A Breast Cancer Foundation report released today, “I’m still here”: Insights into living – and dying – with Advanced Breast Cancer in New Zealand, calls for a change of attitude and better access to diagnostic tests, chemotherapy, drugs and clinical trials for women with advanced breast cancer. The report is the result of three studies commissioned by the Foundation including a comprehensive analysis of the advanced breast cancer data from the Breast Cancer Foundation National Register.

It found that the average survival for a Kiwi patient with advanced breast cancer (ABC) was just 16 months, compared with two to three years, or more, in countries like Australia, Germany and France. And the five-year survival rate for Māori was ‘abysmal’ at just five per cent, compared with 15 per cent for non-Māori.

The Foundation’s research manager Adele Gautier said New Zealand was world class at treating early breast cancer, but the data analysis had sadly shown the same couldn’t be said for New Zealanders whose breast cancer had spread, including being given a lower priority for chemotherapy than early breast cancer patients, and despite being at higher risk of their cancer progressing faster.

Breast cancer is New Zealand women’s most common cancer with each year about 3300 New Zealand women diagnosed with breast cancer. About 300 women a year are told they have ABC – also called secondary, stage 4 or metastatic breast cancer.

Just under a quarter (23 per cent) of the 300 women told they have advanced breast cancer will be hearing they have breast cancer for the first time. The majority of the women though will be having a recurrence – on average about 30 months after they were first diagnosed with breast cancer (depending on which of the five sub-types of breast cancer they have).

Breast cancer has one of highest survival rates if detected early – with 92 per cent of women whose breast cancer is detected by a regular mammogram surviving 10 years or more and 75 per cent if the first sign is a breast lump. But it is also the third most common cause of premature death in Kiwi women (after heart disease and stroke) with about 600 deaths a year.

The Chair of Breast Cancer Foundation NZ’s medical advisory committee, Dr Reena Ramsaroop, says the report – which includes a survey of 102 people living with ABC and interviews with 24 oncologists, palliative care specialists and nurse specialists – is vital new information for the medical community.

The report calls for a change in attitude to diagnosing and treating ABC including shifting the conversation to an emphasis on long-term survival and providing women with ABC the same ‘co-ordinated multidisciplinary care that had achieved so much in early breast cancer’.

The Breast Cancer Aotearoa Coalition (BCAC) chair Libby Burgess said it was stunned at the number of people with ABC who received no hormone treatment or chemotherapy, let alone targeted therapy.

“This is absolutely not good enough,” said Burgess. “There needs to be continued treatment as metastatic breast cancer advances, and a toolkit of options for treatment. Healthcare professionals report to us they are frustrated they can’t give their patients the best treatments to keep them thriving.”

“Key medicines BCAC hopes will be funded as soon as possible include Kadcyla, Ibrance, Faslodex, Abraxane, Affinitor and Kisqali,” she said. “We also believe Perjeta should be funded for all who need it, not just for those who meet the current criteria.”

Other I’m still here report findings include:

  • Medical professionals report access to diagnostic tests to confirm advanced breast cancer (ABC) can be slow, potentially limiting treatment options and reducing length of survival.
  • Chemo suite often give ABC patients a lower priority for chemotherapy than early breast cancer patients despite being at higher risk of their cancer progressing faster.
  • Too many patients receive no systematic treatments (55-72% given no chemotherapy depending on region)
  • Inability to manage ongoing physical and emotional symptoms is the number one negative impact on quality of life for people with ABC – only a third have good control over their symptoms
  • Health professionals feel they don’t have enough time with their patients, forcing them to pick and choose their conversations –including the range of treatments.
  • One quarter of patients do not believe their medical team is doing all they can to help keep them alive and give them a good quality of life.
  • Five year survival from ABC has increased in New Zealand over past decade but is still considerably shorter than comparable countries
  • Healthcare professionals expressed a lack of awareness of or adherence to guidelines for treatment of ABC
  • Three-quarters of people with ABC have had a decline in household finances; nearly half say their situation is “a lot worse”.

Recommendations:

  • Every ABC patient to be discussed in a multi-disciplinary (MDT) meeting.
  • All patient should be offered systematic therapy/treatment for ABC.
  • Equal access to chemotherapy.
  • Clinical trials should be considered as a first-line treatment option for all ABC patients
  • New drugs should be made available but also wider access to existing funded drugs.
  • Free GP visits and prescriptions for ABC patients.
  • Anyone who has had early breast cancer should be fast-tracked for diagnostic imaging when presenting symptoms of metastasis.
  • Biopsy of accessible metastases to be routine.
  • Schedule longer appointments for metastatic patients to enable symptoms to be dealt with fully.

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