Robin’s story:
“Te Rēhita is helping to change the story of breast cancer in Aotearoa”
Robin was diagnosed with breast cancer in 2001 when she was 48 years old. For the past 10 years, she has been the consumer representative on Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register’s Clinical Advisory Group (CAG), helping to govern the vital work of the Register.
My breast cancer diagnosis came completely out of the blue after a screening mammogram I had when I was 48. It was unusual to be having mammograms at that age, it wasn’t until 2004 that the Government lowered the eligibility age from 50 to 45. But I’d had two aunts who had breast cancer in their mid-40s, so was encouraged by my GP to start screening early.
Within six weeks of learning I had breast cancer, I had a mastectomy with reconstruction, followed by three months of chemotherapy and four months of radiation treatment.
My oncologist, Dr Vernon Harvey, was integral to how I came to be on the CAG. For me, being the consumer representative on the CAG means speaking up for people who’ve been through breast cancer or who have lost their lives to it. The voice of the patient is crucial, so my role as a patient advocate is important on Te Rēhita.
There’s an incredible amount of data held in Te Rēhita – it’s a very powerful research tool used by clinicians and scientists to really dig deep into how to make improvements in care – both here in Aotearoa and internationally, and to ensure people live long and well after breast cancer.
As a truly national database, Te Rēhita represents the whole country, meaning we can challenge inequities faced by patients. This might include rural versus urban challenges, or the varying needs of our multicultural society.
This incredibly rich resource has contributed to real-world change. Soon, women aged between 70 and 74 will be able to keep having free mammograms – Te Rēhita has helped to make the case for why this is so needed through the information it holds on diagnosis, treatment and survival of women in this age group.
Breast cancer has changed since I was diagnosed. Now there are more suitable drugs and surgical options, and less intrusive treatments. This makes a difference – not just for survival, but also for quality of life. But there are still many gaps in knowledge and practice and that’s why I remain on the CAG, because there’s still work to be done.
The dream of zero deaths… well, I am 23 years cancer-free and counting. I’ll keep contributing in whatever way I can to make things better in the hopes that my two daughters, and now a granddaughter, can look ahead with confidence. Te Rēhita is helping to change the story of breast cancer in Aotearoa.
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