13/10/2017 10:18 AM AEDT | Updated 13/10/2017 10:38 AM AEDT

What Life Is Like With A Cancer They Cannot Cure

Metastatic Breast Cancer. The average person struggles to pronounce the word let alone understand what it means.

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Breast cancer has become so common that we are almost immune to hearing about it, until it strikes us. Being diagnosed with breast cancer is a shock, yet many women have successfully overcome early breast cancer and resumed healthy lives, despite the predictable ordeal of chemo, surgery and radiation, a.k.a 'poison, slice and burn'.

A lesser known fact is that for some women (25-30 percent) breast cancer returns at a later point in life -- even after 25 years or more. Even without breasts. The original breast cancer spreads (or metastasises) to another part of the body -- usually the bones, liver, lungs or brain.

However, some women are thrown in the deep end without any warning. Up to 10 percent of women are diagnosed upfront with metastatic breast cancer (MBC). This was my fate two weeks after returning from taking my two children (then 10 and eight) to learn to ski in Canada.

No symptoms except for a slightly dimpled right breast. There was widespread distribution of (breast) cancer in my bones -- my skull, vertebrae, clavicle, ribs, spine, hips, femur and humerus -- not much left unscathed.

I had invasive lobular carcinoma. This kind of cancer is typically slow-growing and often goes under the radar, hence the importance of ultrasounds. I was totally shell shocked. I vividly recall trying to process the enormity of the diagnosis and the implications.

The prognosis flipped. Chemo or surgery were no longer viable options.

Death remains a taboo word. If cancer remains a stigma, death is even more so.

Unlike early breast cancer where the goal is to excavate and get rid of the cancer, treatment is lifelong. The aim is to contain it as best as possible, slow down the progression (to or in the other organs) and keep it stable.

Three days later I had my ovaries out -- this was the easiest decision of all -- one where I had some control. This cut off the fuel supply. I was screened for a clinical trial with all hopes pinned on this, but then failed the eligibility criteria.

The vulnerability experienced in the initial months was excruciating -- total loss of control and overwhelming fear. Scans are intimidating. A robotic voice commands, "breathe in now", "hold", "breath out now". No pleases or thank you's just commands which you unwittingly obey. Whilst not so daunting they still conjure up a total sense of helplessness as you await the next set of results -- to see if the cancer has spread further.

Fortunately, I started another clinical trial four months later after meeting my wonderful oncologist -- who will manage my cancer until we exhaust treatment options. I will never forget the words from another oncologist when first diagnosed:

"We can put out the flames but it will always smoulder... You will learn to live with cancer and... you will have to overcome the stigma of cancer."

Simple as that. However, there is no choice. Death remains a taboo word. If cancer remains a stigma, death is even more so.

In some ways it is just oh-so liberating, but in other ways just so terrifying. What if I'm not here to see my children finish Year 12? Or Uni? To see them get married and have children. Worse still, who will look after them? Everyone says you must live in the present -- this is what cancer forces you to do. Again, there is no choice -- accept it and embrace life today.

The Pink campaign has been extremely successful in raising awareness about early breast cancer. Yet mention 'met-a-static' and the average person struggles to pronounce the word let alone understand what it means.

The bewildered look of confusion on the recipient's face normally says it all. "But you look so good and so healthy" people exclaim -- offering words of encouragement for something that most of us just don't confront -- and that is our imminent mortality.

It is so incredibly frustrating that many of us believe breast cancer is curable, and wait; if you are strong, determined and positive, then you can beat, fight and overcome the cancer. This is unfounded. True, a positive mindset helps maintain resilience but this does not prevent the cancer from killing you.

I was flooded and overwhelmed with suggestions, and like being pregnant was inundated with so much unsolicited advice. "Do this", "do that", "have you thought of this?" or "tried that?" -- became the mantra wherever I went. The only difference between pregnancy and metastatic breast cancer is that with pregnancy you end up with a new life in your hands, but with MBC you end up fighting for one.

The other confusion lies within the breast community itself -- the terms have become somewhat blurred: what exactly defines a survivor and what does advanced breast cancer mean? So is there beginner's or intermediate breast cancer? No there is not.

There are Stages 1 through to 4. Advanced or metastatic breast cancer is also known as Stage 4 and is considered incurable. However, women diagnosed with Stage 1, 2 or 3 can often be 'cured' from their cancer and survive.

Since 25-30 percent of women will have their breast cancer reappear, irrespective of their earlier treatments/intervention, it's extremely important we raise awareness around this form of cancer. Today is officially Metastatic Breast Cancer Day, do your part and let's spread the word about this disease.


There will be a flash mob to raise awareness about metastatic breast cancer on October 13 in Martin Place. You can find out more information here.