My name is Alexandra and three years ago my life was turned upside down. I was 31, the mother of a two-year-old, a clean eating runner who had never touched a cigarette – and I had lung cancer.
My diagnosis came after I found a small hard lymph node in my neck, above my collarbone. Despite having no other symptoms, and being advised to watch and wait, I pushed for a biopsy that confirmed my worst fears – non-small cell adenocarcinoma of the lung (NSCLC).
I can’t forget hearing the results; the fear and panic were overwhelming, and all I wanted to do was step out of my body and run. Within a few days I had CT and PET scan results that confirmed I had stage 3b lung cancer. My disease was small in volume but centrally located throughout the lymph nodes of my mediastinum (the space in the chest between lungs) and neck. My initial oncologist was sympathetic but pessimistic, believing chemotherapy was my best option of extending my life for a period of time without hope of long-term survival. This was unbearable, and when the option of seeking a second opinion was raised my family and I jumped at the chance.
It was at this time we were introduced to the Peter MacCallum Cancer Centre, and I was fortunate to be accepted as a patient. This decision meant moving from Queensland to Melbourne for some weeks, but luckily my incredibly supportive family all moved down with me so I could concentrate on getting well.
At Peter Mac I came under the care of world-class radiation and medical oncologists as well as a dedicated lung cancer nurse. The team, combined with state of the art equipment meant that I could be offered definitive chemo-radiation as a potentially curative therapy. While I was told that the treatment would be exceedingly harsh and may not cure me, I had everything to live for and accepted willingly. The next six weeks were as tough as I was told. I suffered debilitating nausea from the chemotherapy, and my entire oesophagus was badly burnt by the radiation treatment. My team never faltered however, dealing with each side effect as it arose. Three months after treatment, I learnt that the pain had been worth it when follow up scans showed I had no evidence of lung cancer.
Since that time I have continued to be followed closely, which has given me the opportunity to deal with things immediately as they arise. Seventeen months after treatment, a tiny amount of residual cancer was detected on a routine scan, and I again benefited from cutting edge medical therapy in the form of stereotactic radiotherapy. This time treatment was both rapid and free of side effects, and again put me into remission.
As a young, non-smoker, I have a relatively rare type of lung cancer mutation known as ALK+ (anaplastic lymphoma kinase) lung cancer. This is most commonly found in my demographic, and in recent years oral therapies have become available that target cancer cells expressing this mutation. Just recently I have again shown slight evidence of progression and have thus started taking the one of these oral medications.
Whilst not providing a cure, targeted therapies offer both time and quality of life, two commodities that are indescribably precious. I have been fortunate enough to have had no side effects from my medication and am able to continue my active lifestyle of bike riding, competitive horse riding and playing with my now six year old son.
While I am hopeful that my current treatment will provide benefits for years, I am also confident that further treatment options will be available when I need them. There have been more medications and therapies to treat lung cancer approved in the last four years than in the previous four decades which provides great hope to young people like me.
When I was first diagnosed I thought my life was over. While my life has forever changed, my ability to live normally, even with lung cancer, is a real blessing and something which would have been impossible even a few years ago.
For newly diagnosed lung cancer patients, I urge you to find a team that you feel comfortable with, and that you trust. This may not be the first team you encounter; a second opinion may be very important. Once you have your team, become your own best advocate. Learn about your disease, talk to your doctor about genetic testing, and explore all possible treatment options and things you can do to improve your prognosis. Above all else, never lose hope. My story shows you sometimes outcomes can be much better than expected.