Patients with secondary breast cancer and their clinicians say they are worried that Scotland is failing to gather the data it needs to identify patients whose cancer may have spread, and cannot plan services for them effectively as a result.

The Scottish government says it is on track to meet its commitment to improving data collection under its Cancer Action Plan, but a meeting in the Scottish parliament has heard concerns that the process has been too slow.

According to the charity Breast Cancer Now, every year around 4,800 people in Scotland are diagnosed with breast cancer.¹

For some people, treatment of early breast cancer places them in lifelong remission.

For others, their breast cancer becomes metastatic, spreading to secondary sites in their body beyond the breast, such as their bones, lungs, liver, or brain.

Oncologists speaking at a meeting in the Scottish parliament told their audience that data they and colleagues had collected suggests approximately one third of patients do not know they have breast cancer until they are diagnosed with metastatic disease. Two thirds have already been treated for early breast cancer.

Around 30% of all secondary breast cancer cases are diagnosed during emergency admissions, the patients already being very unwell.

Dr Simon Vincent, Director of Research, Support and Influencing at Breast Cancer Now, said accurate data is central to best care:

“We're interested in data, because a lot of the improvements that we want made are only possible if we know the people who are affected and the challenges that they face.

“And yet, the data that is collected around secondary breast cancer is woefully inadequate. There are commitments that have been made that we want to make sure do actually happen.

“That’s why the Scottish government must urgently work with partners and people living with the disease to agree what data will be collected. There must also be support to ensure it’s collected. Only then will people with secondary breast cancer get the care and treatment they desperately need and should be able to count on.”

Scotland’s cancer audit

According to Professor Peter Hall, an academic medical oncologist at the Edinburgh Cancer Centre, Scotland is very good at collecting data on early breast cancer, but not in its later stages:

“The jewel in the crown of Scottish cancer data is the Scottish National Cancer Audit Programme. For nearly 20 years, all Scotland’s NHS boards have been auditing early breast cancer across things like diagnostics, drug treatments, surgical treatments, radiotherapy – providing really valuable data to drive improvements in early breast cancer services.

“But we don't have a similar audit program for metastatic or secondary breast cancer and that's a real missed opportunity. There are some real challenges in implementing audits at a national level for metastatic breast cancer, but the biggest challenge is actually identifying the patients.”

For Dr Rosemary Stevens, a consultant clinical oncologist focused on metastatic breast cancer, the lack of a national approach to data on secondary breast cancer is a continuing frustration for her and her colleagues:

“I feel that a lot of the things that we haven't yet achieved in breast cancer are related to the secondary breast cancer group of patients, that have been historically underserved.

“Things like early diagnosis and prevention are so important, by the time you've got secondary breast cancer, we have to focus on the best treatment and managing these patients’ cancer.

“Because we don't know the numbers, we can't look to reduce the number of occurrences if we don't measure the number of occurrences. It’s a no-win situation.”

Action 131

The roundtable of patients and clinicians convened by Miles Briggs MSP focused on metastatic breast cancer and the commitments made for patients under the current Scottish Cancer Action Plan.

Action 131 of the Plan is a commitment to improve data collection on metastatic cancers, collating data nationally for the first time to help drive service improvement, with an initial focus on metastatic breast cancer.²

Concerns were raised at the meeting about the pace of progress being made to deliver this action.

Lesley Stephen has been living with metastatic breast cancer for nearly 11 years. She is a trustee of the metastatic breast cancer patients’ organisation, Make 2nds Count, and serves on the Lancet Breast Cancer Commission, a global investigation survey into the needs of breast cancer patients. She told the meeting effective data collection is important not just for science and services, but to ensure people count:

“Under the Scottish cancer plan, my understanding is that the aim is to agree the best methods of gathering data by March 2026, not even to start collecting that data by then, which sends a message to us patients that we're not that important, we’re not really a priority.

“But we don't have time to wait. Between now and then, hundreds of women will have died in Scotland without being counted, and it means that we in Scotland are falling well behind the rest of the UK.”

Scotland’s Minister for Public Health and Women’s Health, Jenni Minto MSP, sought to reassure the meeting that, in the next annual update on the plan in the summer, she will be able to report progress on delivering action 131.

“We are committed to improving data collection on metastatic cancers, collating data nationally for the first time to help drive service improvement, with an initial focus on metastatic breast cancer.”

Ms Minto said Public Health Scotland, which runs the Scottish Cancer Registry, is part of a network of European cancer registries and is also working closely with counterparts in England and Wales to consult clinical teams on taking forward European guidelines on recording breast cancer progression and recurrence.

She added:

“I am going to be receiving a business case outlining these implications from Public Health Scotland later this year. I think we are talking this summer, so slightly earlier than March 2026.”

Partner Content: This article has been funded by Novartis Pharmaceuticals UK Ltd following a meeting organised by the company held at the Scottish Parliament.

References

1  Breast Cancer Facts and Statistics, Breast Cancer Now (accessed March 2025) available here

2  Cancer action plan 2023 to 2026, Scottish Government (published June 2023) available here

 

March 2025 || UK || FA-11369241