Lung Cancer Patient Ambassador
My name is Kate Hodges. I am 48 years old, married to Andy, and I have two children; Emily, aged 12 and Tom, aged 10. I live in the beautiful mountain spa village of Hanmer Springs in the middle of the South Island, New Zealand. Before my diagnosis with lung cancer I worked part-time as a primary school Teacher Aide, and I took care of the administration for the Motel business we own in Fox Glacier. I have always been fit and healthy, and I am a non-smoker.
Early in June 2016 I felt a small lump in my neck and went to my local GP. On 13th June I received the results of a biopsy and was shocked to be given a diagnosis of metastatic Adenocarcinoma, with the likely origin being pulmonary. A week later, after a CT scan, my diagnosis of non-small cell, stage 4 lung cancer was confirmed. I was told pretty bluntly that there was no cure and the only treatment options were designed to control the cancer and to maintain the best possible quality of life.
My own internet research showed me the hard reality was there was an 85% chance I would be dead within 5 years. This was incredibly difficult to accept especially as the lump in my neck was my only symptom. Even after the diagnosis I felt well apart from the lump continuing to grow bigger. (Ironically, the only time I have felt unwell was from the side effects of the treatment drugs.)
On the upside, the particular mutations of my cancer (EGFR andT790M) mean it can be treated with new targeted drugs. I have been incredibly fortunate to become one of just a handful of New Zealanders to be given access to a promising new targeted drug, Osimertinib/Tagrisso. It is so new it has not yet been through New Zealand’s approval system, but I have been granted compassionate access by the drug company. (It would otherwise cost around $12,000 a month)
The even better news is that it has definitely shrunk the tumour in my neck and therefore we can assume it is also shrinking the other tumours in my body.
The bad news is that this drug will not work forever and the cancer will eventually overwhelm it, although it is unknown how long this will take. Right now there is no next step in my treatment plan, except palliative chemo.
As patients we need an organisation such as the Lung Foundation to represent us and to lobby as a unified group for better access to, and funding for, newly developed treatments. I want other people to have access to Osimertinib, and I want to have something more than palliative chemo when this stops working.
One of the things that has surprised and frustrated me is learning about the terrible inequalities in cancer funding and research. Lung cancer is New Zealand’s biggest cancer killer with more than 1600 kiwis dying every year, almost 5 a day, but there is an appalling lack of public awareness and support for lung cancer patients. It seems that due to the long held stigma of it being only a smoker’s disease it is very much the poor cousin in this respect. I have personally felt the stigma of this disease and am always having to justify that I am not and never have been a smoker. No one deserves this disease……not me…..not smokers. And anyone who gets it deserves the very best in treatment and support.
I have reached a point where I feel I am living with cancer, no longer dying of it. This makes life for me and my family much easier, and I am happy to be putting time and energy into doing what I can to see lung cancer become a treatable disease we can live with, rather than a terminal one.