Secondary breast cancer – the signs and symptoms to look out for

 TRIGGER WARNING: This article contains information about secondary breast cancer 

Whilst it’s probably the last thing you want to think about, sometimes breast cancer does come back. Dr Liz O’Riordan, a former breast cancer surgeon who has had breast cancer three times and author of The Cancer Roadmap, spells out the red flags you should be checking for…

‘However, the possibility of recurrence isn’t sometimes even mentioned  to some people for whatever reason; there might never seem to be a good time to tell someone about the risk, or a doctor might be too busy, but it’s really best to be made aware because the truth is you have to be vigilant (particularly with HER2  breast cancers) for the rest of your life.’

Dr Riordan says a good general rule to go by is that if you’ve had a new symptom for more than two weeks, it’s getting worse and you can’t explain it, go and get it checked and say that you’re worried that your breast cancer is coming back.

‘We don’t always see the same GP, don’t assume they know you have had breast cancer – they may not have had time to read your notes, so it’s worth mentioning your history of cancer,’ says Dr O’Riordan.

‘They have to take you seriously then; it’s about saying those magic words. Most of the time it will be nothing, but it’s better to be safe than sorry. They should send you to the breast unit where the necessary scans can be arranged.’

When breast cancer comes back 

‘When breast cancer comes back it can do so in two ways. The first way is locally in the area it originally affected such as breast tissue and skin, lymph nodes in the armpit and that’s called a local or regional recurrence,’ says Dr O’Riordan.

‘This type of recurrence doesn’t happen very often – in only around 5 per cent of cases – and is still potentially curable with surgery, radiotherapy and chemotherapy.

‘The second way it can come back is as a distant recurrence where the cancer cells have travelled beyond the breast and the armpit to your bones, your organs such as the brain or lungs and your skin. This is variously known as secondary breast cancer, stage 4 breast cancer or metastatic breast cancer. Those terms all mean the cancer can be treated but can’t be cured.

‘This is because it’s been in the blood or the lymph system and travelled around the body.’

What do I need to know about secondary breast cancer?

There are currently estimated to be around 61,000 people living with secondary breast cancer in the UK².

‘Secondary breast cancer cells happen when breast cancer cells move outside the breast and get into local lymph and blood vessels so they can spread around the body,’ says Dr Riordan. 

‘There is no way of knowing this has happened, but we know it does because some women get breast cancer later and that’s why we give women and men drugs such as tamoxifen and herceptin and radiotherapy to try and mop up these cells and kill them off.

‘Most of those cells die because they can’t find their own food supply, or our immune system kills them off by sending white blood cells to attack them, but sometimes they just hibernate like a hedgehog for winter, in our bones, liver, or lungs for years. With ER positive breast cancer, they can stay asleep for 20 or 30 years. We don’t know yet why that happens or what wakes them up.’

Dr Riordan says there is another type of secondary breast cancer called oligo metastatic breast cancer  where you have only one or two small  metastatic deposits in one or two small areas of the body – say your lung or your sternum (breast bone) and it isn’t anywhere else, surgeons may be able to remove those cells to try and make you cancer–free again.

‘Metastatic or secondary breast cancer is harder to treat because the cells mutate and can develop resistance against the drugs used to treat them and eventually they don’t respond to any of the treatments because they have gone rogue and that’s when the end of life approaches, but it can be quite a long time before that happens – many years in some cases –  and people can live with it for a long time.’

This will depend on the type of breast cancer you have, but average five-year survival of secondary breast cancer is 32 per cent for women and 20 per cent for men³.

 ‘It’s really difficult to predict how long people with secondary breast cancer will live – but with more treatment options available now, some live 10 or 15 years or more,’ says Dr O’Riordan. How long you live after a diagnosis depends on the type of breast cancer you have, and how early it was picked up – which is why it’s so important to be vigilant.’

Does timing of recurrence depend on what type of breast cancer you have?

‘We know that triple negative breast cancers tend to come back in the first two to five years after treatment finishes, and that if you make it to five years the risk of recurrence tends to drop,’ says Dr O’Riordan.

‘It’s the same with Her2 positive cancers and after five years the risk starts to drop, so if you make it to 5 years then you’re more likely to make it to 10.’

‘With ER positive cancers they are also more likely to come back within 2 to 5 years, but that risk doesn’t drop, and the risk of recurrence lasts for 10 to 20 or even 30 years later.

What are the most common sites for secondary breast cancer to occur?

The most common parts of the body for ductal and lobular secondary breast cancer to affected are the bones, liver, lungs, and brain.

What are the lung symptoms of secondary breast cancer?

‘You might notice you are feeling out of breath when you’re exercising and that might progress to feeling out of breath at rest,’ says Dr O’Riordan.

‘You might be breathless walking up the stairs or be out of puff on a dog walk when you could previously normally walk for half an hour.’

 ‘Other symptoms include a dry cough, or a tightness in the chest that doesn’t go away.’

Dr O’Riordan says these could also be symptoms of other serious conditions such as angina, COPD (chronic obstructive pulmonary disease, a lung disease), or lung cancer, so it’s important they are checked out whatever the cause.’

Bone symptoms 

‘Pain is generally felt where the tumour has grown like in the femur – the long thigh bone in both of your legs running from your hip to your knee, and the humerus, the single long bone of the arm running from shoulder to elbow, but also in the ribs and the sternum (breastbone) and spine,’ says Dr O’Riordan.

‘It’s often a pain which feels very deep and doesn’t respond to painkillers and is worse when you are lying down at night.’ 

Unexplained back pain is another symptom, and this can lead to difficulties walking and a numbness in your legs similar to sciatica, as well as loss of control of your bladder and bowel (incontinence).

‘Another common symptom is that you break a bone after a very simple low-impact fall. Normally, it would take a lot of force to break your hip for instance, but if the cancer is in your bones, the bone is thin, and it doesn’t take a lot of stress to break it.’

Symptoms in your liver

‘This may feel like tummy pain, generally in the upper right quadrant of the abdomen. The pain can radiate to your shoulder and can also cause bloating, nausea and hiccoughing, as well as tiredness (similar to the fatigue experienced after chemotherapy), and eventually itchy and yellowing skin colour,’ says Dr O’Riordan.

‘If you’ve had chemotherapy, you will recognise the extreme feelings of fatigue, it’s feeling tired all the time and having absolutely no energy to do anything. You’re really, really, tired and you do not know why – you have not been exercising and you’re not depressed, there’s no obvious explanation.’

Brain symptoms 

‘HER2 secondary breast cancer can go to the brain and the symptoms of that are a new constant headache, feeling sick and being sick, especially first thing in the morning, and weakness or numbness down one side of the body, feeling dizzy or unsteady or that you’ve lost your balance or co-ordination, so it’s hard to walk in a straight line,’ says Dr O’Riordan.

‘You may also start having seizures or fits and problems with your vision such as double vision or blurred vision. You might also develop difficulties with talking, as well as confusion and problems with your memory, depending on what part of your brain is affected.’

Other more general symptoms include tiredness, feeling sick, weight loss and loss of appetite.

Coping with fear of recurrence

Research shows that 81 per cent of people who have had breast cancer experience fear of recurrence⁴. One in five says the fear of recurrence impacts both relationships with their partner and leisure time, hobbies ,and travel plans⁵. 

‘The fear is real. I’ve been living with it for ten years now, but it does get easier with time. Knowing what to do when you have a worrying symptom helps. And as long as you’re eating a healthy diet and exercising, everything else is out of your control

‘So try to live your life as best you can. If you find that you can’t move on, contact your breast team or a local cancer centre for counselling, that can give you strategies to help you move forwards.

• If you are worried about any new symptoms check them out with the free app Know your lemons. 

References

1. A fifth of women with breast cancer have a recurrence, new UK figures show. British Medical Journal June 2012. ↩︎
2. In the UK there are estimated to be 61,000 patients living with metastatic breast cancer, many of whom will have developed this following a recurrence ↩︎
3. Secondary breast cancer survival is on average only two to three years. SOURCE; LIN. N. U et al International Guidelines for management of metastatic breast cancer (MBC) from the European School of Oncology. Breast 22, 2023 -2010 (2013) ↩︎
4. https://breastcancernow.org/support-for-you/living-with-secondary-breast-cancer ↩︎
5. https://www.novartis.com/uk-en/shining-spotlight-impact-breast-cancer-recurrence ↩︎