My name is Anita and I’m fighting a tough battle with lung cancer. I am 44 years old, married with two beautiful boys aged 6 and 10. An accountant by profession working 1 day a week, fit healthy and have never been a smoker. I eat well and exercise daily to keep my body and mind in good working order.
I was diagnosed with Non Small Cell Lung Cancer (NSCLC), Adenocarcinoma, stage 3a in January 2014. At the time of diagnosis they found a 4cm tumour on my right lung and cancer in a few lymph nodes. The tumour is inoperable.
It all began with a persistent cough that was treated with several cycles of antibiotics lasting about a year. During that year I had numerous blood tests, x-rays and sputum tests. I also started working as a tutor at a university so my hoarse voice was put down to increased use. Other symptoms I had over the years were attributed to thyroid issues, a hoarse throat and exhaustion. I decided to get off the antibiotics roller coaster. It was only a minor but persistent cough with very small amounts of phlegm every now and then.
We moved to Brisbane at the beginning of 2013. Same persistent cough, same symptoms, same tests with inconclusive results. It was around this time that I was getting a sharp pain under my right rib. I thought perhaps I had pulled a muscle while coughing at night. The pain subsided over 3 or so weeks. Not long after that I got a few sharp pains in the middle of my chest. I had an ECG and a cardio stress test, results suggested stress.
In November 2013, I started getting very fine streaks of blood in my phlegm. The GP sent me to an ENT specialist, who then sent me for a CT scan. I delayed the CT scan for a whole month because I was too busy and did not think a cough warranted too much stress. Little did I know! I started getting the pain back under my ribs so thought it was time to get CT scan done. That was the week before Christmas. On the 30th of December I was celebrating my sister’s birthday when I got a call from the ENT specialist. A 4cm lump in the right side of my chest was detected and blood tests along with a PET scan were required as soon as possible.
The PET scan produced bad news. They then did a bronchoscope, samples came back as stage 3a, non-small cell carcinoma (Adenocarcinoma). I never thought I was a candidate for lung cancer.
Our family have been an active part of Relay for Life (Cancer Council WA) since 2005, before my diagnosis. I was often questioned about my involvement. I guess I truly believed if I helped patients and their families, karma would dictate that this would never happen to me. This year will be our 10th Relay for Life.
My treatment journey started with chemo (Cisplatin and Paclitaxol) for 9 weeks. This was followed by 40 radiation sessions over 8 weeks, combined with chemo (Etoposide and Cisplatin). Unfortunately there was no significant improvement resulting from my treatments.
I had another broncoscopy to get more tissue sample for testing. Good news, I tested positive to Anaplastic Lymphoma Kinase (ALK) fusion gene. It’s a rare gene only found in 3-7% of lung cancers. This has opened up options of target therapy treatments for me, in particular Crizotinib. I started taking Crizotinib at a cost to me of $7,500 per month (60 tablets). Crizotinib is not listed on PBS and I have been unsuccessful in accessing the drug on compassionate grounds. Mum and Dad have paid for my first month and friends are fundraising to help me pay for subsequent months. The support I have from family and friends is overwhelming. It’s a tough journey but I’m a fighter and believe with access to the most current medication I will live many more years than expected and enjoy watching my 2 boys grow into beautiful young men.
My main focus at the moment is pushing to have access to Crizotinib at an affordable price through the PBS system for both myself and other ALK positive lung cancer survivors.