Knowledge is Power

Knowledge is Power

Comprehensive regional breast cancer registers are proving a valuable tool to doctors and patients alike

On 8 April, 2011 the New Zealand Breast Cancer Foundation (NZBCF) and the Wellington Regional Breast Cancer Trust announced the opening of the fourth regional Breast Cancer Register in Wellington. As Mr Burton King, Breast and General Surgeon says, “The Wellington Register will be an important aspect of care for patients in the Wellington region. We will use the data from the Register to improve our treatment and follow-up regimes, as well as overall breast cancer outcomes”.
What are New Zealand’s Breast Cancer Registers?
Since 2000, NZBCF has provided significant funding – close to $1.5 million – to the development and ongoing management of four regional New Zealand Breast Cancer Registers: Auckland, Waikato, Christchurch and Wellington.1
These Registers commenced collecting
data on:
• 1 June, 2000 - Auckland
• 1 January, 2005 - Waikato
• 15 June, 2009 - Christchurch
• 1 January, 2010 – Wellington
The Registers, collectively known as the Breast Cancer Knowledge Base, are large computerised databases which collect and hold detailed clinical, pathological, treatment and outcome data, along with patient information on age, gender and ethnicity. Confidentiality of the Registers’ data is maintained at all times and only de-identified data is ever extracted and released from the Registers.
The greater level of detail in the four Registers’ data compared with the minimal amount of breast cancer data collected in the National Cancer Registry at the Ministry of Health in Wellington, makes the Breast Cancer Registers extremely powerful tools for understanding the nature of breast cancer in New Zealand (NZ), its impact on different sectors of the NZ population, as well as treatment interventions and their impacts on survival outcomes.
Dr Belinda Scott, Breast Surgeon and Chair of NZBCF’s Medical Advisory Committee is a passionate advocate for the Registers. She says, “Having access to comprehensive information about the different ethnic characteristics of breast cancer, the varying types of treatment NZ women undergo and the rates of cancer recurrence will definitely help to improve the treatment of women who have not yet been diagnosed with breast cancer in NZ.”
With the breast cancer patient consent rate around 95 percent for the four regional Registers, Dr Scott highlights, “All New Zealanders owe a debt of gratitude to the NZ women who have consented to having their own breast cancer data captured so that we can learn more about this dreadful disease, which affects so many mothers, sisters, wives and daughters. It is so important to have our own NZ breast cancer statistics from our own women so as to improve the survival outcomes of our women from breast cancer.”                
Breast Cancer in New Zealand Today
Breast cancer is a significant health problem in NZ. It is the most common cancer occurring in NZ women accounting for just over one quarter of all new cancer registrations per year. Every year in NZ over 2,700 women are diagnosed with breast cancer (and around 20 men).2
Around 650 women will die every year: almost two women every day of every week. Although many NZ women survive their breast cancer, and there have been major advances in breast cancer treatments over the past 20 years, women in NZ still face at least a 20%3 greater chance of dying from breast cancer compared with women in Australia and other developed countries. In NZ’s ethnically diverse society this raises a number of very important questions:
• Do Maori women compared to non-Maori women (Pacific Island, Asian, NZ European women) present with more aggressive, fast-growing breast cancers?
• Does the interval between breast cancer surgery and the start of radiotherapy  impact on the breast cancer recurrence rate?
• Why do Maori, Pacific Island and Asian women have poorer breast cancer survival outcomes compared with NZ European women? What are the causes for this?
• Are we finding breast cancers at a later stage than other countries?
• Is surgical management of women with breast cancer different to other countries?
• Do women respond differently to the drugs currently used in treating breast cancer?
These are the types of questions that the regional Breast Cancer Registers’ data can potentially provide answers to, and have done so already with some questions.
Some of the data extracted and analysed from the Registers’ do not always provide complete answers to every question, but trends and patterns are often found that give direction and stimulate future breast cancer research in NZ.
Launch of a New Zealand Breast Cancer Foundation Maori DVD
Some recent findings, as a result of extraction and analysis of data from the Auckland and Waikato Registers, show that Maori and Pacific Island women compared to NZ European women:
• Are less likely to have their breast cancers found by breast screening (lump found initially/late detection)
• Have lower breast screening rates
• Have a higher incidence of breast cancer, significant in young women <45 years
• Present with larger breast cancers (late detection/poorer prognosis)
• Have more positive lymph nodes in the armpit (late detection/poorer prognosis)
• Have higher grade breast cancers (fast-growing), significant in young women <45 years
• Have significantly higher HER2 positivity (poorer prognosis)
• Are significantly more likely to die of their breast cancer.

This year, the Foundation took ACTION due to the Registers’ above findings – and developed, as well as funded, a Maori DVD with the primary purpose of encouraging Maori women to go for screening mammograms – as they DO save lives. Also, the DVD addresses the breast cancer treatment pathway in a manner appropriate for Maori women. The launch of the DVD was in May this year with distribution throughout NZ.
As Dr Melanie Rees, Radiologist and member of the NZBCF’s Medical Advisory Committee explains, “The Registers are highly valuable assets as their findings – indirectly – guide us on the development of appropriate breast cancer educational resources. This was demonstrated when a patient refused all breast cancer treatment and care. However, on viewing the Maori DVD she changed her mind and agreed to treatment by saying, ever so warmly, that she was now looking forward to starting her breast cancer journey. This gives measurable proof – through the DVD - of how the Registers are making in-roads into improving the management of NZ women diagnosed with breast cancer”.
Due to the resounding success of the Maori DVD, the Foundation is now in the planning phase of the development of a DVD for Pacific Island women.
National Roll-Out of the Regional Breast Cancer Registers
There is a need for the NZ Government to provide funding to roll-out the regional Registers nationally; the expansion would be to the two regions: Central North Island and Southland. Also, a further need is for the government to provide on-going financial support to ensure the long-term viability of these immensely valuable Registers. The four regional Registers have been primarily funded by the NZBCF for the past 11 Years – presently close to 87%.
Nationwide Registers would provide a national view of breast cancer management and survival outcomes, as well as provide information to shape NZ’s future breast cancer service delivery effectively. Most importantly, nationwide Registers will enable regional, national and international comparisons in breast cancer management and survival outcomes; this would ensure NZ women receive world-class treatment and care, and as a result fewer NZ women would lose their lives to this disease.
For detailed information on The Registers’ recent findings go to the NZBCF website: www.nzbcf.org.nz/index.php/what-we-do/breast-cancer-patient-registers
For information on NZBCF’s Maori DVD and Pacific Island DVD, phone 09 304 0766
References:
The New Zealand Breast Cancer Foundation’s website: www.nzbcf.org.nz/index.php/what-we-do/breast-cancer-patient-registersThe Auckland Breast Cancer Registerwww.adhb.govt.nz/AucklandBreastCancerRegister/The Waikato Breast Cancer Register www.wbct.org.nz/About+Us/wbcr.html
Ministry of Health,  ‘Cancer: New registrations and deaths 2008. Wellington: Ministry of Health’, 2011, www.moh.govt.nz/moh.nsf/indexmh/cancer-new-registrations-deaths-2008
Armstrong, W., Borman, B., ‘Breast Cancer in New Zealand: Trends, patterns and data quality’, New Zealand Medical Journal, 109,1996, 221-224, and Skegg, D.C.G., McCredie MRE, ‘Comparison of cancer mortality and incidence in New Zealand and Australia’, New Zealand Medical Journal, 115, 21 June, 2002,1156-205.


Valerie Pennick is a Research Analyst for the NZBCF.