Different women have different experiences of being diagnosed with secondary breast cancer.
Some women may visit their GP with one or more symptoms which they can’t quite explain. They may undergo a number of tests and be diagnosed straight away, or be treated for something else before it is discovered that they have secondary breast cancer.
Other women don’t notice any symptoms at all. Their secondary breast cancer may be picked up during a routine follow up after treatment for primary breast cancer or when undergoing tests for something else completely.
Some women are diagnosed with primary and secondary breast cancer at the same time (‘de novo’ secondary or metastatic breast cancer).
Whatever your experience, receiving a diagnosis of secondary breast cancer is usually a huge shock and it can be very difficult to process the vast amount of information that comes with this.
Here, we explain some of the medical terms and tests which women hear and go through on their own journeys to diagnosis and throughout their secondary breast cancer.
In this section
A number of different tests are used to take images of the organs in your body and to analyse your blood and cells. These allow doctors to look for any signs that the breast cancer has spread.
Depending on the tests you have, you may have to wait anywhere from a few days to several weeks before you receive your results. This can be an extremely difficult time and it can be helpful to discuss your worries with family or friends. If you feel you would rather speak to someone more independent, you can reach out to other charitable organisations or services.
If you are assigned a specialist breast cancer nurse, they will also be happy to provide you with support during this time.
The following information details some of the things you may encounter at diagnosis or later on in secondary breast cancer.
A range of different scans or procedures are performed to take images of the inside of the body, allowing doctors to check for secondary breast cancer spread or to see whether the cancer is responding to treatment.
X-rays: what to expect
The radiographer (a health professional trained in taking images of the body for diagnosis and treatment of diseases) may ask you to lie flat, or to stand against a flat surface. The X-ray machine, which looks like a big tube containing a large light bulb, will be pointed at the area or areas of your body that your healthcare team are interested in investigating. The X-ray itself will take a few seconds, though the radiographer may want to take images from a few different angles. This should only last for a few minutes. As anything metal will also show up on the X-ray, you may be given a hospital gown and asked to remove clothing with metal zips or fastenings, such as your bra.
Bone scans: what to expect
Bone scans are also used to look for abnormal areas of bone where the breast cancer may have spread to. A small amount of very mildly radioactive substance is injected into a vein in your arm or hand using a small needle. This will not cause you any harm as the radioactivity is very low level. The needle shouldn’t hurt too much, though it may cause you some discomfort and/or bruising. Two to three hours after the injection, you will have the scan. This will track the radioactive substance in your body. As abnormal bone absorbs the radioactive substance more than normal bone, this will show up on the scan as what are known as ‘hot spots’. However, ‘hot spots’ aren’t always due to secondary breast cancer; they may be due to other conditions of the bone such as arthritis.
MRI scan: what to expect
An MRI scan is essentially a giant magnet which uses radio waves and magnetic fields to create images of the inside of the body. Before you have the scan, you’ll therefore need to remove any metal items. The radiographer will help you to make sure of this. To help make the images clearer, you may have a small amount of dye (known as contrast medium) injected into a vein in your arm. This may cause some discomfort and/or bruising. During the scan, you will need to lie still inside a long tube for about half an hour. The scan itself is not painful, though you may feel uncomfortable or claustrophobic. It can be quite noisy but the radiographer will give you some ear plugs or headphones and you will be able to speak to them throughout.
CT scan: what to expect
A CT scanner takes many X-rays to build up a 3D image of the inside of the body. It uses radiation, though this is very unlikely to be harmful to you and it will not harm others you come into contact with. Prior to the scan, you will be asked not to eat or drink for around 4 hours. You will receive an appointment letter which will give you all the information you need beforehand. To make the images clearer, a dye may be injected into a vein in your arm. This should not hurt too much, but may cause some discomfort and/or bruising. Alternatively, this dye or ‘contrast medium’ may be given to you as a drink to be swallowed or passed into your bottom as an ‘enema’. This dye will pass out of your body in your urine later on and will not cause you any harm.
The scan itself should last anywhere between 10 and 30 minutes. The scanning machine is a ring that rotates around your body as you pass through it, lying on a flat surface. This may be uncomfortable but, as it does not completely surround your body, you should not feel claustrophobic. You will be able to hear and speak to the radiographer through an intercom.
PET-CT scan: what to expect
‘PET’ stands for positron emission tomography. A PET scan measures the activity of cells in different parts of the body by using a low dose of radioactive glucose (sugar) and x-ray imaging. The radioactive substance travels around the body to areas where cell activity is higher than normal. Because cancer cells are more active than the body tissue surrounding them, they show up on the PET scan.
Prior to the scan, you will be asked not to eat or drink for around 4 hours. You will receive an appointment letter which will give you all the information you need beforehand. A small amount of the radioactive substance will first be injected into a vein in your arm. A scan is then taken a few hours later. The scanning machine looks like a large doughnut. You will lie on a bed and move backwards and forwards through the ring. It takes lots of different x-ray images and puts them together to give a 3D view of the body, usually taking between 30-60 minutes. The scan itself is not painful, though you may feel uncomfortable or claustrophobic. It can be quite noisy but the radiographer will give you some ear plugs or headphones and you will be able to speak to them throughout.
Liver ultrasound: what to expect
This test converts soundwaves into a picture of the liver and is often used to look for signs of secondary breast cancer. Some clear gel will be spread on your tummy and a small round instrument, a little like a microphone, will be moved over the area. This will not take very long at all and, though it may feel a little uncomfortable, it should not be painful.
Whilst a blood test cannot be used to diagnose secondary breast cancer, it can give clues as to whether breast cancer has spread in the body. For example, unusually raised levels of calcium in the blood can be a sign that secondary breast cancer is present in the bones and the levels of certain enzymes may suggest spread to the liver.
A biopsy test is when a very small piece of tissue is removed from the body, usually under local anaesthetic, to confirm a diagnosis of secondary breast cancer. It is also used to see if the cells have certain receptors on their surfaces which respond to different sorts of treatment.
This sample is taken using a needle, which is guided to the right place using a CT or ultrasound scanner. You may feel some pain and discomfort during the procedure and for a few days afterwards. Taking regular painkillers should ease this.
If the secondary breast cancer has spread to a place that is difficult to reach, this test may not be possible.
A pathologist (a scientist who investigates diseases by examining samples of body tissue) will perform tests on the biopsy sample to determine whether hormone and HER2 receptors are present on breast cancer cells. If you have been treated for primary breast cancer in the past, it is likely that these tests will have already been performed. However, it is common for these tests to be repeated as the results (known as your ‘receptor status’) may have changed in the time between your primary and secondary diagnosis.
If you had primary breast cancer a while ago, HER2 testing may not have been performed as this is a relatively new development. If so, it is important that your secondary breast cancer is tested for HER2 as this will guide your treatment options.
Page last updated: April 2020