It was September 2018 when I noticed I had a small lump, the size of a pea in my left breast. At the time, I was travelling in Europe with my husband, as we had decided to take 12 months off work for the trip of a lifetime. I was about to turn 30.
Initially, even though the lump was small, something in me just knew it was cancer. After a couple of weeks, I noticed the lump was growing, so my husband and I decided to go to the emergency department in Norway, en route to seeing the northern lights.
The doctor I saw at the time was not concerned, stating it was ‘probably nothing’ and that I could confidently continue to travel. But my body didn’t feel right, and the lump was hard and sore to touch.
In the past I had trained as an international aerobics’ athlete, and in my work as a physiotherapist, I was always keeping my body in shape. Whilst travelling, some days were more strenuous than others and I started to notice my body feeling weak. Even simple exercise became harder than normal.
We decided to finish our trip and as soon as I returned to Australia I saw my GP. Following an ultrasound, the results were inconclusive, even though the lump was still growing, sore and tender. By this stage, it was the size of an egg.
Taking matters into my own hands, I decided to research a range of appropriate specialists and surgeons to look at the lump. I made a list of eight, who I contacted and asked for an appointment.
To my surprise, only three out of the eight considered seeing me, suggesting that because of my age and the lack of a biopsy, there was no real cause for concern.
In fact, one surgeon in particular said I couldn’t schedule an appointment until March 2019, which incidentally ended up being around the same time I ended up finishing my chemotherapy.
In finding the right surgeon, I immediately went through a series of scans, plus an MRI. On the 17th December I was diagnosed with stage three, triple negative breast cancer, which had already spread to my lymph nodes.
It all happened so quickly. The following day I was booked in to see a fertility doctor, which was something that had not even crossed my mind. My husband and I want children, but the thought of having to go down this route so soon added to the shock we were still both in.
With my chemotherapy starting in the week, freezing my eggs was not an option, so I decided to have partial ovarian tissue cryopreservation surgery, otherwise known as freezing part of my ovarian tissue. Unbeknownst to me, it turned out I also have endometriosis, and while the surgery was successful, this is a further challenge I will need to overcome when the discussion of having children returns.
After feeling like no one was taking me seriously, to finding out I had stage three breast cancer, there was no time to waste.
Trusting I had found the right people and right treatment path
I felt I had done my research in finding the right specialists and trusted them implicitly when it came to the treatment recommendations offered.
I started chemotherapy before Christmas and due to my age and general good health, I received a double dose of the drug every two weeks until April.
Two weeks following my last round of chemo, I then had a single mastectomy with an implant reconstruction and an axillary node clearance. The surgery went really well; however, I did suffer from a side effect known as cording, or axillary web syndrome.
It feels like tight cords running from my armpit and even behind my breast, down my arm into my hand. They can also extend down into my abdomen at times. They present like spider veins pulling from my armpit to my elbow, causing pain and restricting movement. I was warned prior to my surgery that this may be a side effect with the node removal, as it can be common amongst lean people. However, there wasn’t anything I could do prior to surgery to prevent this from happening.
I saw my lymphoedema physiotherapist who agreed the cording was worse than expected for such a short time post-op. Being a physio myself, I was quite keen to get on top of it.
Treatment for cording included a series of exercises, laser therapy, massage therapy and self-massage techniques to assist with my range of movement, but the strength I once knew will be slow to return, if it returns at all.
Six weeks after surgery, I then underwent a period of radiation to my left side, tracking up towards the neck area as well.
Managing my condition today
Fast forward 12 months and whilst I am in good health, I recently made the decision to have a mastectomy on my right side as well. This was a really important decision for me, and not one I took lightly. However, I feel it helped me to regain control of some of the ‘unknowns’ and enable me to live presently in each day.
I have never been the sort of person to spend time thinking about the ‘what if’s’, so electing to have the second mastectomy has helped me to move forward.
With my background, I know that I am lucky to understand the science behind what helps the body to recover. I believe in the power of exercise and I was lucky to be able to maintain a good level of physical activity throughout treatment, which in turn, helped with the side effects of chemo.
The cording I developed following my first mastectomy has meant I have had to change the way I work as a physio, as I am unable to bear strong weight in my arms.
I am currently developing a range of exercise videos specifically designed for women following breast surgery, called Studio B Health and Wellness Coaching. These videos include coping strategies I learnt throughout my journey and are designed to help other women understand and utilise the power of exercise throughout theirs.
Again, I am lucky that health and wellness has been a big part of my life, from my training as an athlete to my work as a physio, but I understand that is not the case for all.
For people who might not be as medically minded, I would still encourage you to find a clinical support team you can trust and ask for credible resources. The research I did early on proved invaluable, as I was then able to make quick decisions about treatment and next steps. I also feel it’s really important to arm yourself with information about what to expect post treatment and surgery, as this helped me to understand and manage some of the side effects I encountered, like cording.
Message of hope:
I hope that Studio B will enable women of all backgrounds to have a positive relationship with their body and exercise post-surgery, as I truly believe that movement is medicine.
Anything is possible. Remember that even after the worst storms, the sun will shine again. Negative thoughts can be a slippery slope, so try and maintain a positive mindset, introducing techniques like meditation, exercise and eating well to complement your chosen treatment path.