Brigitte's Story: Self-funding metastatic cancer treatment

24 Nov 2023

At 31 years old, Brigitte never imagined receiving a triple negative metastatic breast cancer diagnosis. She was in her third trimester of pregnancy with her second child when she discovered a lump in her breast. Like the medical professionals she initially consulted, she assumed the logical conclusion for the lump was mastitis or some other pregnancy-related breast changes. 

After an initial ultrasound and consultation, she was given antibiotics to treat the suspected mastitis, but things didn't improve. Brigitte continued to voice her concern about the lack of improvement in the lump to her GP, who began advocating for further investigation. After much back and forth, a long day in A & E to seek answers to no avail and more courses of antibiotics, she still had no inkling that the lump was more serious than this.

Six weeks after finding the lump, she was admitted to the birthing unit feeling concerned for the health of her unborn child when the antibiotics she was taking made her feel lightheaded. It wasn't until four days after admission that she was booked for another ultrasound and a mammogram to investigate things further. 

Her phone rang as she walked out the hospital doors after being discharged. On the other end of the line was the breast clinic, requesting her to come for an appointment that afternoon to discuss the results of her scans. 

With no family history of breast cancer and her young age, Brigitte remained optimistic that perhaps she had a cyst and might just require a minor surgery. 

In no uncertain terms

In the middle of a worldwide pandemic, she sat in front of a breast surgeon as close to birth as she could possibly be as he shared with her in no uncertain terms that she has triple negative breast cancer. 

“There is no good way to get that news, right?”

 - Brigitte Philips

Hearing this felt unreal to Brigitte; it was as though this moment didn't belong to her. She was just weeks from meeting her second child and was now being told that she had a 9cm lump in her breast, which had spread to her lymph nodes. This initial conversation left her with more questions than answers and unsure what the immediate and longer-term future held for her. She was lost, pregnant and in the middle of one of the world's harshest lockdowns. 

“It was almost like I was having this conversation from high over my body I remember saying to my husband, ‘This isn't happening to me.”

-Brigitte Phillips

A baby is born

At the moment of initial breast cancer diagnosis, the medical team knew it had spread throughout the lymph nodes. As she was so far into her pregnancy, chemotherapy to treat the cancer was not possible, nor was access to PET scans to rule out any spread of the cancer. She was told her baby needed to be born, and five days later, via c-section, she gave birth so she could start immediate chemotherapy treatment. 

With the baby safely outside, the focus turned to Brigitte and finding out the extent of her cancer.

It’s in your bones

A week after that traumatic initial consult with a breast surgeon with a newborn infant, Brigitte received the results of her PET scan. It was no less traumatising to hear from her oncologist that they now knew the breast cancer was metastatic and had spread to her other breast, spine and femurs. The spread throughout her spine was so significant she had a fractured vertebrae. 

Here is Brigitte Philips, 31 years old, with a week-old baby, being told she has De Novo breast cancer and suddenly aware she is being given a terminal diagnosis. 

Her oncologist never gave her a prognosis but instead switched his focus to treatment, telling her she was treatable and had options. But he made it understood that she would be on treatment for life. 

Other Opinions

Due to start on a strong dose of chemotherapy, Brigitte sought out two other opinions, including one from an oncological team in Spain, where she has family in medical-related industries. What surprised her was that everyone she consulted had different opinions. And so, with her very limited knowledge of cancer, she was left with the choice of what to do and how to proceed, a choice that needed to be made quickly. 

She opted to start chemotherapy treatment with Abraxane while she waited for confirmation from other tests, including investigations into a possible genetic mutation. Despite having no family history of cancer, her young age and triple-negative status made everyone strongly suspect that there was a genetic component at play. After a long six weeks, her test for BRCA1 did indeed come back positive. 

From her consultations with different oncology teams, she took this finding as a positive piece of news - it meant she was now a candidate for PARP inhibitor treatment. With her research background, she had delved into studies about this type of treatment and logically and intuitively knew this was her best chance. 

I’ll pay for it

After testing positive for BRCA1, Brigitte assumed she would be switched to a PARP inhibitor treatment. However, she unexpectedly learned at her next appointment that the treatment was not funded for breast cancer by the Pharmaceutical Benefits Scheme. Because of the significant cost associated with the treatment, her oncologist was not even going to suggest this as a treatment option. This trajectory changed in four words when Brigitte snapped and said, “I’ll pay for it!” And so began Brigitte's journey of self-funding her cancer treatment. 

A week later

A week later, Brigitte started a new treatment regimen that included the PARP inhibitor and two other chemotherapy drugs. This trifecta of drugs had heavy side effects and was incredibly challenging given she had recently given birth, but she was determined this was her biggest hope.

At the time Brigitte knew the cost of the PARP inhibitor treatment could be up to $7,000 per month. She assumed this would be an ongoing cost for the rest of her life. With support from friends and family and a grant from the Illawarra Community Foundation, Brigitte got through her first three months of treatment. To keep getting the treatment she knew she needed, her husband and herself were willing to remortgage the house or sell it if Brigitte could keep accessing the PARP inhibitors. 

It felt smaller

Brigitte could feel that the treatment was having an effect on the lump in her breast, which felt noticeably smaller within a few days of starting the new treatment. However, she had no idea how the treatment affected her metastatic disease. Just three months after starting self-funded treatment, she was sitting in her oncologist’s office, anxiously awaiting the results of a follow-up PET scan. The result was better than anything she could have imagined, revealing no evidence of disease. 

“The word my oncologist used was - remarkable.”

-Brigitte Philips

The response to the treatment was amazing. Had Brigitte not spoken up about her willingness to fund the PARP inhibitor treatment herself, who knows where she would be right now. As Brigitte continues her treatment on the PARP inhibitor alone, there remains no evidence of disease.

Compassionate access

"Imagine being told that there is a medication that could potentially save your life, but in the same breath finding out that you can't afford it" 

- Brigitte Phillips

Brigitte recognises that she has since been fortunate to access the Compassionate Access Program offered by the pharmaceutical company that supplies the PARP inhibitor treatment. However, she notes that for many patients, the cost may still be prohibitive and that pharmaceutical companies need to do more to provide meaningful, compassionate access to patients who cannot access medications through PBS.

Looking to the future

It has now been two years since that initial triple-negative diagnosis. Brigitte has had a preventative mastectomy and continues to see her oncologist every 3-4 months. He has never given her a prognosis, and nor has she asked. And while no one has a crystal ball into the future, his advice is that she must start living her life as though she doesn't have cancer, given there now is nothing in her results suggesting she does. 

This journey and treatment have changed Brigitte; she now makes sure she spends her time on things she enjoys. She has taken a year to make the most of her time with her small children. but she has every intention of going back to work. She continues to take the PARP inhibitor treatment daily, and while some of the side effects can be challenging, she also sees it as a daily reminder of how lucky she is. Her journey has changed everything about her - but in Brigittes words “for the better.”