New digital tool helps women with breast cancer navigate the health system

The battle against breast cancer is set to enter the 21st century with the launch of the My Journey app, the first Australian digital guide to managing the cancer.

Exclusive: The battle against breast cancer will enter the 21st century this week with the launch of the first Australian digital guide to managing the cancer.

For two decades women have been issued with multiple standardised breast cancer pamphlets explaining how to deal with hair loss caused by chemotherapy, or how to preserve their fertility.

However, much of the information may be irrelevant to their personal situation and pamphlets can quickly become out of date.

On Wednesday, Breast Cancer Network Australia will unveil its new online digital My Journey app that will allow women to tailor the information they receive to their specific type of breast cancer including ductal cell carcinoma in situ, HER2 positive breast cancer or triple negative breast cancer.

Melbourne tour operator Monique Morton, pictured in Peru, has test-driven the new app.

The information for a newly diagnosed women will be very different to that supplied to a woman whose breast cancer has returned or metastasised.

“We know that it can be really overwhelming to be given lots of information that doesn’t relate to your own circumstances, and this is particularly true when someone has just been diagnosed with breast cancer and they’re feeling shocked and not in control,” said BCNA CEO Kirsten Pilatti.

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Monique Morton, with her fiance and stepson, was trying to get pregnant when she was diagnosed with cancer.

The My Journey online tool has been designed by breast cancer experts in collaboration with digital experts and people with a personal experience of breast cancer, and has been funded by Cancer Australia.

The online tool features videos of women talking about their experience of breast cancer and covers topics like hair loss, fertility preservation and even how to find a clinical trial.

Most importantly it includes crucial financial advice.

The 30-year-old, who has had her eggs harvested, says the app helped inform her about preserving her fertility.

A 2017 survey by BCNA found one in four women treated in private hospitals have out of pocket expenses greater than $21,000 in their first five years after diagnosis because Medicare and health fund rebates are inadequate.

Medical bills not covered by Medicare or health funds total more than $3700 on average for women using private health insurance — 10 times as high of those who go public.

The app aims to help women navigate the health system to minimise these costs.

“Say you are about to have radiation treatment, it will help make sure women understand they don’t have to pay $13,000 for private treatment. Even if they had surgery privately they are entitled to use the public hospital system for radiation,” BCNA CEO Kirtsen Pilatti said.

One in four women treated in private hospitals have out of pocket expenses greater than $21,000 in their first five years after breast cancer diagnosis.

The app will also give newly diagnosed women tips on the questions they should ask their doctor about surgery and how to get a clear picture of whether they will face out of pocket costs and how they can avoid them.

“There are public hospital options available and the app will help dispel the myth that there are waiting times at public hospital or myths that the public system is a worse option,” Ms Pilatti said.

To make the information user friendly a lot of the advice will be delivered via videos with breast cancer patients explaining simple things like the need to ensure you take front opening pyjamas to hospital.

It has advice on how to tell your friends and family you have cancer, and how to deal with well-intentioned family members.

After breast cancer patients have had surgery the app provides advice on exercises to help recovery.

The fact that the information is in a digital form means it is easy to change and this means “the information will be absolutely up to date.

In the past BCNA used to send out over 12,000 paper My Journey kits a year with postage costing $11 per kit.

Women can still get the information in paper form if they wish, Mr Pilatti said.

If you or someone you know has been affected by breast cancer, you can access the My Journey online tool at bcna.org.au/myjourney

Monique Morton has had her eggs harvested and is now considering risk reduction surgery.

MONIQUE’S JOURNEY

Melbourne tourism operator Monique Morton was living in the spectacular Sacred Valley in Peru and trying to conceive her first child when she was diagnosed with breast cancer last year.

The 30-year-old had to leave her fiancé to come home to Australia for treatment after receiving the devastating news.

“I was diagnosed on October 25 and was back in Australia on October 31 and November was full of biopsies and tests and it was very emotionally draining with my partner on the other side of the world,” she said.

Trying to process all the information being thrown at her Ms Morton said being able to trial the BCNA’s new My Journey app was extremely helpful.

“It was very compassionate and was appropriate with what I was going through at the time,” she said.

“You create a profile of yourself and the type of cancer you have and then you can choose the information you need,” she said.

“Fertility was a huge issue for me and when I logged on and selected the information I felt it had been tailored for my experience,” she said.

The app prompted her with questions she could take to her doctor, explained possible chemotherapy side effects, how to deal with losing your hair and what to expect when having surgery and exercise post surgery.

Ms Morton had her eggs harvested on December last year now she is considering risk reduction surgery that will involve a double mastectomy and breast implants.

“I’m very young, I’ve got 30-50 years of my life ahead of me,” she said.

Originally published as New digital tool helps women with breast cancer navigate the health system