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Living with Advanced Lung Cancer

Reflections or Lessons Learned

Written By Jo Silva (and behalf of, and spouse of Jay, living with Stage 4 lung cancer)

My husband Jay was diagnosed with stage 4 lung cancer in 2011 at age 39, and this year we are excited to be celebrating his six year survivorship anniversary – a survival that was not remotely contemplated in 2011. Since Jay’s diagnosis we have learnt a lot about lung cancer, the first few years were confronting. The reality was a poor prognosis, lack of local and readily-accessible resources and support as well as a cancer surrounded with negative stigma. It was something we wanted to be a part of changing, and we have been comforted and pleased with the increase of support, awareness and advocacy for those affected by lung cancer. Although a great deal more needs to be achieved, we recognise and applaud the positive changes we have seen the last few years.

We continue to feel passionate about promoting lung cancer as a disease that requires more research funding, more awareness, and more support services. It inspires us to see the number of “Shine A Light” events increasing across Australia, along with numbers of people attending these events. Attending Shine A Light events are very special to us and we usually attend several in the month of November. For us, it is a time where those affected by lung cancer can come together with the common goal of raising awareness for this disease. It is refreshing to have a sense of unity at these events, something that we had found more difficult in the past to find within the lung cancer community. The introduction of the Lung Care Support Nurse through LFA has been particularly beneficial for us, providing access to clinical support nationally within Australia.

Disease stigma was something that impacted us with immense frustration and intimidation and certainly acted as barrier to us initially seeking support. In fact, I still recall the moment when I had enough courage to say ‘my husband has lung cancer’ instead of my usual comfort zone statement, ‘my husband has cancer.’

Six years on, and we are proud and passionate about being involved with, and raising awareness for lung cancer. The negative image is no longer a source of anxiety, but a source of determination and opportunity to create change. Every person affected by cancer, no matter where it grows, deserves compassion, empathy, unity and support, as well as funding for research and awareness campaigns.

The last six years has been eventful with Jay’s lung cancer being an insistent and defiant disease to manage and control. He has required constant treatment, multiple chemotherapy and radiation regimens, targeted therapies and has also been involved in a clinical trial. Despite the ongoing treatment demands and side effects, we remain incredibly thankful that they have gifted him with a longevity we didn’t initially expect.

We attribute his long term survival to recent discoveries made in lung cancer. Jay’s type of lung cancer (ALK lung cancer) is rare, and occurs in two to seven per cent of lung cancers. This unique type of lung cancer was only discovered in 2007, just four years before his diagnosis. In being able to test his tumour for this subtype, we were able to access targeted therapy which is more specific medication that treats only a subtype of lung cancer

Seeing these types of scientific advances unfold certainly inspires us. We have experienced firsthand just how pivotal is it to have treatments that are not only effective but readily available. Jay’s story highlights that lung cancer research, and scientific advances can make a difference in being able to survive this disease for long periods. We hold out hope each and every day that researchers will make breakthroughs that can improve outcomes in the way of early detection and treatment for our entire lung cancer community.

 

Link to our 6 year anniversary video: https://youtu.be/R7P2QofFxeA