When D-Day’s DE NOVO 

My name is Sue, I’m a wife, a mum, a nanny, a daughter, a friend, a Metastatic Breast Cancer patient, and an advocate. 

My breast cancer diagnosis, back in April 2021 at the age of 57, was completely unexpected and shocked me to the core. 

My breast cancer is called DE NOVO. 

Metastatic Breast Cancer (MBC) often occurs years (sometimes months) after a primary breast cancer diagnosis and treatment, but for some, MBC is diagnosed at the same time as the primary breast cancer, or occasionally as an incidental finding, before the primary breast cancer has even been discovered. 

These patients are classed as DE NOVO (de novo literally means ‘new’) and will not have had a previous primary breast cancer diagnosis.  Around *5% of patients with breast cancer will be diagnosed de novo. 

At the time of presentation, the breast cancer will have already metastasised to another part of the body (often bones, liver, lungs, lymph nodes or brain) meaning that the metastatic (or secondary) breast cancer is classed as treatable but incurable. 

De novo metastatic breast cancer is sometimes referred to as being ‘treatment naïve’ because it has not previously been treated with any anti-cancer treatments, which may mean that the cancer will be more responsive to treatment initially. 

Everyone is familiar with the importance of knowing your body, being breast aware, self-breast examinations and regular screening, when applicable, and as a clinical ultrasonographer who had worked in areas of radiology imaging my entire career, never did I think in a million years, that my excruciating breast bone (sternal) pain was breast cancer, especially as I had no palpable lump and had a ‘normal’ breast screening mammogram only five months prior to my diagnosis. 

How could this have happened? 

How could I have missed this? 

How can this be possible? 

I felt cheated, cheated of my family, cheated of my career, cheated of the chance to recover from breast cancer, cheated of my life.  

Being told at my second clinic appointment with my newly acquainted breast surgeon, that not only did I have breast cancer, but that the breast cancer had already spread extensively and complexly to lymph nodes, lungs and sternum, that mastectomy and chemotherapy was not an option, that my disease was now considered incurable, was incomprehensible and life as we knew it changed for our immediate family. 

Despite the de novo rollercoaster, my cancer is responding well, and almost three years since diagnosis, I have recently celebrated my 60th birthday.  

My disease remains stable and I never underestimate how fortunate I am to still be on my first line of treatment. 

Moral of the story: whether it is primary, metastatic or de novo, know your red flag signs and symptoms – if something doesn’t feel right, make sure that you get it checked out. 

*NATCAN scoping report November 2023