Our 2016 campaign calling for data on diagnosis and treatment of secondary (metastatic) breast cancer to be routinely collected by hospitals made great progress, but there’s still much left to do. We're working hard on it behind the scenes.

A banner with numbers and the words 'Who's counting?'

For many years, Breast Cancer Care has been calling for improvements in care for people living with and affected by breast cancer, including secondary breast cancer. We’ve been calling for data on diagnosis and treatment of secondary breast cancer not only to be routinely collected by hospitals but also to be shared publicly. This is so that commissioners and healthcare providers can identify needs and plan services effectively for local people.

Our 2016 campaign highlighted the extent of the problem by asking hospital trusts if they were recording this information. Many were not, or were doing so only partially, for a variety of reasons including lack of resource. Read more about the campaign>>.

Future changes

We’ve been working closely with Public Health England to discuss future changes to the way this information is recorded, through a database called the Cancer Outcomes and Services Dataset (COSD). We responded to a consultation on the next version of the COSD (version 8), following discussions with members of our Secondary Breast Cancer Nurses Forum and people living with secondary breast cancer.

Overall, we agree with proposed changes to the COSD as we think the new version will make it easier to identify secondary breast cancer. Our thoughts on the proposed changes are explained below.

Adding a new way of classifying secondary breast cancer

Currently, all breast cancers that have returned are classified as ‘recurrence’. But this makes it difficult to distinguish between primary breast cancer that has come back in the breast and secondary breast cancer, which has spread to another part of the body. This means cases of secondary breast cancer could be missed. The new system, which will classify the type of recurrence, will be a great improvement. Read more about what we mean by recurrence>>

Prompts to complete additional information

Currently, people adding information to the database may be missing some areas, leading to incomplete records. The proposal suggests prompting the user to complete associated areas at key points. We think this will help ensure more complete data collection on secondary breast cancer.

Specifying where the cancer has spread to

The proposal will allow for different secondary sites to be recorded. Currently, if a patient’s cancer is in more than one area, this is recorded as ‘multiple metastatic sites’. This means that vital information on where a person’s cancer has spread to isn’t recorded. This proposal will allow more information to be recorded, for example ‘spread to brain and liver’. We are querying whether this information is added at one set point (for instance, at diagnosis) or if it can be updated as a person's disease progresses. We hope that one day this database will be linked to a database of treatments so we can track which treatments are most effective and for which patients.

Clarifying the language used

One of the suggestions we’re making to Public Health England is to standardise definitions so that everyone adding information to the database is using each term to mean the same thing. Feedback we’ve received tells us that terms like ‘recurrence’ and ‘progression’ may be used by different clinicians to mean different things. For accurate data, definitions need to be clear and used consistently.

Claire McDonnell portrait

Full reporting of secondary breast cancer data will mean that people such as Claire McDonnell, who has secondary breast cancer and campaigns with us, will have a chance of better care in the future

On the road

We’ll continue to work with Public Health England and others to push for full and accurate recording of data about secondary breast cancer. As part of this, we are currently talking to hospital trusts about the importance of such data at Public Health England’s COSD Roadshows throughout January and February.

We are emphasising that unless we know exactly how many people are diagnosed with secondary breast cancer, services to meet their needs can't be planned effectively.

A lack of information also means that we don’t have a full picture of the long-term effectiveness of treatments for primary breast cancer. At a time when NHS budgets are increasingly under pressure, such information could help inform decisions about which treatments should be funded.

Get involved

If you’d like more information, or to get involved in our policy and campaigning, please email campaigns@breastcancercare.org.uk – we’d love to hear from you.