My mum with her parents and siblings, Rio de Janeiro

Breast cancer has stalked my family for generations. First, it was my grandmother whom I never met. Then an aunt, a cousin, my sister and, just last week, my mother heard the four awful words: “you have breast cancer”. It’s been very traumatic for everyone. Right now, I don’t view breasts as symbols of beauty, sexuality, and nurturing. They feel more like weapons of female destruction. When I see women gathered together, I’m now doing a headcount and applying the statistics. The other day at the office there were sixteen women on my floor. All young and full of potential but two of us will develop the disease in our lifetime. With such a family history, I’m a strong candidate. Every woman lives under the shadow of cancer but my shadow is darker.

Over one and a half million women are diagnosed with breast cancer each year globally. Considering that there are 3.5 billion women on the planet it doesn’t look like a lot of risk. But your chances increase as you get older, if you have a family history or carry mutations in the BRCA 1-2 genes. I’m not getting any younger and as the years go by, more females are being diagnosed with breast cancer in my family. When you are on the wrong side of the statistics, numbers look too close to home.

Doctors say that the chances of getting breast cancer can be reduced by not drinking alcohol or smoking, being physically active and maintaining a healthy weight. Neither my mum nor my sister took chances. They didn’t drink or smoke. They were not overweight. I fact, when my sister was diagnosed four years ago, she was a super fit and enthusiastic cyclist and runner. But her healthy lifestyle did not prevent her from getting the disease. Luckily, both my mum and sister had always done annual breast screening and the disease was picked up early, increasing their chances of survival.

Like my sister, I eat well and exercise and see a breast specialist annually armed with the films of mammogram and ultrasound. But now I’m scared that this isn’t enough. I’ve been thinking about my chances, which are high, and my options, which aren’t many.

“When are you removing yours?”

In recent years, prophylactic double mastectomy (PDM) has gained popularity as a preventive procedure for women at high risk of breast cancer. Angelina Jolie brought the surgery to the spotlight when she bravely went public about testing positive for a mutation of the BRCA-1 gene and her decision to undergo the risk-reducing surgery. The extensive coverage of Jolie’s news has raised awareness about preventive surgery and opened a much needed public conversation about genetic testing, medical risks and women’s choices regarding their bodies and health. But the flip side of the celebrity endorsement is that now there is the impression that preventive mastectomy is the standard way to manage the risk for women at high risk.

When I talk to people about my family history I’m often asked: “what are you going to do about it?” Maybe I’m becoming paranoid but I can see their enquiring eyes glancing at my boobies and wondering if I’ll do what Jolie did.

Well, I’m not rushing to the surgical table. I’ve been researching about breast cancer risks and prevention and I’m not convinced that prophylactic double mastectomy is a superior choice when trying to ward off the disease. I don’t want to discourage anyone from doing it, it’s a difficult and utterly personal decision, one that a requires courage and consideration. I’m writing about it because there are women like me that feel like they are going against established medical best practice and women that may not realise that there are other options that are just as valid.

After reading countless articles online, I was left with the impression that the general public considers PDM a cure-all procedure but this is not the case. In 1997, the Cancer Genetics Studies Consortium, issued a statement saying that there is “insufficient evidence to recommend for or against prophylactic mastectomy as a measure for reducing breast cancer risk. Individuals should be counseled that this is an option available to them. Those considering prophylactic mastectomy should be counseled that cancer has been documented to occur after the procedure; its efficacy in reducing risk is uncertain.”

Since then, studies have been conducted and many claim that PDM can reduce the chances of breast cancer by up to 95%. I could not find many clinical trials to support that. Most studies I came across involved women that had previously had breast cancer. Two trials of cancer-free women at high risk caught my attention. The first one predicts that mortality from breast cancer can be reduced 81-95% and the second, that incidence reduction at 3 years is 100%. You look at these space studies and feel hopeful. But the European Society for Medical Oncology warns that “no randomised controlled studies on this issue have been carried out. No survival benefits have been demonstrated in women who have undergone RRM.”  This was published in 2016.

There are two types of prophylactic mastectomies: Subcutaneous mastectomy, which removes tissue under the breast, leaving the skin, areola, and nipple intact and a total mastectomy which as the name suggest, removes the entire apparatus. But not even a complete mastectomy can remove all breast tissue. You can find breast tissue in the abdomen, chest wall, beneath the nipple and other parts of the body. Some studies that indicate that removing a large proportion of the tissue does not remove the same proportion of the risk. Many women that have a preventive double mastectomy with no previous cancer history later develop breast cancer.

 I want to believe you can take control of your health. But there are so many figures brimming at your face that makes you feel that authors are simply using statistics to support their point of view. In Jolie’s case, she preserved her nipples and this increases the chance of a breast cancer diagnosis in the future. In her article, she says that her chances of breast cancer dropped from 87% to 5%. But Jolie is reportedly a smoker and studies show that cigarettes increase your risk of breast cancer. This study concludes that just 100 cigarettes smoked in your life increase your chances of breast cancer by 30%.  Even if she is no longer smoking, I wonder if her past use will detract from the 5%? There are so many variables with health statistics, I’m not finding safety in these numbers.

I looked at the average rates of breast cancer survival. Statistics vary depending on the stage of the cancer, age at diagnosis and types of treatment. But in general, five and ten year survival rate of stage 1 breast cancer is 100% and 89% respectively. These numbers are very similar to the outcome prophylactic double mastectomy. If you are simply comparing numbers, either early detection or PDM will provide you with equivalent results.

Numbers aside, a double mastectomy is not a boob job like many people think. Breast plastic surgery is generally a cosmetic day surgery with minimal chance of complications. By contrast, women that undertake mastectomy typically undergo a complex eight-hour surgery and go through multiple procedures. Their body is disfigured. After surgery, many suffer from restricted range of motion, muscle weakness and numbness for months and sometimes for life.

I have no attachment to my breasts. I’m not against surgery (I had two elective caesareans). But a PDM is a drastic measure that does not rule out the possibility of cancer. I don’t think that the likelihood of developing a disease means a certain fate. There are some important questions that are not being asked. What about the women at high risk that do not develop breast cancer? Why aren’t their mutated genes or hereditary predisposition triggering the disease? Is there something in their environment or biology preventing cancer to occur? I wish I could find answers to these questions.

Many women at high risk opt for selective oestrogen receptor modulators (SERMs) or surveillance instead of mastectomy. See chart below from the Cancer Forum.

SERMs can reduce the risk of breast cancer by up to 40%. The medications include tamoxifen (for pre-menopausal women) or raloxifene (for post-menopausal). These medications only work to prevent tumours that are responsive to female hormones. They work by blocking the effects of estrogen on breast tissue. When I read from various sources that the medication may cause serious side effects, including blood clots, stroke, and endometrial cancer I stopped looking at this option. These side effects are a show stopper for me but they are not for many women and this is an alternative they may want or need to consider.

This brings me to the final alternative, surveillance of the breast. This includes clinical breast examination, mammogram, ultrasound (I have doing the trifecta annually since my twenties) and MRI. My doctor mentioned MRI in the past as an additional tool to investigate suspicious alterations in the breast. MRI and mammogram seem to be a common practice for women at high risk in the US.

Surveillance does not reduce the risk of developing breast cancer but it does improve your chance of catching cancer early, at a curable stage. My grandmother and aunt were diagnosed decades ago and there were no regular screening back them. They both perished soon after they heard the fatal news. My sister skipped a year of screening and was diagnosed with stage 2 but thankfully her prognosis was very positive. Mum is still doing tests but it’s looking like it’s an early stage cancer. Many of my friends and acquaintances have been diagnosed in recent years. The ones that were diagnosed early and treated are leading happy lives and raising their families.

Some question the risks of radiation from mammography. Doctors and radiologists claim that the test is safe, that there’s only a very small amount of radiation exposure from a mammogram. My radiologist said that you get more radiation on a flight from Sydney to Melbourne. If I had the choice, I would not be exposed to radiation but I reckon the risks of not doing the screening would be higher.

Considering all this, for now I’ll continue with my regular check ups. I will discuss with my doctor adding an MRI to my repertoire of tests. I say for now because who knows? A future science breakthrough might change my perspective or create new alternatives.

While there is no cure, cancer will continue to try to kill the women of my family and of millions of other families out there. Mum doesn’t know yet what the treatment will be for her cancer but judging from others in the family, it will involve surgery, radiation and chemotherapy—painful, disfiguring, stressful. But her prognosis is looking good so far. I may be suspicious of health statistics but I hope that mum will be on the right side of the numbers this time.

Suggested reading: The Choice. By Mark E. Robson, M.D.