What everyone needs to know about secondary breast cancer

When there is talk about breast cancer, often sadly when someone well known passes away, it’s about primary breast cancer. The media focuses on stories of survival, remission and the well known signs and symptoms such as a lump. 

This is not secondary breast cancer. For most, they have never even heard of secondary breast cancer. 

On average 1,000 die from secondary breast cancer, every month, not primary. There is no cure. Secondary breast cancer is often misdiagnosed due to a lack of education and awareness around the signs and symptoms of this breast cancer.. 

Here are some of the simple facts and misconceptions we read and hear about secondary breast cancer everyday. This is why it’s so important to increase awareness, fund more research and provide vital support to those affected by the disease. 

1. Primary and secondary breast cancer are not the same. 

Secondary breast cancer, also known as metastatic, advanced or stage IV breast cancer, 

is breast cancer that has spread to another part of the body, most commonly the liver, brain, bones, lungs or the skin.

It happens when the initial breast cancer cells (primary breast cancer) spread through the bloodstream or lymphatic system. It is not, as an example, lung cancer or cancer in the bones. 

Primary breast cancer is when the cancer is the breast or the lymph nodes 

under the arm and hasn’t spread to anywhere else in the body. 

2. The signs for secondary breast cancer are not the same as primary. 

Common signs and symptoms of secondary breast cancer:

• Pain in your bones that is not relieved by pain medication. Bone pain may worsen in the evening
• Breathlessness and or a persistent dry cough
• Nausea
• Feeling more tired than usual
• Ongoing headaches that are not relieved by pain medication
• Losing your appetite and/or losing weight
• Swelling and an uncomfortable feeling in your stomach area
• Blurred vision, loss of balance or any feeling of weakness and numbness in your arms and legs
• The discovery of lumps or swollen areas under your arm, in your breast and/or your collarbone areas

Signs and symptoms of primary breast cancer can include: 

• A lump or swelling in the breast, upper chest or armpit
• A change to the skin, such as puckering or dimpling
• A change in the colour of the breast – the breast may look red or inflamed
• A nipple change, for example it has become pulled in (inverted)
• Rash or crusting around the nipple
• Unusual liquid (discharge) from either nipple
• Changes in size or shape of the breast

3. It is secondary breast cancer that people die from not primary breast cancer.

Primary breast cancer can be cured. This means it can be treated, there can be no traces of cancer and it shouldn’t come back.

Secondary breast can be treated but is incurable. 

This means that someone can undergo many different treatments - surgery, radiotherapy, chemotherapy, hormone therapy, targeted biological therapies and clinical trials - and will be on some form of treatment for life. . 

The aim of treatment is to relieve symptoms and crucially, control and slow down the spread of the cancer, giving the best quality of life for as long as possible. But there is no cure.

Around 35,000 people in the UK  have secondary breast cancer.  About 1,000 people lose their lives to SBC every month and about 31 every day. 

4. There needs to be much more awareness of the signs & symptoms of secondary breast cancer after a primary diagnosis for patients, nurses and doctors.

We don’t know exactly how many people have secondary breast cancer as there is currently no audit of patients.

Research from Breast Cancer Now says that of women who had previously been treated for primary breast cancer, nearly one in four (24%) had visited their GP three or more times with symptoms before being diagnosed with the return and spread of the disease.

The same research also says that 20% of women previously diagnosed with primary breast cancer are initially treated for another condition, before receiving a secondary breast cancer diagnosis.

We also don’t know how many people had a primary diagnosis first - research from the US suggests 30%, so nearly one third.