Breast Cancer, Angelina Jolie and Exploring Genetic Testing

Screen Shot 2013-05-14 at 7.55.47 PM

It was around midnight when I saw The New York Times’ Twitter feed linked to an article on its opinion page about Angelina Jolie. It read: “Angelina Jolie on why she had a double mastectomy, and how it could save lives.” I clicked on the link.

Reading Jolie’s explanation of her recent decision to undergo a double mastectomy — as a preventative measure against breast cancer — was fuzzy late at night. I had been engrossed in my school work and holding late night vigils in the glow of my laptop, eyes at half mast but open from the effects of too much coffee. Jolie wrote about how, in 2007, her mother died of cancer after a ten-year battle. Jolie had then decided to become tested for the genetic mutation that substantially increases the risk of the carrier of developing breast cancer. The tests confirmed that she did indeed carry a gene mutation and in her case, she had approximately 87% chance of developing the disease. She completed her series of preventative medical procedures and surgeries in April.

Well, both myself and the rest of the world had not been privy to Jolie’s health circumstances until the publishing of her article. For a Hollywood actress and paparazzi magnet such as Jolie, her private life and medical decision had been very carefully under wraps. But she chose to write a public and very moving account of her medical counselling and surgery through her own words and terms. Her article is clear in that her motives are not to broadcast circumstances of her non-acting life to the world but to spark a discussion on women’s health, breast cancer, and cancer prevention.

Jolie’s article comes two days after Mother’s Day was celebrated here in Canada and many other nations abroad. I had sent a message to a friend now living in Hong Kong to wish her a happy first Mother’s Day, then enquired about whether Mother’s Day is actually celebrated in that part of the world. It was, in fact, and her husband took her and their infant son to Hong Kong Disneyland. I laughed at the photo she sent to me of her and her family posing with Mickey Mouse.

On Sunday I was and still am away from my family in Toronto, and spent the day here in Montréal with my head in my books. But I thought about my mother who passed away when I was twenty years old after battling cancer for eleven years. It also happened that I saw a breast cancer surgeon a few days earlier because, as I explained to my boyfriend, it was time again to have old doctor hands feel my boobs in ways no one else has ever felt my boobs.

My mom was first diagnosed with breast cancer at age forty-one. We had been living in a Toronto suburb for about five years after moving from Seoul, South Korea. She had felt a hard lump in her breast but my dad was convinced that it was not cancer. At the time my dad mistakenly believed that only women with large breasts were susceptible of being diagnosed with such a disease, unlike my mother whose chest, like mine, was small if not completely flat.

When I was nine years old, my mom underwent a mastectomy to remove one of her breasts where the tumour was detected and came home with a large diagonal scar across her chest. I knew what “cancer” meant at that age because a few years earlier, my dad’s uncle, one of our only relatives here in Canada, had passed away from cancer. It was the first funeral that I remembered attending so I equated “cancer” with “death”, and became extremely fearful that my mom would die too. Well, I knew we would all die in time but her impending death was always imminent and the eventual cause already set in stone.

My dad worked a lot and often left the country for long periods due to his work, but during the time my mom first became ill he had quit his previous, high level corporate position to run a retail store closer to home. However, my mom was now bed-ridden and bald from the effects of chemotherapy. I became filled with fear, and I often tip-toed to where she was sleeping to place my hand below her nose to check that she was still breathing. As a child, I became obsessed with making life easier for my mom, which meant that I learned to suppress my own, insignificant needs, and do everything and anything to help my mom. In my young mind, I thought that by becoming the perfect child, I could lessen her levels of stress and hence somehow cure her cancer.

However, my mom was diagnosed with breast cancer once again, this time in her other breast. I was a few years older now, and remember sitting in her bedroom floor, my mom explaining that she had another tumour and placing my hand on her chest to feel the small, hard lump attached to her body. She wanted my sister and I to know what a cancerous tumour felt like, but my sister seemed afraid of touching the tumour unlike myself. My mom soon underwent another surgery to remove the tumour as well as another mastectomy to remove all that she had left of her breast tissue. My dad rushed for us to take formal family portraits as the risk of my mom’s death became urgent once again.

Having cancer for eleven years meant that my mom was partially, if not completely, disabled most of the time. She could not work, she did not have energy to complete all household tasks, and was under constant pain. My mom was also in hospital on and off throughout the years, and the sterile medical environment became a familiar place. This experience really pushed the belief in me that being healthy was precious, but could be taken away so easily with drastic results. I became very health conscious myself, while my mother followed a naturopathic diet and regimen from the advice from a non-certified, non-medical quack who charged large sums of money for his so-called expertise. My mother, desperate for cures, believed in him and my father reluctantly shelled out thousands of dollars over to the fraud over the years.

Despite all my mother’s strange health rituals and visits to Catholic shrines and churches (including many here in Québec), the cancer spread beyond her breasts to her blood, then brain, then liver. She passed away while both my sister and I were completing our undergraduate studies in university.

As I had mentioned earlier, I knew that my mom would die, and I knew it would be sooner rather than later, and I knew it would be because of her cancer. But the reality was that now she was dead, and I had lived most of my life at that point waiting for this moment to happen. And when it finally came true, I felt lost without the backdrop of that constant fear of my mom dying.

However, the few things that I did know and did do at that point was to visit a genetics counsellor in the small Ontario city where I was attending university. After my mom died, my doctor recommended that I visit the clinic to see if I qualified for breast cancer screening through an expensive blood test that may be covered by Canadian health insurance. I already knew that, due to my mother’s breast cancer diagnosis, both my sister and I should be careful and look for early signs of breast cancer. My mother was also diagnosed at a relatively early age with cancerous tumours developing in both her breasts, signs that pointed to a higher possibility that her breast cancer was genetic. She had also been convinced that the cause of her mother, my grandmother’s, death was also due to breast cancer but in post-war Korea a diagnosis could not be confirmed.

So I visited the breast cancer center with an appointment with a genetics counsellor nurse who went over my family health history and the details of my mom’s diagnosis. The nurse explained that, given the existence of certain risk factors, I would benefit from genetics testing to determine whether I carry the faulty genetic mutations that increases my chance of developing breast cancer. The circumstances of my mother’s cancer pointed to the possibility of a genetic cause, but because it could not be confirmed that her mother had breast cancer amongst other high risk factors (my mom’s two sisters have not been diagnosed with breast cancer as well), the nurse recommended that I do not undergo genetics testing. If she had, my provincial health insurance at the time (OHIP, or Ontario Health Insurance Program), would cover the costs of the testing. In the U.S., the cost is estimated to be about $3,000 USD.

Instead, the nurse recommended that when I reach the age of ten years prior to my mom’s initial cancer diagnosis, I start being followed by a breast cancer specialist and receive regular breast cancer screening. Additionally, the nurse provided me material about breast cancer, risk factors, and instructions on performing self-breast exams. As I am now in my 30’s, I have been followed by The Cedar Breast Clinic here in Montréal.

Last year was when I had my first breast ultrasound to provide a baseline snapshot of my breast tissue as it changes over the years. The surgeon explained that, because my boobs are small and dense (a backhanded compliment? Just kidding!), that mammograms may not be very effective in examining my breast tissue though he insisted that I subject myself to the ruthless mammogram machine by my mid-30’s. When I had my ultrasound, the technician was able to pinpoint that I currently have benign cysts in my breasts but they could only be detected through imaging as I honestly could not feel them myself. This was scary — what if I have malignant tumours and I cannot feel those either?

However, I do not feel much fear when it comes to my breasts. I do not think they are “ticking time bombs” as apparently some women like to label their breasts, but I do recognize that I need to be vigilant and make the right kinds of life choices to decrease my risk. Most breast cancer is not caused by the genetic mutations, so even if I were to not carry the gene mutation, I am still at risk because one in nine Canadian women will be diagnosed with breast cancer in their lifetime. Breast cancer is still the most common type of cancer in Canadian women.

Hence, I try to educate myself and practice certain lifestyle choices, though of course it is impossible to control for all possible risk factors. This means that I exercise regularly, maintain a healthy weight, and limit my alcohol consumption amongst other known and emerging factors that are being studied and established. Two conscious changes I made in the past few years was avoiding chemical sunscreens when possible and switching to non-hormone birth control options. Young women may not concern themselves that much to looming and possible health issues, but it is really at this time that individuals should set healthy patterns and decrease future risks of disease that may become apparent over the years. You can read about my lifestyle choices for decreasing my risk of breast cancer in this previous post, Pink Ribbons for Young Women.

In the future I may decide to undergo the genetic testing for the breast cancer mutations, either because I become covered by a health insurance that would cover part of the costs, or by paying for it entirely out of pocket. Unlike Jolie, I do not have children (yet) whom may prompt me to more aggressive risk mitigating behaviours, but I think about the last decade of my mom’s life and do not want to experience the years of disability and pain. And perhaps a double mastectomy as a preventative measure is in my future, something that I have always known may be a possibility in my lifetime. But not all women are educated about their risks of developing cancer and the choices that may be available depending on their personal circumstances. And it is for these people that Jolie penned the opinion piece, yet again using her celebrity status to bring awareness and education to social issues. And while I never really cared for her acting, movies or celebrity life, I applaud Jolie for using her privilege to bring attention to social causes and issues.

Previous Posts on Breast Cancer:
Pink Ribbons for Young Women
In Defence of Moustaches and Pink Ribbons

Advertisements
3 comments

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: