'Cried and cried': How a breast cancer trial changed the lives of survivors

Donna Rullo was one of the first people in Australia to access trastuzumab through a clinical trial in 2001. (Supplied: Donna Rullo)

Donna Rullo wasn't going down without a fight.

It was early 2001, and then-40-year-old Ms Rullo had just been diagnosed with HER2-positive breast cancer.

Up to one in five cases of breast cancer are HER2-positive, which means the cancer cells have higher than normal levels of human epidermal growth factor 2 (HER2) protein, promoting growth of the cancer itself.

It's an aggressive and fast-growing cancer, but typically responds well to targeted treatments.

When Ms Rullo was diagnosed, targeted treatments weren't an option in Australia.

But 25 years ago, she took a leap of faith and joined a drug trial that changed the course of her life, and that of countless women after her.

More than two decades after having it cut off, Donna Rullo still has her hair in this same gold box. (Supplied: Donna Rullo)

When Ms Rullo heard about now-retired oncologist Richard Bell's involvement with a trial for a new drug called trastuzumab, she drove five hours from her regional fruit farm to Melbourne for one of his lectures.

Ms Rullo says she rang him once a week before securing a position on the HERA (HERceptin Adjuvant) trial, which went on to enrol more than 5,000 patients from 39 countries.

She recalls being motivated to watch her son, now 37, grow up.

"I went through 10 years of IVF to have him, my son's 12 and he needs me and I want to be here," she says.

"He said: 'It's Richard, I just wanted to tell you, you're patient number one of the HERA trial,'" she says.

"I just cried and cried. I couldn't stop. I was so emotional."

The trial went on to show that taking the drug trastuzumab for a year "significantly improves long-term disease-free survival" for patients with HER2-positive early breast cancer.

"It was the first drug that really showed promise and women were just thinking: 'Oh my God, finally we have something we can all hold onto,'" Ms Rullo says.

Donna Rullo had chemotherapy, surgery and radiotherapy before joining the trastuzumab trial. (Supplied: Donna Rullo)

Twenty years ago today, trastuzumab was added to the Pharmaceutical Benefits Scheme (PBS) for the treatment of patients with HER-2 positive early-stage breast cancer.

It's a move which Breast Cancer Network Australia founder and then-chief executive Lyn Swinburne says has been "life-changing" for thousands of Australian women since.

Trastuzumab is now the most common HER2-targeted therapy offered to patients in Australia and New Zealand.

It may be given alongside surgery, chemotherapy, radiation or other HER2-targeted treatments, and works by attaching itself to the cancer cell HER2 receptor.

Lyn Swinburne was diagnosed with breast cancer in 1993. (Supplied: Lyn Swinburne)

Before its inclusion on the PBS, women not on trials like Ms Rullo were paying between $50,000 and $70,000 a year for treatment, or went without.

It was an accessibility gap that Ms Swinburne and then-Breast Cancer Network Australia board member, breast cancer survivor and former Olympian Raelene Boyle wanted to address.

"I was hearing from women who were selling their houses, selling their holiday houses, selling their farms to try and get this drug," Ms Swinburne says.

"Probably knowing it wasn't going to save their lives necessarily, but it was going to extend their lives, and especially when you've got young children, that's really, really important."

In June 2001, they invited prime minister John Howard to Ms Boyle's 50th birthday, sitting him between them as they lobbied for the drug to be subsidised.

"We basically talked to him all night about this drug and the difference it made," Ms Boyle recalls.

Raelene Boyle, pictured with former prime minister John Howard, described her 50th as a great party. (Supplied: BCNA)

In late 2001, the government announced a special program which allowed women with HER-2 positive metastatic breast cancer to access the drug for free.

Then, on October 1, 2006, it was added to the PBS for the treatment of patients with HER-2 positive early-stage breast cancer.

Breast cancer is very common in Australia, with one in seven women diagnosed with the disease over their lifetime.

Although more people in Australia are being diagnosed with breast cancer each year, Breast Cancer Network Australia chief executive Kirsten Pilatti says survivors are also living longer than ever before.

"Survival has certainly improved because we know more about the specifics of different breast cancers," she says.

In 2017–2021, the chance of surviving at least five years post-diagnosis was 93 per cent, up from 75 per cent in 1987–1991.

Rachel Dear, a medical oncologist at St Vincent's Hospital in Sydney, says improved survival rates have been driven by earlier detection and diagnosis, improved awareness and "more personalised and targeted" treatments.

Rachel Dear says personalised treatment options for patients have led to improved outcomes. (Supplied: Rachel Dear)

Understanding more about how different types of cancer behave and respond to treatment allows specialists to tailor treatments to each patient, Dr Dear says.

"Treatment has changed depending on which subtype of breast cancer we're looking at," she says.

"There are three main types of breast cancer, and within each of those three types, there are more drug treatment options that have improved survival rates.

"In 2026, we have a number of new drug treatments to offer patients."

Breast cancer's huge public profile means there is greater awareness of the disease, Dr Dear says, but has also led to greater investment in research and clinical trials, resulting in more treatment options for patients.

Ms Rullo considers herself lucky to have seen her son grow into a "remarkable" man, marry and have two kids of his own.

She encourages people facing an uncertain health diagnosis to learn as much as they can and to advocate for themselves, if needed.

"Life could have completely gone a different way, who knows what could have happened if I didn't fight to be on that trial," she says.