SECONDARY BREAST CANCER means that cancer cells have spread into your lymphatic or blood vessels and started to grow in a different part of your body. This new growth is called a ‘metastasis’ or ‘met’ for short. The most common sites for mets are your bones, lungs, liver and brain. Secondary breast cancer is also known as metastatic cancer, advanced cancer, recurrent cancer, Stage 4 cancer or distant spread. It cannot be cured, but it can be treated, and some patients live for many years after being diagnosed with it, although this depends on what metastases they have.
Around 5 per cent of women with breast cancer have metastatic disease at the time of diagnosis. This is also called de novo metastatic disease. There is not a lot of accurate data about how many women with primary breast cancer get a recurrence, but the current estimate is that 20–30 per cent of women will get a recurrence in their lifetime. This does not mean that everyone has a 20–30 per cent chance of recurrence. Younger women are more likely to get a recurrence than older women, mainly because they are more likely to live long enough to get a recurrence. Also, women with a poor prognosis are more likely to get a recurrence than women with a good prognosis (see here).
If you have a high risk of recurrence when you are diagnosed, you are likely to be offered extra treatments such as chemotherapy and Herceptin (see Chapters 10 and 11) to reduce this risk. However, even if you have a slow-growing, low-risk cancer, it can still come back in 10 or 20 years’ time.
The symptoms of secondary breast cancer are often fairly vague and can mimic other medical conditions. Invasive ductal and lobular cancers (see Chapter 2) have different patterns of spread. Ductal cancer tends to spread to the bones, lymph nodes, lungs, liver and brain and is normally easily seen on scans. Lobular cancer, as well as spreading to the sites above, can also spread to your stomach, bowel and ovaries, and this can be much harder to see on a scan, simply because lobular cancer tends to grow in sheets of cells instead of forming a clump or mass. See here for a useful infographic which summarises the symptoms of secondary breast cancer.
Nobody wants to read this section. There is no easy way to come to terms with the fact that your cancer cannot be cured. How long you will live for depends on many things, including your age, whether your cancer is sensitive to oestrogen and Herceptin, and where in your body the metastases are. If you have only bone mets, you may live for many years with very few symptoms. If you have brain mets, however, your chances of living a long time are lower.
Your mets may have a different receptor status to your primary tumour, and they can even change receptor status over time. There is currently no way to predict how your cancer might respond to a certain treatment, and new treatments are always being developed. The aim of secondary breast cancer treatment is to try to keep it under control and stop it spreading further for as long as possible, often for many years. This means having treatment for the rest of your life.
Everyone with secondary breast cancer is different. The treatment package that is best for your cancer will be worked out by your own cancer team, taking account of your needs and preferences. Your doctor will monitor you with blood tests for tumour markers (see here) and body scans. The treatments are often referred to as ‘first-line’, ‘second-line’ and ‘third-line’. First-line treatments are the first drugs that your doctor will prescribe for you. If your cancer doesn’t shrink or starts to grow, they will then try the second-line treatment, and so on. We can’t cover all the individual treatments in detail in this chapter, but we want to give a brief overview of what is available. For more information and a social media link on the topics covered in this chapter, search online for ‘METUP UK’ – a campaign group committed to ending secondary breast cancer.
Most of the treatments for secondary breast cancer, such as chemotherapy, Herceptin and other targeted therapy, hormone therapy and bisphosphonates to strengthen your bones, are described in the earlier chapters in this book. You may be offered some or all of the above, depending on where your metastases are and what previous treatments you have had. In fact, many women who only have bone disease are just treated with hormone treatment and bisphosphonates, and do not need chemotherapy. In the next sections, we go into a bit more detail about some of the more specific treatments that you might need.
If you only have a small amount of cancer in one organ or bone (also called oligometastatic disease) and it is easy to reach, your oncologist may recommend surgery to remove the metastatic deposit. Surgery can also be used for symptom control – for example, if you break a bone in your leg because it has been weakened by cancer, an orthopaedic surgeon can insert metal plates and screws to fix it.
This is a technique that uses heat to destroy cancer deposits in organs like your liver. It can be done under sedation or with a general anaesthetic. Using ultrasound or CT guidance, fine needles with electrodes on the ends are inserted into the tumour, and these electrodes heat the tumour with the aim of destroying it.
Radiotherapy is given for pain control and to slow down spread, and is often used to treat your bones, your brain or your skin. You normally only have a couple of treatments instead of the long course given to the breast for primary cancer. If you have only one or two small areas of cancer in one organ, such as your brain, you may be given stereotactic radiotherapy (also called ‘Gammaknife’ or ‘Cyberknife’, after the machines that are used). This involves a very high dose of radiotherapy treatment which accurately targets the metastatic area, and may only be available in larger, specialist cancer hospitals.
If you have cancer in your lungs or liver, it can cause fluid to build up around your lungs or in your tummy. This can make it difficult to breathe, or your tummy might swell and feel very uncomfortable. You might need to have this fluid drained to make things easier. This can be done as a one-off procedure, or your doctors may leave a permanent drain inside your chest or tummy so the fluid keeps draining away (see here).
Sadly, most research on breast cancer to date has focused on primary breast cancer. Partly as a result of pressure from patients with secondary breast cancer, more research is starting to focus on how to prevent and treat it. Cancer Research UK has a list of all the current trials for breast cancer (see Chapter 6 for more on research trials), and this is a good place to start if you want to look for a trial that might suit you. It is important to look for trials sooner rather than later, as you may become ineligible to join a trial if you have already had certain treatments first. You may also need to travel to a larger cancer centre to take part in the trial, and the travel, on top of the side effects of treatment, can be taxing on you and your family.
QUESTIONS TO ASK YOUR DOCTOR
The following questions might help you decide what treatment to have:
● How extensive are my mets? Is only part of my body involved or several? If there is only one, can it be removed with surgery or radiotherapy?
● What is my cancer’s receptor status (i.e. is it ER+ve and/or HER2+ve)? Is this different from my primary tumour?
● Am I well enough to tolerate stronger treatments such as chemotherapy and surgery if I need them? How often will I need them and how will they make me feel?
● How will my treatment affect my quality of life? Can I carry on working? (You need to decide whether you are prepared to put up with certain side effects even if these lower your quality of life.)
● How will I be monitored? What scans and tests will I need and how will you know if the treatments are working?
● Are there any research trials that I can take part in?
● What happens when the treatments stop working?
It can be very hard deciding what treatment to have, and how much to have. there is always a trade-off between possible benefits of a treatment and potential side effects. if your cancer starts to grow despite switching treatments, or the drugs are making you feel rotten all the time, you may need to think about a gentler but less effective treatment or stopping treatment altogether.
Whereas Trish and Liz wrote most of this book from personal experience, they haven’t had personal experience of metastatic disease. Below, we quote, with kind permission, from ‘After Breast Cancer Diagnosis’, the website of Jo Taylor, a patient advocate with Stage 4 breast cancer herself:
In February 2014 I was diagnosed with secondary breast cancer. As like my primary breast cancer diagnosis, it was a huge shock. Many people don’t understand secondary breast cancer or that it doesn’t actually come back in your breast. That would be classed as a local recurrence or another primary breast cancer. Mine came back in my lymph nodes in my neck and I ended up with a couple of small spots in my sternum.
In a way, I was lucky not to have any of the major organs affected. But yet it’s still hard to comprehend and come to terms with, yet life carries on. I hope that it can be controlled and that it doesn’t progress further for a while.
I have treatment every 3 weeks for life, forever. I will have to continue this treatment otherwise the cancer will return and spread so that’s why you have to continue with the regime. The treatments hope to control the cancer. Again people don’t understand this, yes I may have hair on my head and be able to exercise but I have an incurable disease and that’s why I have to continue going to [hospital] every 3 weeks.
I have my bad days, days when I get a migraine from the treatment and I cannot function, aches and pains due to the drugs that I’m on, pain from the peripheral neuropathy in my toes and fingers but currently I’m doing OK.
One of the challenges of coping with secondary breast cancer is the uncertainty around the question ‘How long have I got?’. No doctor can give you an accurate estimate as everybody responds differently to treatment, and new treatments are being developed all the time.
Macmillan and Breast Cancer Care have separate sections for patients with secondary breast cancer, and you can get a lot of information and support from these websites. The US-based National Breast Cancer Foundation also has a lot of helpful information. (See here for further details of these organisations.)
One of the best ways to cope with secondary breast cancer is to link up with others who are going through it – either online (such as through the forums on the Macmillan and Breast Cancer Care websites) or in a support group. There are also many breast cancer bloggers who write eloquently about living with secondary cancer, such as ‘Stickit2stage4’. You could also try blogging yourself. This can be a good way of dealing with your emotions, interacting with others and letting friends and family know what is going on. Social media, such as Twitter and Facebook, can also be an excellent resource for support, advice and information.
It can really help to read what other patients have gone through, and to know that you’re not alone. There are several breast cancer memoirs that can be quite harrowing to read, especially as most of them end with the woman eventually dying due to cancer. For a more positive take, we strongly recommend Metastatic Madness: How I Coped With A Stage 4 Cancer Diagnosis (XLIBRIS, 2012) by Carol Miele, a nurse with secondary breast cancer. It’s well-written, funny, personal and – believe it or not – hopeful.
‘Palliate’ means ‘to relieve or make better’. It’s not the same as terminal care, which is only for the dying. The distinction is important, because you may benefit from so-called palliative care long before you are terminally ill. Palliative care is usually coordinated through liaison between your oncology team, your GP and specialist palliative care professionals, notably Macmillan nurses. If you are terminally ill, a hospice may be involved.
Palliative care consists of a number of things, including:
● Emotional and practical support from people who are used to working with those who have secondary cancer, to help you cope and optimise your quality of life.
● Adjusting drug doses to get the right balance between benefit and side effects.
● Help with pain control, including medication but also behavioural and cognitive approaches, as well as physical ones, such as TENS machines.
● Help with nausea, including careful review of your medication and advice on your diet and lifestyle.
● Help with other ongoing symptoms, such as constipation, skin sores, and so on.
● Emergency help if you deteriorate.
● Helping families come to terms with your diagnosis and understand how they can support you.
● Helping with end-of-life planning (see below).
Different localities have different arrangements for palliative care. If in doubt, ask your oncology nurse or GP.
If you’re reading this section, you have either reached the stage that there are no treatments left and your cancer is progressing, or you’re curious to know what the worst-case scenario is, even if you’re not there yet. None of this is easy, but it is important to think, talk and plan about where you want to die, and make sure your doctors and family are aware of your wishes.
The finality of knowing that you are going to die soon can make you feel fear, anxiety, anger, hopelessness, guilt, loneliness, depression and grief. Add to this worrying about what will happen to your family when you have gone can be incredibly overwhelming. We cannot even pretend to understand what this is like. However, we have both watched close friends die from cancer, and seen the different ways in which they coped.
Some patients have said that facing up to the reality of death, planning for it and talking to family and doctors about it can help with negative emotions. You may sleep easier and be able to take one day at a time if you have a plan for your own end-of-life and have begun to settle your affairs. This isn’t giving up; it’s getting real. Taking some control back may bring you a sense of relief and even peace. Indeed, you may find that you are better able to face reality than some of your loved ones.
Some people have a bucket list of things they want to do before they die, but if you suddenly become too ill to complete it, this could make you feel worse. Instead, you might want to create something enduring for your loved ones (perhaps in the form of a ‘memory box’ of photos and your favourite things, letters to be opened on future birthdays, or a book or blog). You may have a project you want to finish – or hand on – before you die.
You should almost certainly make a will, sort out your financial affairs and pull together documents your partner or family will need after your death (such as passwords to any accounts you’d like them to be able to access, and your life insurance details, if relevant). If you have young children or pets, you should think about making plans for how they will be looked after when you die. You may wish to give your partner Lasting Power of Attorney especially if there is a possibility that you may lose your ability to make your own decisions. An advance directive (‘living will’) is also a good idea. Macmillan call this an Advance Decision to Refuse Treatment and cover it in the ‘Sorting Things Out’ section on their website (www.macmillan.org.uk). You may also want to think about your funeral. This is never going to be easy, but you might want to talk about this with your loved ones so they know what you would like when the inevitable happens. Do you have a favourite song that you want to be played, or want everyone to wear your favourite colour? Instead of people sending flowers, you may want to ask them to donate to a cause close to your heart.
Death and dying remains a taboo subject in our society. The excellent charity Dying Matters (www.dyingmatters.org) offers more information for the dying and their loved ones, and also campaigns for more openness about death and dying. Another excellent website is Compassion in Dying (https://compassionindying.org.uk).
Coping with a diagnosis of secondary breast cancer must be incredibly difficult, and neither of us can imagine what you are going through. We do want you to know that you don’t need to stay positive all the time, and that it is okay to swear and shout and cry if it helps. Although your diagnosis may seem like a death sentence at the time, there are many women who still live a fulfilling and active life in between their regular treatments, and outlive their predicted survival. There is also a large online community of women who are constantly pushing for more research into metastatic cancer, and we live in hope that one day a drug will be developed that will cure breast cancer.