This story was originally publised in 2016. Sadly Moana passed away in early 2017.
Moana Papa, a long-time committee member of the Breast Cancer Aotearoa Coalition (BCAC), talks about her secondary breast cancer diagnosis and how she continues to live her life as fully as she can while undergoing treatment for the disease.
Can you tell us about your initial breast cancer diagnosis and subsequent diagnosis of secondary breast cancer?
I was diagnosed with ER+ breast cancer in 2005 when I was 32 and working full time as a Careers Advisor at Tangaroa College in Otara - South Auckland. I considered myself to be too young for breast cancer then. Certainly from a breast screening point of view I was as I was well outside the screening age of 49 years old. For me, my life is divided into three parts - before cancer, after the first diagnosis and, the third part, living with incurable breast cancer (a terminal diagnosis). I was told the devastating news that I had incurable cancer in October 2014 after feeling unwell for more than a year.
What were your symptoms leading up to your secondary diagnosis?
I had severe pain in my bones particularly my back and my legs. I could barely raise my arms above my shoulders, it hurt me to move too much and more than anything I was perpetually tired. I attributed these symptoms to getting older but soon realised it was more than that. I went to my GP complaining of pain in my bones but was diagnosed with other ailments. That's one important life lesson I learnt - make sure you push for a clear diagnosis whenever you leave your doctor and when you don't get one keep pushing for tests to help clarify what you may have.
What sort of treatment are you currently having?
At the moment, I am receiving weekly intravenous infusions of a chemotherapy drug called Vinorelbine. This drug is effective in fighting advanced breast cancer and reducing solid tumours. I have quite a few tumours in my spine, chest and pelvic area and over the last few months the cancer has progressed to my liver and my pancreas.
You have been involved with BCAC for a number of years as well as other charity organisations – why did you get involved?
I've never been one to sit back and hope things will get better - I'm a "doer"! I could see that BCAC were "doers" too, a highly effective group. Members of BCAC have had personal experience of breast cancer so we know how it feels and we've gone through the health system. The kaupapa of BCAC is to provide a voice for those who have had a breast cancer diagnosis. As a person of Māori and Pacific Island heritage it's really important that we have a voice as breast cancer kills us at a disproportionate level.
For Māori women, we are 72% more likely to die from breast cancer than non-Māori! So I decided to help by working on a promotional video for the New Zealand Breast Cancer Foundation called "Woman to Woman - Wahine ki te Wahine". The video encourages woman to be breast aware and to seek medical advice if they notice any changes.
I've also worked with the incurable breast cancer Facebook group – Metavivors NZ. This is a closed group especially for those with Stage IV Breast Cancer. To raise the profile of the group in the public sphere, BCAC helped to create web videos of Metavivors (like myself) telling their own stories. I also have done some promotion work with the incurable breast cancer group Sweet Louise. I told my story about my diagnosis and how life changing this diagnosis has been. I got involved with all these groups because I wanted to make a difference and change the status quo.
What are you most proud of in relation to this work?
I can't choose any one of them because they have different purposes and audiences. The process I enjoyed the most was making the Wahine ki te Wahine DVD. We had a whole support network of Māori health and breast cancer workers helping us. We went to OMAC (Otara Music Art Centre) and sang Māori songs (waiata) to go along with the DVD. Even on set we felt nurtured by each other - the end result was a powerful DVD encouraging women to get to the doctor if they noticed any changes to their breasts.
Thinking about the future, what might help you?
Access to more medicines would definitely help me - without it I don't have a very long future. Some of these medicines can extend life for five-plus months. For a person like me that will allow me to see my son's 21st and enable me to get my affairs in order.
What would you say to those in government about access to medicines?
Please fund more medicines for advanced breast cancer. Our neighbour Australia is currently funding five more than us. I feel cheated that my family in Australia can get these medicines and here in my own country I cannot. We need a separate fund for cancer drugs and we need to increase the budget for it. The government wants to know how they can help Māori and Pasifika with breast cancer. Fund these medicines such as Keytruda and Kadcyla.
Is there anything you would say to others in a similar position to you? Any advice you would give them?
I would say to those with incurable breast cancer to enjoy your life - "Carpe diem" - Seize the day and live each day like it is your last. While you are living it, try to make positive change for those in your situation.
Please don't forget about those with incurable breast cancer, we want to contribute to society and we can do that if we are given the chance to. Please fund more cancer medicines so we can live.
17 Nov 2016