A Breast Cancer Foundation NZ initiative aiming to help the 400 Kiwi women diagnosed with advanced breast cancer (ABC) a year could be rolled out nationally - and even around the world.
The ABC Pro pilot began in 2021 after a Breast Cancer Foundation report, called 'I'm still here', discovered many patients struggle to manage symptoms, reducing their quality of life and potentially their survival.
The programme, run in conjunction with Waikato Hospital, is improving symptoms and quality of life in patients living with advanced breast cancer and has already helped some women by picking up progression of their disease earlier.
Tokoroa's Bridget Gage has been part of the ABC Pro pilot programme since 2021.
She is among those sent a weekly online checklist, with common symptoms and side effects of advanced breast cancer (ABC) or related to treatments.
The mother of two daughters lost her husband Darryl to liver cancer, and found out 18 months later she had breast cancer.
By December 2020, she learned it had advanced and had spread into her liver.
"When you hear the words 'palliative' it's scary. It was almost a sick joke, the fact that it was in my liver as well, like it was for Darryl," Gage told Newshub.
"It was a real kicker, just a real kicker."
If a pattern emerges or a symptom reaches a designated threshold it triggers an alert with specialist breast nurse Donna Alexander who picks up the phone to understand what's changed.
"I think it gives patients more control living with what ABC is, and it gives them autonomy. It really puts the patient first and considers what is at the forefront for them and their family that week."
Alexander said the questionnaire is "not just about the physical symptoms. It's about their overall well-being, such as feelings around uncertainties of test results, uncertainty about their future, anxiety and ABC's impact on finances and on their wider whānau."
ABC Pro lead oncologist Dr Marion Kuper of Waikato Hospital told Newshub they've developed a tool "so that symptoms are addressed in a standardised way with solutions that the nurse can offer immediately".
Solutions that might mean medication needs changing, scans need ordering, or blood tests need chasing.
Gage said one week she was concerned she had a very sore arm, and "I thought my cancer had progressed into my bones" but Alexander quickly ascertained it was not a concern, and put her in contact with the NZ Cancer Society for discounted massages.
"I feel like somebody cares, I am not just a number, you know, someone who has X amount of years or months. And if something does change, I have the support there straight away. I don't have to wait three months."
Alexander said interim results suggest acute hospital admissions are reduced.
"We are seeing they are triggering less for symptoms because we are able to get that early intervention. It also helps us streamline care in that the oncology team have a heads-up if a patient is coming in. It gets them thinking: what else is going on?"
During the pilot programme, 38 women with advanced breast cancer were assessed for their quality of life at the beginning, the three-month mark, and six-month mark.
The study showed a significant improvement in their social, emotional, and cognitive functioning, as well as an improvement in their fatigue, insomnia, appetite and constipation.
With the weekly online checklist patients send in, Dr Kuper knows "exactly what happened week by week so I can have more focussed discussions with patients about their symptoms and what affects their quality of life".
She's just returned from Portugal where she presented the interim findings to an Advanced Breast Cancer conference.
Dr Kuper said this patient-centred service should become standard of care in the management of people with advanced breast cancer. Other oncology centres in New Zealand are invited to set to up this service with the support of the NZ Breast Cancer Foundation Two other centres in Wellington and Sydney have now joined.
"I think it should be developed and rolled out to other cancers and rolled out to other chronic conditions."
Gage is now back doing triathlons and "feeling great" despite her advanced breast cancer diagnosis.
She hopes more New Zealand patients like her will get the chance to use the ABC Pro weekly online feedback system.
She believes it has improved her quality of life because "Donna is interested in keeping me as well as I can be with this shitty disease".
"I so hope it gets around all the hospitals in NZ. That would be amazing."
