. This has been the basis of certain roles taken on by women in society that have been the basis of human (and mammalian) life as we know it.”

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Dr Aneela Abbas, a psycho-oncologist at Indus Hospital, explains how the loss of breasts provokes feelings of loss, anger, anxiety, and an altered sense of identity — particularity in younger women. “They consider a mastectomy to be an attack on their innate feminine nature. They feel mutilated and self-conscious. They have a hard time coming to terms with their new bodies.”

In Abbas’ professional experience, middle-aged and elderly women are less anxious about losing their breast(s), compared to younger and unmarried women. For them, survival is foremost. “By the time women approach their mid-50s, breasts, sex, and one’s public image figure relatively less into their daily existence,” she says. “It is generally believed that married women fare better in coping with relationships after losing a breast, compared to single women.”

Sixty-year-old Shahida tells of her struggle with the disease. “The most harrowing part was losing my hair to chemotherapy,” she says. “The loss of my breast did not affect me as much as the loss of my hair. When I looked in the mirror, I no longer saw myself. I saw a cancer victim.”

Many women learn the meaning of emotional vulnerability after losing a breast. 55-year-old Salma describes some of her fears before and after going into surgery. “The first thing you think about is whether or not you’re going to survive,” she says nervously. “I wanted to fight this illness for my children. I wanted to be healthy again, so I could witness their happy moments.”

She recalled that for many months after her surgery, she would feel shy and self-conscious in public. What bothered her most was her husband and in-law’s outlook on her mastectomy: they considered the illness and its consequences a misfortune or ‘curse’ wished upon her by someone.

Additionally, the sole focus on a woman’s ability to survive, rather than how she ‘feels’ after her mastectomy, speaks to the fact that women are expected to flip a switch and return to their normal life once the surgery is over and chemotherapy done. There seems to be a certain amount of guilt involved when a breast cancer survivor says she misses her breasts.

“Sometimes, I feel like I’m not supposed to say this. In fact, I’m not even supposed to think it. I’m supposed to put on a mask and be grateful that I am alive: shouldn’t this be enough? But I miss my breasts that I gave up to this disease, and I always will.”

According to mental health experts, the brain responds to the loss of a body part as it does with any other loss. “Grief is an unfolding process that consists of five basic stages: denial, protest, disorientation, detachment, and resolution. However, there is no set way to move through the stages,” says Abbas. “In reality, it’s not as clean-cut. For some, the grieving period ends overnight. For others, it may last for several months and make appearances [even after that] from time to time.”

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Up until a few years ago, mastectomy was a taboo subject. Families used to speak about the surgery behind closed doors. During the mid-80s, women started speaking about what was long considered a shameful condition. The Pink Ribbon Campaign, launched in 1991, aimed to seek a sort of sisterhood among breast cancer patients. However, despite increasing awareness, many women still consider mastectomy an extremely undesirable outcome that disfigures them.

Some women prefer to not camouflage a missing breast, while others opt for reconstructive surgery using external prosthesis. Plastic surgeons have embraced cutting-edge techniques to give natural results. There are two major surgical procedures available to women who opt for breast reconstruction. One is complex flap surgery, in which doctors use tissues from elsewhere in the body to create the new breast; and the other is implant reconstruction, in which silicone implants are inserted in place of the missing breast.

However, in Pakistan, breast reconstruction is not as common as it is in the West, mainly because of the cost and the exhaustive surgical procedure involved. According to Dr Zara Yousafzai, a plastic surgeon at Liaquat National Hospital and Medical College, less than 10 per cent of women who get mastectomies elect to have reconstruction. The remaining patients cite financial or personal reasons for forgoing the procedure.

“The thought of another knife was too much to bear. My family and I have been through quite enough,” says 50-year-old Parveen, who underwent double mastectomy.

“I am happy that I survived and I wouldn’t opt for the procedure, even if it was less costly,” she says with a touch of amusement, as she adjusts her prosthetic bra and gets on with her work.

*Names of patients have been changed on their request