Beyond the pink ribbons, the TV advertisements encouraging early detection and the fundraising events to raise money for breast cancer are those, both women and men, who are living with metastatic breast cancer – advanced cancer which has spread through the body.
"We’re the ones nobody wants to think about," says Tokoroa woman and BCAC Committee member Gillian Wintrup. The 41-year-old was first diagnosed with HER2-positive breast cancer in 2008. After receiving chemotherapy, radiotherapy, a full mastectomy and then a course of Herceptin, she thought she was better. Fast forward several years and a pain in her shoulder prompts her to see her GP. Following a CT scan it is discovered the cancer has metastacised and spread to her bones. "I never imagined it would be cancer again. It was a bolt out of the blue."
Ms Wintrup says the way Breast Cancer Awareness Month focuses mostly on early detection leaves her feeling left out of the equation. "I would like us to have more of a presence, perhaps in the media and also in the public health system. I have met a number of nurses who don’t know what metastatic breast cancer is and I have to explain it to them."
A lack of awareness has also been an issue for another metastatic breast cancer patient, but for different reasons. Masterton’s Max Croskery (54) was diagnosed with secondary breast cancer last year. As one of approximately 20 men in NZ who are diagnosed with breast cancer every year, and an even smaller number with metastatic breast cancer, it comes with its own set of specific challenges, he says. Among those is a lack of awareness among GPs that breast cancer also happens to men. "I was being treated with antibiotics for a long time – getting a mammogram was the last thing they thought of."
Finding out about ‘Sweet Louise’ – an organization offering support and advice to those with secondary breast cancer – helped connect Mr Croskery with another man in NZ with breast cancer. "That really helped." He also says being able to keep working has saved him. "If I had quit my job I would have gone crazy. My employers have been fantastic – many times I went to resign but they wouldn’t accept my resignation and now I am so grateful for that."
A Facebook group called MetavivorsNZ which was set up in March 2014 by BCis also helping New Zealanders living with secondary breast cancer to connect and share experiences and to advocate for better treatment and care.
The inspiration for MetavivorsNZ came from the United States based non-profit organization called Metavivor. Founder and director Dian Corneliussen-James says the main focus of the organization (based in Maryland, USA) is research. "We need a lot more research in this area. Up until now, most of the research has been focused on prevention or the early stages of primary breast cancer."
In the US, it is estimated that 30% of breast cancer survivors will go on to be diagnosed with metastatic breast cancer. Ms Corneliussen-James says often people are fooled into thinking that when they recover from primary breast cancer they are cured. "Doctors say after 5 years they are cured but that’s not correct. They can metastacise in 10, 20 or even 30 years time and one in 3 will." She says the main aim is longevity with a good quality of life for those with metastatic breast cancer.
For those living with metastatic breast cancer, it’s not necessarily a death sentence, says Ms Wintrup. "We’re living with breast cancer. We’re not dying of it. There is always hope."
To join BCAC’s Metavivors Facebook group please email: bcac@breastcancer.org.nz
To connect with the Louise Perkins foundation: http://www.sweetlouise.co.nz
For more information about secondary breast cancer: http://www.breastcancer.org.nz/Support/Secondary
13th October 2014
