WE’VE BEEN THERE.
The moment you find out that you have breast cancer, your life changes forever. Your first reaction is likely to be one of shock, horror or disbelief. You may worry about what the future holds, and whether you will live long enough to see it. Most people who get breast cancer in the UK go on to live for many years and most do not die of breast cancer, but some will get a recurrence. However long you live for, you will never return to being a non-cancer patient.
For the rest of your life, you will be in one of two phases:
1. Having active treatment. This will include some or all of surgery, radiotherapy, chemotherapy, hormone therapy and other targeted therapies.
2. Living after active treatment. This is sometimes known as ‘survivorship’. Your life will be interrupted by periodic hospital appointments, mammograms or scans, adjusting to the side effects of breast cancer treatment and coping with the possibility that your cancer might come back.
If your cancer comes back – called ‘secondary cancer’ – you enter a third phase, and this can happen even 20 years after your first diagnosis. This can, of course, be very upsetting, and we cover this in detail in Chapter 23 (here).
The first couple of weeks after diagnosis can be a period of uncertainty and confusion. You have to deal with the fact that you have got breast cancer, as well as taking in a lot of information about the treatments you need. Friends and relatives may ask you a lot of questions that you don’t yet know the answers to. It can be hard to believe you have cancer because you don’t feel (or look) ill. This is because, unless you have secondary breast cancer, the only symptom you are likely to have is a lump (and some people don’t even have that). Unlike some other kinds of cancer, early breast cancer doesn’t make you feel tired or short of breath or generally unwell.
This is often the first question that people ask. The important thing to remember is that getting breast cancer is not your fault. The two biggest reasons why women get breast cancer are simply because they are women, and are getting older. Most breast cancers happen in women over the age of 50. Your breasts are made up of glandular tissue and fatty tissue. If your breasts have more glandular tissue than fat (known as ‘dense breasts’), this can also increase your risk. All of these things are outside of your control. In a nutshell, most breast cancers are sensitive to the female hormone oestrogen, and the older you are, the more oestrogen you have been exposed to in your lifetime. The lifetime risk of a woman developing breast cancer is 1 in 8. While you are in your twenties, your risk of developing breast cancer is very small (1 in 2,000 women). During your sixties, your risk is higher (1 in 15 women).
There are other lifestyle factors that have been proven to increase the risk of developing breast cancer, and these include: being overweight, not exercising regularly and drinking alcohol (more than the recommended guidance of two units a day), especially if you are post-menopausal. That being said, you can still get breast cancer if you are slim and exercise regularly, like we did.
There are other things that have been shown to increase the risk of breast cancer, such as taking the oral contraceptive pill or hormone replacement therapy (HRT) for many years, not breastfeeding your children or not having children at all. However, there is no way to prove that the reason you have breast cancer is because (for example) you took the pill when you were younger. For most of us, it is just bad luck, and again, it is not our fault. Men get breast cancer too, although this is rare (the lifetime risk of a man developing breast cancer is 1 in 870). We have written a separate chapter (Chapter 20, here) specifically for men with breast cancer.
A very small proportion of breast cancers, around 5 in every 100 cases, are linked to a strong family history of breast cancer, in which an altered (‘mutated’) gene is passed from a parent to a child. The most well-known mutations are in the BRCA1 and BRCA2 genes. An altered BRCA gene means that you have a 60–80 per cent chance of developing breast cancer and a 10–60 per cent chance of developing ovarian cancer in your lifetime. Other rarer genetic mutations include the TP53 gene and conditions like Peutz-Jegher syndrome and Cowden’s syndrome. If several people on one side of your family have had breast or ovarian cancer below the age of 50, the altered gene might run in your family. Your GP or surgeon will be able to advise you whether you might be eligible for a gene test following genetic counselling. A full account of BRCA testing and what it involves is beyond the scope of this book, but the charity website Breast Cancer Care (www.breastcancercare.org.uk) is a good place to start looking for accurate information.
On the day you are diagnosed, you will know very little about your own breast cancer. You may have seen family or friends go through treatment, but they are not you. Even if you have done a lot of reading beforehand, have looked after people with breast cancer or are a medical expert in breast cancer yourself (like Liz was), you have never been a breast cancer patient before. And that is a completely different ball game.
At this stage, you may just want to sit back, go with the flow and let your medical team treat you without asking many questions. However, you may want to find out everything you can about breast cancer. You probably don’t even know where (or what) to start reading – or what (if anything) to start worrying about. Even if you do not actively seek out information, you will soon become an expert in how you feel, how you react to good and bad news, and how your body tolerates different drugs and procedures. In that sense, most breast cancer patients become ‘experts’ within a few months of their diagnosis.
We are both doctors – Trish is a GP and Liz is a breast cancer surgeon. We met on Twitter in July 2015 and became ‘virtual chemo buddies’ for breast cancer treatment, which we began (in different towns) in the same week. We first met in person six months later, which is when we had the idea for this book.
Between us we have had almost every kind of breast cancer treatment. Because we have both had breast cancer, we know, broadly speaking, what you are going through right now. And while we do not know exactly what your own personal circumstances are, we know what it’s like to have your world collapse around you the moment you get your diagnosis, leaving you feeling powerless and alone.
But you are not alone. We wrote this book because we want to help people with breast cancer. This is the book we wish we had been able to buy the day we were diagnosed. Doctors tell you what will happen to you, but it is patients who will show you how to cope. We want to walk you through breast cancer, from beginning to end, and share the tips and tricks that helped us cope, both mentally and physically. We explain the main treatments that you will be offered, why they are being recommended to you and how they might make you feel. We talk about body image, relationships and sex, and how to stay healthy when treatment ends. We hope this book will serve as a companion and a guide to what is coming over the new few weeks, months and years.
There are many sources of information about breast cancer – including websites, books, blogs and newspaper articles. This book is not intended to replace all the other information out there. Indeed, it can be incredibly helpful to browse the websites of different cancer charities and to read patient blogs to get a real-life account of what a certain treatment might be like (see Liz’s blog – liz.oriordan.co.uk – or simply search online for ‘breast cancer blog’). However, sometimes it feels like there’s too much information rather than not enough and it’s important to bear in mind that not all of the information you will come across is accurate, and some of it may be very scary.
This book is intended to complement your own exploration of the information out there. We suggest you use it as a map to guide you at the different stages in your journey. It would be impossible to cover everything, but we hope you can dip in and out and get most of the information you need in the beginning.
Before we start, here are our own breast cancer stories. A lot of the words we use to describe our cancers and the treatment we had may seem foreign at the moment, but later in the book we will explain what all the terms mean.
In 2015 I was 56 and working part-time as a GP, but my main job was as a professor doing research and teaching at the University of Oxford. I work in a field called ‘evidence-based medicine’, which seeks to ensure that the tests and treatments offered to patients are informed by scientific research evidence. I have a husband, Fraser, and two grown-up sons, Rob and Al, who were 26 and 23 at the time of my diagnosis.
In May 2015, I noticed blood in my bra, and realised that my left nipple had been itching and flaky for several weeks. All my previous screening mammograms had been normal. I was seen in the breast clinic and my surgeon thought it might be eczema. The mammogram showed some calcification near the nipple, and the ultrasound was normal. I had a nipple biopsy on the same day which found some ‘atypical’ cells, but no evidence of cancer.
Because of the calcification on the mammogram, I was called back three weeks later for an X-ray-guided vacuum biopsy of the calcifications. That biopsy found both ductal carcinoma in situ (DCIS) and invasive breast cancer. The receptor status was ER-negative, PR-negative and HER2-positive. I was treated privately because I had insurance. I had a mastectomy, implant reconstruction with a tissue expander and a sentinel node biopsy. The final pathology report described 2.7cm of ductal carcinoma in situ (DCIS) and a tiny 0.8cm grade 2, Stage 1 invasive ductal carcinoma, along with Paget’s disease of the nipple.
The total time from first being told I had breast cancer to getting my results after surgery was four weeks, but it seemed much longer! The good news was that my cancer was small and had not spread. The less good news was that, because my cancer was HER2-positive (a kind of cancer that can be aggressive), I needed to have chemotherapy and Herceptin treatment.
Ten days after my mastectomy, I started a three-month course of weekly chemotherapy with paclitaxel (Taxol). I wore a ‘cold cap’ which stopped my hair falling out. I had Herceptin injections every three weeks for a year, and my temporary implant was replaced with a permanent implant after I had finished chemotherapy. I also had two hospital admissions with a severe infection because chemo and Herceptin had lowered my immunity.
I felt generally rotten during chemo but managed to work (mostly from home) writing academic papers throughout this period. Getting back to all my duties at the university took many months – partly because of fatigue and partly because I kept getting coughs and colds. I was reluctant to return to work as a GP until I was fighting fit (since doctors can catch infections from their patients) and, as it turned out, I never did return to practising as a doctor, though this is mainly because my university job now keeps me fully occupied.
I’m a consultant breast cancer surgeon and spend my working life treating patients with breast cancer. My husband, Dermot, is also a surgeon. In July 2015, at the age of 40, I noticed a lump in my left breast. The mammogram was normal, but the ultrasound showed a suspicious 2.5-cm lump. The core biopsy showed a mixed ductal and lobular cancer which was ER-positive, PR-positive and HER2-negative.
Because my breasts were dense, I had an MRI scan. This showed that my cancer was actually closer to 6cm, which is often the case with lobular cancers as they can be hard to see on mammograms and ultrasounds. Within a week I started chemotherapy, which I can only describe as the worst hangover of my life without the dancing-on-tables-telling-the-world-you-love-them first. Chemo also threw me in to an instant menopause, which I really struggled with. My cancer shrank during chemo, and my last MRI showed that the cancer had actually disappeared.
I then had a mastectomy, implant reconstruction and a sentinel node biopsy. Two weeks later, just before Christmas, I learned that my cancer hadn’t disappeared. There was 13-cm of residual lobular cancer in my breast. The cancer had also spread to two of my lymph nodes. I had further surgery to remove more lymph nodes then a three-week course of radiotherapy and was started on tamoxifen for ten years. I developed chronic post-mastectomy pain syndrome, and my implant developed a hard painful capsule because of the radiotherapy, which I had replaced through another operation to try and help with the pain.
My treatment took nine months in total, and it took me a good six to eight months to get my energy levels back to a place where I could even think about operating and seeing patients again. In May 2018, I was diagnosed with a local recurrence in my armpit. I had surgery to remove this, followed by more radiotherapy and an operation to remove my ovaries so that I could switch to letrozole tablets.