Secondary breast cancer: what you need to know

TRIGGER WARNING: THIS ARTICLE DISCUSSES SECONDARY BREAST CANCER

If you’re a primary breast cancer patient, or you’ve had primary breast cancer, you might want to find out a little bit more about secondary breast cancer. It can be quite worrying to think about the recurrence and spread of cancer. But if you want to know more, here is some information to get you started together with some signposts directing you to more information and support. We’ve put this together from our own experience as breast cancer patients. and from our own research. This article has been reviewed by a breast care nurse and many thanks to Liz O’Riordan, (breast surgeon, co-author of best-selling ‘The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control’ and speaker) for contributing to and checking this page.

What is secondary breast cancer? 

Secondary breast cancer is stage 4 breast cancer and is also known as “advanced” breast cancer or “metastatic” breast cancer. It happens when breast cancer cells that have been ‘sleeping’ in the blood or lymphatic system wake up and spread to other parts of the body. This is despite all your previous treatment to try to prevent this happening. Roughly five in every 100 people with breast cancer already have secondaries when their cancer is first diagnosed *. Some people who’ve had primary breast cancer go on to develop secondary breast cancer a number of years after their primary diagnosis.

According to Liz up to a third of people who’ve had primary breast cancer will go on to develop metastatic cancer. Your risk depends on lots of different factors. This doesn’t mean that everyone has a 1 in 3 chance of getting secondary breast cancer. It is estimated that around 57,000 people are currently living with secondary breast cancer in the UK.**  There is currently no cure for secondary breast cancer. 

Depending on a number of factors (including how far the cancer has spread, where it has spread to and for how long the cancer has been spreading) the length of time that someone can survive after a diagnosis of secondary breast cancer varies greatly (up to a number of years) and it’s spread can often (but not always) be controlled with treatments.

*Statistics courtesy of Cancer Research UK as at the date of writing

**Statistics courtesy of Breast Cancer Now as at the date of writing

What is the difference between secondary breast cancer and a recurrence of breast cancer? 

It is also worth pointing out here that there is also a risk of developing primary breast cancer again. Maybe in the other breast for example, or a local recurrence of the same primary breast cancer that you originally had. The chances of you having a local recurrence depends on your type/stage/grade of breast cancer, your reaction to treatment and various other factors that are all personal to you.

There are ways in which oncologists can calculate a patient’s risk of a recurrence. Some oncologists will tell you as a matter of course what your risk is, whilst others will not. If you want to know, you can ask – but think very carefully before asking because once you know, you can’t un-know the answer. For more information on recurrence take a look at the Breast Cancer Now information page.

You may, or may not, be told by your oncologist about the risks and signs of developing secondary breast cancer when you finish primary breast cancer treatment. 

Not all oncologists will discuss this with you. In fact, it seems fairly common to not be told. So if you want to know more about this, don’t be afraid to ask your oncologist about the risks of secondary breast cancer and what you should be looking out for. See our list of suggested questions that you can ask your oncologist here. These will provide you with a starting point from which to have a conversation about this.

Educate yourself. 

Don’t be afraid to ask your medical team about secondary breast cancer. And don’t be afraid to read around a bit on the topic. Googling is probably not the best thing to do as you don’t know what you might find. So use the resources in this article as a starting point and just read what you feel comfortable reading. We’ve listed below, lots of places where you can find reliable information about secondary breast cancer.

Familiarise yourself with the risks, including your own risk. 

You may come across various statistics about the proportion of women who will go on to develop secondary breast cancer after being successfully treated for primary breast cancer. This can be worrying and confusing to read about. So you may want to talk to your oncologist about your own personal risks.

The trouble with statistics. 

Remember that statistics (including any statistics relating to your personal risks) are a guide and can be wrong.

Familiarise yourself with the signs of secondary breast cancer. 

These infographics from ABC Diagnosis are a great way of understanding the signs. It should be noted that there are different signs depending on whether you had ductal or lobular primary breast cancer (they spread differently). Remember that you can always take the ABC Diagnosis infographics to your appointment and discuss them with your oncologist or breast care nurse.

Trust your instincts. 

Get to know your body and what is normal for you. Insist on checkups and scans when you feel that something isn’t right. Don’t let anyone make you feel like a hypochondriac. You know your body better than anyone else. Don’t be embarrassed to make an appointment if you are worried about something.

Always get professional medical advice. 

Always ask your breast surgeon, oncologist, breast care nurse or medical team about anything is worrying you. Don’t be afraid or embarrassed to ask ANYTHING. As helpful as the cancer community on social media is, don’t rely on social media for medical advice.

Live your life and enjoy every day! 

Despite the risks of recurrence and secondary breast cancer, don’t let it take over your life and cause anxiety. Take steps to help with any anxiety (here are some tips) and go out and live your life!

What happens if you are diagnosed with secondary breast cancer?

There are lots of treatments and clinical trials for people with secondary breast cancer. There is a huge amount of support available for women with secondary breast cancer. Take a look at this page on Secondary Breast Cancer Resources to point you in the direction of support and advice.

Further information

Future Dreams hold a range of support groups, classes, workshops and events to help you and your carers during your breast cancer diagnosis. These are held both online and in person at the London-based Future Dreams House. To see what’s on offer and to book your place, see here.

To return to the homepage of our Information Hub, click here where you can access more helpful information, practical advice, personal stories and more.

Reviewed December 2022

Unless otherwise specified, the information and content provided on this page has been written from a patient’s perspective then reviewed by (1) a breast care nurse and (2) Liz O’Riordan, (breast surgeon, co-author of best-selling ‘The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control’ and speaker) and it is intended for information and educational purposes only. It is not intended to substitute for professional medical advice. Please contact your medical team for advice on anything covered in this article and/or in relation to your personal situation. The links and/or recommendations in this article to third-party resources are for your information and we take no responsibility for the content contained in those third-party resources.