ALK positive patient Alexandra tells her story …
My name is Alexandra and two and a half 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 requested a biopsy that confirmed my worst fears – non small cell adenocarcinoma of the lung. I’ll never 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 my 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 (or the middle section of the chest) 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 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 expertise of this team, combined with state of the art equipment meant that I could be offered definitive chemoradiation as potentially curative therapy. While I was informed 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 of health professionals never faltered, dealing with each side effect as it arose. Three months after treatment, and well on my way to recovery, I learnt that the pain had been worth it when follow up scans showed I had no evidence of disease.
Since that time I have continued to be followed closely, which has given me the opportunity to deal with things immediately they arise. 17 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. Since that time I have had no further treatment. I continue to be monitored closely, and have confidence in the ability of my clinical team to be able to deal with anything that arises in the future. I am also one of a small percentage of lung cancer patients whose cancer has a rare mutation known as ALK+ (anaplastic lymphoma kinase-positive). This means that I have available to me a targeted therapy in the form of a tablet that attacks only the cancer cells; unlike chemotherapy that destroys both healthy and cancerous cells alike. While not providing a cure, targeted therapies offer both time and quality of life, two commodities that are indescribably precious. Ongoing research into new treatments for lung cancer means targeted therapies, immunotherapy, and radiotherapy options are increasing all the time, which should bring hope to many more lung cancer patients.
When I was first diagnosed 2 ½ years ago, I thought my life was over. While cancer has put certain things on hold however, my life today is relatively normal. While fear of recurrence is a constant companion, I have learnt to live with it peacefully for much of the time. I have changed as a person, become less driven, more accepting, kinder to myself and truly appreciative of every moment I spend with my family and my young son. We really do only have the present moment, something I try to remember every day. 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. In my case it saved my life. Once you have your team, become your own best advocate. Learn about your disease, possible treatment options and things you can do to improve your prognosis. Above all else, never lose hope. My story shows you that sometimes outcomes can be much better than expected.