The power of the personal story

Statistics and data have an important role to play in understanding the impact of breast cancer in Australia. However, nothing can motivate action and change minds like a personal story.

When we launched our State of the Nation report at Parliament House in Canberra (read about it here), we knew no fact or piece of evidence would strike a chord like the story of one of our members.

We invited Emily to put a face to the statistics and share her breast cancer story with Members of Parliament and other guests at the launch. This is the speech she gave on the night.

Standing here at Parliament House, in the nation’s capital, in front of our distinguished guests, it gives me great pleasure to talk to you about nipples! Nipples and discharge! Don’t worry, I won’t show you mine. After a double mastectomy, I couldn’t even if I wanted to.

BCNA has asked me to talk about my experience with breast cancer.

Two years ago, I started having discharge in my left nipple. At this time, I was 26 and studying full-time to be a primary school teacher at the University of Canberra. I was working part-time at The Body Shop, spending time with my friends and planning to move in with my partner. I initially put my symptoms down to something hormonal and didn’t think too much into it.

But eventually the discharge turned into pain and discomfort. After a few doctors’ appointments and several ultrasounds, mammograms and biopsies I was diagnosed with stage 2, HER2-positive, hormone negative breast cancer.

When I was diagnosed, I was devastated. Luckily, my beautiful mum was sitting next to me in the doctor’s office when we were told, so I didn’t have to break the news to her. Coming home to tell my partner, my dad and my brother was nothing short of gut-wrenching.

Over the next few days, our house was full of tears, hugs, worries and love. I’m so grateful to have never felt alone during my treatment. My family, my partner and my friends surrounded me with love and support. They did the whole time, and they still do now.

After I was diagnosed, I was told that my regime would be seven months of chemotherapy, followed by a bilateral mastectomy, 12 months of Herceptin, 30 rounds of radiation therapy and reconstructive surgery.

During one of my early appointments, mum asked my breast care nurse if the chemotherapy was going to impact on my fertility. It came as a huge shock to me to find out that it would.

I was referred to see an obstetrician-gynaecologist here in Canberra, who recommended that I have my eggs harvested and frozen until I’m ready to have children. Fortunately, I was given financial support by my family. For many young women this would not be the case.

As a 26-year-old full-time education student, I certainly did not have $10,000 on hand to fund this on my own. Medicare does provide a rebate for eggs frozen due to medical circumstance, but there is still a substantial out-of-pocket expense. This is a huge added stress for young women facing breast cancer.

During my treatment, we discovered that the cancer had spread to the lymph nodes in my armpit, which had to be removed. This surgery, combined with radiation, left me with lymphoedema in my arm. This happens to roughly one in five women after their breast cancer treatment. Lymphoedema causes swelling in my arm, which makes it feel swollen, painful and tingly.

It also means that I now need to wear a compression garment on my arm every day. The garment costs around $250 and has to be replaced every three months. The $1,000 a year that I will be spending on these garments going forward does not have a Medicare rebate.

As an early breast cancer patient in remission, I have the privilege of surviving. I am a cancer-free young woman, with a long life ahead of me. I have a beautiful family, a loving partner, and wonderful friends. I am nearly finished my teaching degree and when I’m ready, I have those frozen eggs in storage to start a family.
But, as an early breast cancer patient, I also have the challenge of surviving and survivorship is not without its difficulties. The fear of recurrence is constant.

During active treatment for cancer, we constantly have doctors’ appointments, scans, and contact with nurses and specialists. Being a full-time cancer patient becomes the norm. After finishing active treatment, all of these things come to a grinding halt.

The best way that I can explain it to those who haven’t been through breast cancer is that during your treatment, your breast cancer takes up all of your physical time and less of your thoughts. You’re focusing so hard on staying positive and getting from one appointment to the next.

After active treatment, the physical side is largely over. It’s during survivorship that mental health becomes more of a concern.

Today, I am taking medication for my depression and anxiety. My body will never be the same after what I’ve been through and the person who I was before my cancer is gone.

The silver lining is that I am much stronger, more resilient and more determined than I was before.

I want to encourage young women to advocate for themselves. Get to know what feels right in your own body and if something is off, talk to your GP. Don’t take ‘no’ for an answer when it comes to your health. You’re the expert on your own body.

Thank you to BCNA for inviting me to share my experiences with you. I look forward to seeing what we can achieve together in the next 20 years.

Issue 83
Spring 2018