YOUR SURGEON WILL have a good idea of what treatment you need when they get the results of your core biopsy and your breast scans. However, they won’t be able to give you more accurate information (such as whether you need chemotherapy or what your prognosis is) until after you have had your surgery. This chapter will help you to understand why your team is recommending certain treatments for your breast cancer, and how your outcome after treatment is estimated.
Your core biopsy (see here) gives your doctors a snapshot of your breast cancer, but it doesn’t give them the full picture. Once your breast cancer and lymph nodes have been removed, a pathologist (see here) carefully analyses them. This gives your doctors all the details they need to help them plan what further treatment you need. You should be given most of this information to keep for your own personal records. The pathologist may refer to your breast cancer as a ‘tumour’. Below are the different elements that are included in a typical report.
In most cases, your actual tumour size is very close to the size on your scans, but sometimes it can be much larger. The pathologist may also find other areas of cancer in your breast. These are described as ‘multicentric’ (when the cancers are in different areas) or ‘multifocal’ (when the cancers are close to each other, in the same area). If you have more than one area, only the size of the largest cancer is used to work out your prognosis. If you have an invasive cancer, the pathologist may also find non-invasive cancer. However, they only use the size of your invasive cancer to work out your prognosis.
This is usually the same as the cancer identified on your core biopsy, but sometimes a different type of cancer is also found. The different tumour types are described in Chapter 2 (here).
This is an indicator of how quickly your cancer cells are growing and how different they look compared to a normal breast cell. Invasive breast cancer has three grades: Grade 1 is slow-growing; Grade 2 cancer grows more quickly; and Grade 3 cancer grows faster still. DCIS also has three grades – low, intermediate and high – which refer to how quickly the cells are growing and how close to an invasive breast cancer they are.
When your surgeon removes your breast cancer, they also need to remove a rim of normal breast tissue around it to make sure that no cancer cells are left behind. This rim is called a ‘margin’ (explained in more detail here). There are six margins – those around the sides of the cancer (superior, medial, inferior and lateral); the anterior margin (between the cancer and your skin); and the posterior margin (between the cancer and your chest wall). The pathologist will record whether these margins are clear of cancer cells. If they are involved, you may need another small operation to remove more tissue at the involved margin.
Lymphovascular invasion is when some of the cancer cells have invaded into neighbouring blood and lymph vessels. It means there is a greater chance that your cancer could spread to your lymph nodes or beyond.
A hormone is a chemical messenger that controls the growth and activity of normal cells. Hormone receptors sit on the outside of cells and bind the hormone. Some breast cancer cells have receptors for the hormones oestrogen and progesterone, and the cancer depends on these hormones to grow. If your cancer has oestrogen receptors it is called ER-positive (ER+ve), and if it has progesterone receptors, it is called PR-positive (PR+ve). The oestrogen receptor results are more important when it comes to planning treatment, which involves lowering the levels of oestrogen in your body (see Chapter 13). If your cancer does not have these receptors it is called ER-negative (ER-ve) and PR-negative (PR-ve). If you have non-invasive cancer (DCIS), the hormone receptor status is not normally recorded because it doesn’t affect your treatment plan.
Every breast cancer cell produces a protein called Human Epidermal Growth Factor Receptor 2 (HER2). Around 15–20 per cent of breast cancers overall express very high levels of HER2, which cause the cancer to grow more quickly. If your cancer is HER2+ve, you will be offered treatments like Herceptin which specifically target HER2 (see Chapter 11). HER2 receptor status is not recorded for non-invasive cancer (DCIS). If your cancer is ER-ve, PR-ve and HER2-ve, it is known as a ‘triple negative’ cancer.
The pathologist will look at your lymph nodes to see if they contain cancer cells. If there aren’t any cancer cells, your lymph nodes are described as ‘negative’. If there are cancer cells, your nodes are classified according to how much of the node is involved:
● Isolated tumour cells (ITCs): very small clusters of cells measuring less than 0.2mm.
● Micrometastasis: small deposit of cancer cells, measuring between 0.2mm and 2mm.
● Macrometatasis: large deposit of cancer cells, measuring more than 2mm.
Lymph nodes with ITCs or micrometastases are classed as negative. If your nodes are negative, you shouldn’t need to have any further treatment. Lymph nodes with macrometastases are classed as positive. Extra-capsular spread means that the cancer cells have invaded beyond the wall of the node. If you have positive nodes, you may need to have further treatment such as surgery and/or radiotherapy. This depends on how many of your nodes are involved.
If you have DCIS or primary breast cancer that hasn’t spread to your lymph nodes, it is very unlikely that you will have cancer elsewhere. However, if you do have cancer in your lymph nodes, there are some scans and blood tests that can be carried out to see whether your cancer has spread beyond the lymph nodes.
The National Institute for Health and Care Excellence guidelines (see here) recommend that only patients with large tumours or several involved lymph nodes should have extra scans to see whether their cancer has spread beyond the nodes. Most of the time, these scans are normal. It is rare for a scan to find distant disease in a patient without any symptoms of secondary cancer, such as bone pain or shortness of breath (see Chapter 23).
There are two scans that are routinely done:
1. A CT scan of your chest, abdomen and pelvis.
2. A bone scan.
Some hospitals use only a CT scan. It is important to understand that both of these scans cannot pick up individual cancer cells. A secondary deposit has to be large enough to show up, and this means that a normal CT or bone scan may still mean that there are sleeping cancer cells in your body. If you do get symptoms suspicious of recurrence in the future, your doctor may order scans to investigate further. The signs to look out for are detailed here and here.
At the moment, there aren’t any blood tests that can accurately tell whether your cancer has spread or will spread in the future. If you have secondary breast cancer, your oncologist may measure tumour markers (proteins called CEA, CA15-3 and CA125). The results of these blood tests can vary greatly from patient to patient, depending on the amount of disease they have and the treatment they are having. If your staging scans are normal, you will not have routine tumour marker bloods taken on the NHS. You may have them done if you are being treated privately, but the value of such tests in people with early breast cancer is questionable.
Prognosis is an estimate of the likelihood that your cancer will come back, and whether you will die from breast cancer. It is expressed in words (excellent, good, poor) or as a number (typically a percentage). It reflects your 5- or 10-year survival rate, which is the likelihood that you will still be alive in 5 or 10 years’ time. If your 10-year survival rate is 90 per cent, this means than out of 100 women that are the same age as you, with identical breast cancers and identical treatment, 90 of them will still be alive in 10 years’ time. Your doctors will use your estimated prognosis to decide what further treatments you should have to reduce the risk of your cancer coming back.
Asking your doctor what your prognosis is can be scary, and finding out can be even scarier. It may all seem too much and you might not want to know. Your doctor will be guided by you, and should only tell you what you’re ready to hear. If you do find out, you must remember that it is only an estimate. Your doctor has no way of knowing for certain whether your cancer will come back in the future.
Your doctor needs to know what your estimated prognosis is so they can decide whether to recommend other treatments such as chemotherapy. As we explain here, not everybody needs chemotherapy, and not everybody who has chemotherapy will benefit from it.
The methods used to estimate your prognosis are based on large research trials that have looked at the survival of hundreds and thousands of people with breast cancer. In order to work out your chance of being alive in 10 years’ time, these trials had to follow patients up for at least 10 years. This means that your actual prognosis may be better than your estimated prognosis, because new treatments are always being developed that improve your survival from breast cancer, but we don’t yet have the 10-year follow-up data for those treatments.
The main factors used to work out your prognosis are your cancer type, size and grade, whether it has spread to your lymph nodes, whether it is sensitive to oestrogen (ER+ve) or Herceptin (HER2+ve), as well as your age and whether or not you have been through the menopause. Your doctor gets all this information from the pathology report (see here) after you have had your surgery, and they will be able to tell you what your prognosis is, if you want to hear it, when you go back to clinic to get your results after your operation.
Generally, small, low-grade, node-negative, ER+ve and HER2-ve cancers have a better prognosis than larger, higher grade, node-positive, triple negative and HER2+ve tumours. However, additional treatments, such as chemotherapy and Herceptin therapy, are given to improve the prognosis of these cancers. In fact, many people with a ‘poor prognosis’ cancer go on to live a long and heathy life. There are also things you can do to improve your prognosis, such as staying active and exercising, and we talk more about this in Chapter 18.
There are several methods used to estimate prognosis, and some are more accurate than others. None of them will tell you for sure whether the cancer will ever come back, but they will give you some idea of how likely that is:
This is a quick and simple calculation that uses the size of your cancer, its grade and the number of positive lymph nodes to give a rough estimate of your prognosis. Your NPI will either be excellent (below 2.4), intermediate (between 2.4 and 5.4) or poor (above 5.4).
Your breast cancer stage combines two things: how big your cancer is and whether it has spread. There are four stages which are each subdivided into several sub-stages, from Stage 1 (small with no or minimal spread to lymph nodes) to Stage 4 (secondary or metastatic breast cancer). The staging system is mainly used in America, where they have just introduced a new version which takes into account your hormone and HER2 receptor status. In the UK, your surgeon may use a similar system called ‘TNM’ (tumour size, number of positive nodes and presence of metastases).
If you are interested in the details of how to work out your stage, see the ‘breast cancer stages’ section of the Breast Cancer Care website: www.breastcancercare.org.uk/information-support/facing-breast-cancer/diagnosed-breast-cancer/diagnosis/breast-cancer-stages
For a more precise estimate of your prognosis, your doctor uses a mathematical model. In the UK, doctors tend to use PREDICT while in the USA, doctors tend to use Adjuvant! Online (see here). Both were developed by analysing the outcomes of thousands of women and then testing the data on thousands more.
PREDICT analyses the details of your cancer as well as your age and how your cancer was detected. It calculates your 5- and 10-year survival based on the following scenarios: surgery (and radiotherapy if needed), additional hormone therapy and additional chemotherapy (with Herceptin if your cancer is HER2+ve). You can use the PREDICT website yourself to see your own results: www.predict.nhs.uk
Only about a third of all patients with breast cancer are offered chemotherapy (see Chapter 10). Your doctor needs to weigh up the benefits (reducing your chance of developing, and dying from, secondary breast cancer) against the risks (serious side effects which can sometimes be permanent – and, very rarely, fatal).
Your doctors use your estimated prognosis to decide whether you are likely to benefit from chemotherapy. In the UK, doctors use your PREDICT results. Let’s say, for example, that your PREDICT score gives you an estimated 10-year survival of 70 per cent with no further treatment, 80 per cent with hormone therapy and 90 per cent with chemotherapy as well. Would you take a punt on chemo with these odds? Most people would, since chemo could increase your chance of being alive in 10 years’ time from 80 per cent to 90 per cent – a 10 per cent absolute improvement. If the figures were 90 per cent, 96 per cent and 97 per cent respectively, chemo might only increase your absolute chance of 10-year survival by 1 per cent.
Current recommendations are that chemotherapy should only be discussed if your benefit is 5 per cent or more, provided you are fit enough to cope with it. If your predicted benefit is less than 3 per cent, you will not be offered it as it could do more harm than good. If your benefit is between 3 per cent and 5 per cent, it is harder for your doctor to make a decision because your benefit from chemotherapy is questionable. Research has shown that lobular cancers don’t respond well to chemotherapy, probably because they are slow-growing, and even if PREDICT shows a greater than 5 per cent benefit, you may still only be offered hormone treatment, which we know is highly effective in lobular cancers.
There are a couple of extra tests that your doctor can request to help them if your benefit is borderline:
This is a protein that acts as a marker for how quickly your cancer is growing, and it’s detectable on the biopsy specimen. It isn’t routinely tested in the NHS, but is sometimes used as part of a research trial or to help your doctors decide whether you need chemotherapy if your benefit was borderline. A high Ki67 score (above 10 per cent) may increase your likely benefit from chemotherapy.
There are several tests now available that analyse your breast cancer tissue (after your surgery), such as Oncotype Dx. This looks at a set of 21 genes to predict how well your cancer will respond to chemotherapy, and the chance of your cancer returning. Patients with a borderline predicted benefit can have the Oncotype Dx test for free on the NHS. You are given a recurrence score: low, intermediate or high. A large trial called TAILORx showed that if your score is high, you should be offered chemotherapy. If it is low or intermediate, you should be able to avoid chemotherapy, although individual factors such as your age will also be taken into account. If you are not eligible for Oncotype Dx, you can ask your doctor to order the test on your behalf and pay yourself (it costs around £2,000 to £3,000).
It can be very hard to come to terms with a diagnosis of breast cancer, especially when you find out what your prognosis is. It’s one thing to read about it, but how on earth do you cope with that knowledge? You may, like us, experience anger, guilt and depression that gradually fade into acceptance as your treatment progresses. Sometimes, though, feelings of anxiety and depression can be overwhelming. In the following chapter, we share how we coped.