“I don’t have any illusion about my life span, but that doesn’t stop me from treating each day as a day full of potential.”
Where was I when lung cancer struck me? I had just got awarded an academic title by University of Sydney as an Associate Professor. I was busy working full time at Westmead Hospital as a gastroenterologist and a specialist in addiction medicine. I was serving as the Director of Drug Health (a Drug and Alcohol service) at Western Sydney Local Health District, that draws from a catchment of 850,000 people and managing over 100 staff. I was leading a research team working both in the lab and in patient care with clinical trials. I had a private practice.
I felt like I was just reaching a point where I could give back to the community. My husband, technically my wife, was looking after our three kids, but financially dependent on me. We had just started a medical device company, driven my quest to bring solutions to my patients. We were both excited by a project that links us to the innovation community and that both of us would be able to contribute equally in our expertise.
This was where I was, when diagnosed with lung cancer in February 2017, after months of coughing. I assumed the cough was asthma, never suspecting that this would happen to me. At 49, I was relatively young. I never smoked and neither did my family. I was falsely reassured by a normal X-ray just three months prior. Then I received a phone call that changed my life.
“My compulsion to tell people I have never smoked and was born into a family of never-smokers comes from an entrenched community stigma around lung cancer being brought on by people themselves.”
I was found to have stage IV right lung cancer with metastases to distant lymph nodes, bone and liver. The histology showed poorly differentiated squamous cell carcinoma. It had no evidence of mutations that would enable me access to targeted therapy. The negative markers also pointed to it being a smoking related cancer.
“Since being diagnosed with lung cancer, I’ve found myself sitting in the same room with people who smoke, who used to smoke and who have never smoked. At the end of the day, we all have lung cancer and we need to be treated the same way.”
Since knowing my diagnosis it has caused me to pause a bit but not for long. I have gone from preparing to die to living again though my prognosis is guarded (3-12 months was what I was given). I do find myself grieving over not being around long enough to see my children grow up. I have younger sisters with mental illness who depend on me. My oncologist and palliative care physician have been wonderful and have made it possible for me to travel. The nurses at the Private Infusion Centre at Westmead are most supportive. Getting to my 50th birthday became a priority on my bucket list.
Now that I have turned 50 I am faced with the fact that because I have failed immunotherapy, my options are limited when I complete the present course of chemotherapy. There needs to be further research in lung cancer.
Despite not feeling any stigma regarding my diagnosis with my colleagues and friends, I feel it at the community level. Certainly, running a fundraising dinner for lung cancer would not bring on the same community support as for breast cancer. Having spent half my life advising people how to quit alcohol and drugs, including smoking, I now feel like I have to explain to people that my lung cancer is not brought on by me smoking. The stigma for lung cancer needs to be lifted.
“I think the public needs to be sympathetic to people with lung disease. It doesn’t matter how you got there. You have the condition. You need treatment, you should have equitable access to treatment.”