Ellie’s Story

Lying in bed one night, resting my hands just below my collarbone I felt a tiny bump on my chest, very high, not even really on my breast at all. I lost my mother to cancer 15 years ago so was already diligent with my health; I went the next day to get a scan.

The scan showed a 6mm tumour. At age 38 I was diagnosed with triple negative breast cancer, one of the most aggressive types of breast cancer and occurs more frequently in younger women. All I could think about was that I wouldn’t get to see my beautiful kids grow up, my nine-year-old son and six-year-old daughter.

Hearing my diagnosis sucked me into a black hole; I was looking at the world from the outside, like I was no longer included in life. It was the darkest place I’ve ever experienced. Immediately after my diagnosis I was admitted to hospital for an urgent lumpectomy.

I was lucky. Lucky I found the lump early, lucky I took action and had the scan, and really lucky that the lumpectomy results showed clear margins and nothing in my lymph nodes. Following surgery my gorgeous and incredibly thorough husband booked us in to see every top specialist in Melbourne to determine the best course of treatment.

 It was agreed I should do three months of TC chemotherapy (TC comes from the name of the drugs taxotere cyclophosphamide). I had four rounds in three-week increments. During this process I found out I had a BRCA 1 genetic mutation. There was no known case at this time in my family.

Unfortunately, my best friend Lisa who is also my sister tested positive to having the gene. So did my two male cousins, my dad, my uncle and aunty. There are now nine kids under the age of 16 in our family who have a 50/50 chance of being carriers too. Two months after I recovered from chemotherapy, Lisa and I booked into the same hospital to have double mastectomies on the same day, by the same surgeons.

We shared a hospital room and I clearly remember the first morning we felt strong enough to get out of bed, we strapped our drain tubes on to head to the cafeteria for our first coffee. When we got to the closed door of our room neither of us had the strength to open it. We just stood there laughing at our hopeless situation. We’ve always shared humour as a coping mechanism and it’s funny for us to think back to that day now that we’re both fit and strong again. The recovery was painful but I had my sister by my side and I healed quickly.

Two months later I had a full hysterectomy. This too was painful; I did too much during the recovery process but again, was lucky to heal easily. I’m also grateful that considering I didn’t have a hormone receptive cancer I can now take oestrogen which is beneficial in so many ways after being thrown into surgical menopause before the age of 40.

Now my body feels the most normal it ever will after such an ordeal, it’s started to feel natural again. Diet and exercise played a major role in getting back to feeling good after all that happened, and not letting fear get the better of me. Some health experts said I could’ve prevented cancer with lifestyle choices rather than surgery, but I don’t believe that at all. For me it wasn’t a chance worth taking. Until medicine advances enough to come up with better prevention strategies I feel surgery is necessary.

I’m incredibly hopeful and optimistic that these advances will happen in the next 20 years before my beautiful daughter potentially has to make the same decisions I’ve had to make. I’ve started an annual fundraiser, The Winter Ball, to raise funds for the research team at Walter and Eliza Hall Institute of Medical Research in Melbourne who specifically research BRCA related breast and ovarian cancer. I’m passionate about working hard for this cause over the next 20 years to help accelerate the research towards prevention and cure.

Thank you for listening to my story.