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Advanced breast cancer in New Zealand

Advanced breast cancer

This year, about 350 New Zealanders will be told they have advanced breast cancer (ABC) – also called secondary, or Stage Four, or metastatic breast cancer. This is breast cancer that has spread to another part of the body and is incurable.

Most of those 350 people – mainly women, but also a few men – will do everything in their power to stay alive, to stay with their families for as long as possible.

They’ll become part of the constantly changing population of Kiwis living with ABC. Their struggle will take place out of the spotlight that celebrates the “success stories” of early breast cancer survival. Many of them will end up feeling unseen, forgotten, isolated. They’ll feel that the health system has turned its back on them.

"I'm Still Here"

A comprehensive report offering insights into living and dying with advanced breast cancer in New Zealand

In September 2018, Breast Cancer Foundation published “I’m Still Here”, a report offering insight into what’s really happening in ABC care. The report combines the output of three studies commissioned by BCFNZ: a survey of medical professionals; a patient survey; and the first statistical analysis of data about advanced breast cancer treatment and survival from the Breast Cancer Foundation National Register.

We learned that New Zealanders with ABC die faster than people in other countries, that many of them get less treatment, and that the health system disadvantages them in many ways. This needs to change, right now.

Following the release of our report, we invited Dr Fatima Cardoso, a world expert in advanced breast cancer, to share her knowledge in New Zealand. She spoke the relationship patients need to have with their oncologist and how they can take a front seat in their ABC care.

Read our full report below.

Download Full Report Download Executive Summary

You can see BCFNZ's medical committee chair and research manager talk about the report in the video below:

Submissions to the Health Select Committee

While Dr. Fatima Cardoso was in New Zealand she also spoke to patients, doctors and members of the government. We're grateful for the insights she provided and thankful for the submission she made to the Health Select Committee regarding funding for important drugs that could improve and extend the lives of Kiwis living with ABC.

Read the full submission by Dr. Fatima Cardoso.

Following her submission, Breast Cancer Foundation NZ also helped secure public support and advocated to the government that Kiwi patients with advanced breast cancer need Pharmac funding for all the drugs listed in the European ESMO guidelines for the treatment of their disease.

Read the submission we made to the Health Select Committee re unfunded drugs.

Dr Fatima Cardoso presentations

Video

From passenger to co-driver: taking a front seat in your ABC care

From passenger to co-driver: taking a front seat in your ABC care

In January 2019, Dr Fatima Cardoso, a world expert on advanced breast cancer (ABC), addressed ABC patients and their supporters at a lunchtime seminar in Auckland.

What relationship should I have with my oncologist? What should I know about lines of treatment, and is there a place for complementary therapies? What factors can help my quality of life?

ABC patient interview with Dr Cardoso

Video

Dr Fatima Cardoso ABC patient interview

During her visit to New Zealand, world ABC expert Dr Fatima Cardoso was also interviewed by Jane, a Kiwi living with advanced breast cancer. A recording and transcript of this interview are now available.

You can read the transcript here:

Dr Cardoso transcript FINAL.pdf

Feedback on Pharmac decisions

Breast Cancer Foundation NZ recently gave feedback to Pharmac on their proposed funding of palbociclib (Ibrance) for advanced breast cancer. The Foundation is looking forward to seeing palbociclib made available and securing maximum access for as many patients as possible. Read our feedback below:

Petitioning for free GP visits for those with ABC

Our report, I’m still here”, Insights into living – and dying – with Advanced Breast Cancer in New Zealand, revealed a sorry state of play for those with advanced breast cancer. Patients struggle to manage their symptoms, reducing their quality of life and potentially shortening their survival, and face a huge financial burden, which is with them for the rest of their lives. The cost of GP visits becomes a major financial burden when patients no longer have regular hospital appointments; inability to afford appointments means patients don’t get the symptom relief they need.

Breast Cancer Foundation NZ presented a petition calling for free GP visits for those with advanced breast cancer, which is currently with the Health Select Committee.

Talk to others who understand what you’re going through

Join mybc, our online breast cancer community.