Women living with metastatic breast cancer have been left out in the cold – isolated from the services and support in place for women with early breast cancer.

Dr Andrea Smith, a consumer representative for the Breast Cancer Network Australia (BCNA), told the Australasian International Breast Congress that many patients were living longer with metastatic breast cancer which has in turn created new challenges.

“We want to live well. To survive and thrive we need to be counted and offered supportive care while we are living, not just palliative care as we are dying,” she said.

Dr Smith shared her experience of being diagnosed with de novo metastatic breast cancer six years ago.

“I did not receive any support from a breast cancer nurse when first diagnosed even though there were several at the hospital. The hospital ran 6-week information sessions which were not open to people with metastatic breast cancer.”

“I had never been treated with cancer so I wanted to learn about how to deal with hair loss, loss of appetite and fatigue, how to tell my kids about my diagnosis, how to navigate the cancer system,” she said.

She found the sense of exclusion and isolation extended beyond the hospital.

“For about six months after my diagnosis, I tried to join a diet and exercise program for other people diagnosed with cancer. I was then told I was ineligible – this time because I had not finished treatment.”

“I wanted to give back so when I heard about a volunteer peer-to-peer telephone support system for people diagnosed with cancer or living with the effects of cancer, I tried to sign up – only to find out it wasn’t open to volunteers or participants who have a metastatic or advanced cancer diagnosis.”

She said there had been some recent progress but for many people, services either don’t exist, waiting lists were too long, or they were unaffordable.

Dr Smith said she believed the disconnect was partly because supportive care services had not kept pace with the changing face of cancer – how treatment advances in metastatic breast cancer had created a growing population of people living for many years with treatable but not curable cancer.

“Not only do cancer support services not see us but some survivorship researchers don’t seem to see us either. Many survivorship studies actively exclude people with a metastatic diagnosis,” she said.

“I appreciate we are a challenging population to research. Often hard to identify, difficult to recruit and retain in studies, and we might have additional needs, but these are not good enough reasons to leave us out.”

“So in answer to the question ‘What matters most to consumers?’…being included.”

“We are dealing with pain, fatigue, fear of cancer recurrence or progression, body image, sexual function, impaired cognitive function, financial toxicity, side effects of ongoing and changing treatment, and the effects of the cancer itself on the sites where it metastasises.”

“With my public health background I believe a strong case can be made for care to focus on providing support for the people who need it most. And this might be people with early breast cancer who have been treated with curative intent and who are now post-treatment. But it might be people like me…people being treated to prolong life and who need help to live as well as possible.”

Cancer registries need to step up

In its latest Issues Paper Making Metastatic Breast Cancer Count: No Longer Hidden in Plain Sight [link here], BCNA said patients with metastatic disease had the highest support needs but access to fewer services than other patients.

It said the dichotomy was partly due to gaps in cancer registry data. Cancer registries focussed on incidence and mortality data but most did not collect information on stage at diagnosis and cancer recurrence.

“Incomplete data means those living with metastatic breast cancer are ‘invisible’ to health systems and policymakers. This is because they are literally not being counted consistently by our cancer registries.”

BCNA reiterated its call for “the collection and reporting of metastatic data as well as advocating for improved services to address the currently unmet needs of this population.”

The Paper said an estimated 10,553 Australians were living with metastatic breast cancer in 2020 – a figure which would rise to 12,840 by 2025.

Dr Smith, who contributed to the BCNA Issues Paper and is a research fellow at the Daffodil Centre, told the limbic that the narrative around breast cancer was all about survival.

She said the five-year survival rate of 92% dominates the discussion.

“We actually scare people with an early breast cancer diagnosis and a lot of the conversations are shut down because they don’t want to acknowledge that over 3,000 people are still dying from breast cancer every year.”

“There is a lot of pushback from the early breast cancer community …and I think we need to work together.”

She called on medical oncologists to recognise the complex needs of their metastatic patients and refer them to the appropriate support services as well as advocate for metastatic breast cancer nurses and dedicated metastatic breast cancer support groups.

“We need people to speak up on our behalf,” she said.