Rebuilding a new life

Cecile Nel. (M&G)

Cecile Nel. (M&G)

I met Cecile Nel for the first time late last year. It was a Saturday afternoon, a warm summer's day in Johannesburg, at a friend's stork party. She was in her mid-20s and wearing a blue, floral dress with a visible cleavage. Every now and again she gently stroked her chest with her fingers, probably unknowingly. She looked excited, but relaxed—almost relieved.

Cecile and I had mutual friends, so I knew of her and what had happened to her. I had wondered about it, but I had never really delved into her experience. I greatly admired Cecile's courage, though, and grabbed a chair next to her—aware that she might feel uncomfortable talking about what must have been the most difficult and biggest decision of her life. But my curiosity got the better of me. I had to know more.

And about 15 minutes into our conversation, a vivacious Cecile extended an invitation to me, seemingly without giving it too much thought. "Want to see my new breasts?" she asked. "I'm so excited about them!"

In the suburban bathroom a determined Cecile, no shyness in sight, lifted her top. She removed her bra and proudly displayed two "reconstructed" breasts.

"What do you think?" she asked. "They're a little smaller than my natural breasts and I'm only getting my nipples in a couple of months, but I think I can learn to live with them." I found myself staring in awe at the results of a choice that Cecile had agonised over for three years: two breasts in the process of being rebuilt after a double preventative mastectomy, which entailed the removal of both her breasts.

Cecile's new breasts will have very little feeling; they won't even feel heat or coldness. Her nipples won't look like natural ones. She will no longer be able to fulfil her deep desire to breastfeed the babies she and her life partner so dearly want in the near future.

But Cecile said she was "at peace" and she seemed extremely proud of what she had done. The mastectomy in all likelihood saved her life. It had reduced her chances of getting breast cancer by up to 99%. She carries a cancer gene, called BRCA 2. In effect this means that, before her mastectomy, she had an 85% chance of developing breast cancer.

Geneticists have found that BRCA2 is particularly prevalent among Afrikaners and Ashkenazi Jews.

Genes
The gene was passed on to Cecile by her father. Her paternal grandmother died of breast cancer—an illness that usually affects women between the ages of 50 and 70—in her early 30s. One of her grandmother's sisters had five daughters, all of whom died of the disease at a young age.

Several of Cecile's cousins and aunts have been diagnosed with breast cancer. "Doctors told me that we cannot be sure how and when and if breast cancer will affect me, but the best we can do is to look at the person genetically closest to me who died of the illness to get an idea of what may happen to me.

"The closest person was my father's mother. And, although she died in her early 30s, she'd already been diagnosed with breast cancer when she was in her 20s. I realised I was at a really high risk of developing the illness at a very young age."

Cecile's decision to undergo the radical operation was dramatic—but also could not have been more correct. After her breasts had been removed, pathologists found abnormal "sleeping cancer cells", which, according to her surgeon Carol Benn, "are like a ticking time bomb waiting to develop into cancer".

Cecile described herself as "very lucky", but in reality her cancer-free status and continuing survival have had little do with good fortune.

In fact, her good health can be ascribed to a mental struggle that comprised three years of painstaking and emotional questioning and reasoning, of coming to terms with the loss she would face when body parts—the defining symbols of her femininity—would be lost to her forever.

Cecile developed breasts early—at the age of nine, in grade three, she was already wearing a bra. "I was never shy of my breasts," she said. "I loved them. I recall actually praying for beautiful breasts. They were a very important part of my identity." As a teenager Cecile developed a "fetish" for clothes that have been part of her "look" ever since: dresses and shirts with beautiful, low-cut necklines that accentuated her breasts.

"Breasts were always a big thing to me. I was always aware of them," she said, caressing the flower patterns on the blue dress that covered her chest. But at 23 she was told that the parts of her body she loved most were likely to kill her. It was her mother who encouraged her to go for gene testing after the many deaths in her father's family from breast cancer. Children of parents with the gene have a 50% chance of being a carrier as well.

Prevention
Cecile was initially presented with several options to prevent her from getting cancer, including lifestyle changes, hormonal therapy and rigorous screening. Finally, she was presented with the most extreme alternative—the removal of her breasts: the only choice in fact that would drastically reduce her potential for developing breast cancer.

"A lot of people get tested and do nothing. They argue that there are many risks in life and you can't prepare for all of them," she said, glancing at the 30-plus stork party guests, of whom, according to the Cancer Association of South Africa, at least one is likely to develop breast cancer in her lifetime—even if she does not carry the gene.

In the three years that it took her to make a decision, her relationship with her breasts "completely" changed. "From loving them, I became hostile towards them. I just wanted them off and to get on with my life," she said.

Initially, she wasn't perturbed about the "loss" that counsellors warned she would have to deal with. Instead, she concerned herself with thinking about all the operations she'd have to undergo. But doctors told Cecile that her nipples would be cut away too, as some cancers occur specifically in that part of the breast.

"I knew the larger breast reconstruction was good, but didn't realise my nipples would go and that the new ones would never look natural, or feel or react to touch," she said.

"It is obviously a sexual loss, which is the bigger part of the cost to me. And, if I lose a nipple, my partner loses a nipple as well. He will never again be able to be with someone with a natural nipple as long as we are together."

Cecile said counsellors warned her that many relationships didn't survive breast removal as women often lose confidence in themselves "in and outside of bed" and, as a result, change "significantly" after the operations. But, after a few therapy sessions, she was adamant: "It was important to me to tell my boyfriend that I could not keep my breasts for him, regardless of his feelings of loss. I could not be in a relationship if I was sick or dead."

From then on, Cecile involved her partner in "everything"—from writing complex motivations for funding to her medical aid to important decisions after doctors' visits.

One evening, as Cecile bathed, she decided to touch her breasts and gently kiss her breasts "goodbye. I was so extremely sad. There were so many nights of crying and anger," she said, tears welling up in her eyes. "But the pain and suffering I faced with the operations was far less than what I was likely to encounter if I kept my breasts."

When she woke up after the threehour-long operation, she had "two little bumps" for breasts. Her doctor had inserted temporary prostheses where her breasts used to be. Over the next few months, the "little balloons" were gradually filled with saline water through small pipes in each breast until they were the desired size. Eventually, the balloons were replaced with more permanent silicone ones. "I was so scared that I would be depressed and sad, but I was euphoric from the moment I woke up after the operation. I was so extremely proud of being so brave to go through with this."

But Cecile still faces an uncertain future: BRCA 2 means she is also more vulnerable to gynaecological cancers such as those of the ovaries and uterus. Her children will have a 50% chance of carrying the gene.

The decision to have babies is therefore complex, but she is determined: "I will not let this gene define me, just like my breasts won't define who I am. What if I didn't exist because my father knew he was a carrier?" she asked.

Cecile said her new breasts were "more or less" the same size as her natural ones, but were "flatter" and "not completely round". Her sex life had changed, she acknowledged, but she and her partner were "dealing" with this. "Sex is about much more than breasts, surely. We must make of my new breasts whatever we want. We must make them our own and start to love them."

Back at the stork party, women who know about Cecile's operation or know women with breast cancer are eager to learn from her. And, more often than not, they want to see the results of her amazing decision. Their curiosity doesn't bother her. "I show the reconstructed breasts to anyone who indicates an interest in them—even if they don't ask to see them," she said.

"Cancer is just such a huge health issue. I have realised that almost everyone I come into contact with has some sort of relationship with cancer, especially with relatives who have or have had cancer."

She talks freely to people about her unique experience with cancer, partly to give them hope, but also to sustain herself.

There was a point in the past, Cecile said, when she decided to "just be quiet" about what had happened. Then, she smiled and said: "Sometimes silence isn't golden. Sometimes silence breeds fear. And no matter what happens in the future, I am no longer afraid. If by just speaking about what I've gone through to others I'm able to ease their fear about cancer, I think that will add value to my humanity."

All the facts
Protect yourself

  • Examine your breasts at least once a month and, if you are over 40, go for an annual mammogram, sonar and clinical examination.

  • Don't eat too many saturated fats. Avoid anything fried, including junk food.

  • Go green. Stock up on fresh fruit and vegetables.

  • Watch your weight. Increased body fat is linked to a rise in oestrogen levels, which increases the risk of breast cancer.

  • Don't drink more than two alcoholic drinks a day.

  • Exercise will decrease your breast cancer risk by 30%.


Source: Dr Carol-Ann Benn, Netcare Breast Care Centre of Excellence, and Professor Justus Apffelstaedt of Tygerberg Hospital's Breast Clinic

 

The danger signs

  • Nipple discharge;

  • A lump or thickening in the breast;

  • A sore on the nipple that does not heal;

  • A hot, tender breast;

  • A change in breast shape;

  • Specific areas of pain in the breast;

  • Swelling or pain in the armpit.


Source: Dr Carol-Ann Benn, Netcare Breast Care Centre of Excellence/Locks of Love Breast Health Awareness Campaign

 

Know where you come from
Get to know your mother and father's family history. If a woman's mother or sister has or has had breast cancer at a young age (30 to 40 years), then her risk of developing the disease is doubled. The risk also increases after using hormone-replacement therapy for more than five years and women who have their first pregnancy in their ­30s run a higher risk. Source: Dr Carol-Ann Benn, Netcare Breast Care Centre of Excellence/Locks of Love Breast Health Awareness Campaign

Mia Malan works for the Discovery Health Journalism Centre at Rhodes University

Mia Malan

Mia Malan

Mia Malan is the Mail & Guardian’s award-winning health editor and the founding director of the newspaper’s health journalism centre, Bhekisisa. She heads up a team of fifteen permanent and freelance staff members. She loves drama, good wine and strong coffee, not necessarily in that order. Read more from Mia Malan

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