Meet Emma. She’s one of the women featured in our ‘If I had more time’ campaign, which raises awareness of secondary breast cancer, and how our research into the disease can help people like Emma have more time.
Emma tells us about her experience with secondary breast cancer, why our research is so important, and what she would do if she had more time.
Tell us about your experience of secondary breast cancer
I was first diagnosed with primary breast cancer in 2013, when I was 31. I had all of the usual treatments for that, including chemotherapy, radiotherapy, lots of surgery, and also IVF before any of that began. We created three little embryos called Wynken, Blynken and Nod.
I was sent away with a drug called Tamoxifen and I was on that for a year before I started feeling really unwell with fatigue and tiredness. I had a routine, regular checkup at the hospital, and the doctor seemed to be really careful, checking very thoroughly. She was worried about something so she sent me for some further test and exams, and I ended up having a needle biopsy into my lymph nodes in my clavicle. That came back positive for cancer, and they did more investigations and found that it was in my lungs and my liver and my bones. It was not curable, and that’s what’s called secondary or metastatic breast cancer.
What was your experience of diagnosis?
It’s different from primary breast cancer in that everyone says, “Oh, it’s the best one to get! We’ll give you 8-9 months of treatment, and you’ll get better and go back to living a normal life.” With secondary breast cancer, they don’t tell you that. They tell you that they can treat you but they can’t cure you - and, honestly, it felt like a death sentence. I felt like I was terminal, really, from that first appointment. I didn’t expect to see the end of the year.
When I got my secondary diagnosis, it was a slow realisation over quite a long period of tests and investigations and consultations that I wasn’t just not getting back to normal because of my primary treatment - I was actually becoming quite unwell. Because it was such a slow process, when they said it was metastatic, I think the shock for me was that it was in so many different places - lungs, liver and bones! You kind of expect a local occurrence or maybe it’s popped up in a lymph node, but it was everywhere and that was kind of scary.
There were a lot of mixed emotions. I was really scared. Upset for my family. Very angry that I’d been through all that treatment, ended up with lymphedema in my right arm – and for what? They told me that the cancer would go away, and it hadn’t. They sent me away on this horrible drug that I hated taking every day, told me that it would keep the cancer away and it didn’t. I was angry and upset and frustrated, and probably terrified as I wasn’t ready to die – I wasn’t ready to be sick either.
What is life like now you’ve had that diagnosis?
This has changed a lot over time.
When you’re first given a new diagnosis of any kind of progression, initially you’re given a lot of appointments and everything becomes really intense and busy. You’re in and out of the hospital a lot. There are lots of scans to make sure you’re responding to the treatment and if you’re not you might need to try something else. There’s a lot of anxiety and it really takes over your life. It means you don’t have a lot of time to think about things.
Then life calms down again, and the medication is working and so it falls into a routine. You go into hospital every two/three weeks, and you pick up a rhythm of normality - you find a new normal. But it never lasts. That’s the thing with secondary breast cancer - the new normal doesn’t stay. After 18 months of oral chemotherapy, the space around my lungs started to fill up with fluid, making breathing difficult, and I had to have that drained. I was then put on a weekly IV chemotherapy, which meant a different routine. Now I’m on a combination of treatments called letrozole and palbociclib - I’ve been on that since 2017. I actually campaigned to access palbociclib, as it wasn’t available through the NHS. We went to see the big boss of Pfizer - he told me that if NICE did approve palbociclib then it wouldn’t be available for people like me who’d already had 2 types of chemotherapy already for their secondary breast cancer.
It’s hard because in your 30s you’re trying to fit a bit of life around all that. But it’s also made me seize opportunities in a different way. My partner and I still live on a boat but now we have a home mooring and keep chickens, we have a nice life.
Why did you want to be part of this campaign?
If people with secondary breast cancer didn’t get shut out of the broader breast cancer conversation, more people would be aware of it as a disease, and maybe they’d be more prepared. Maybe there would be more support. Maybe there would be more research. Maybe outcomes would be better.
If more people understood that breast cancer isn’t the best cancer to get, that actually 31 people die every day of secondary breast cancer in the UK, maybe people would be taken more seriously when they go to see their GP with symptoms.
If more people knew that breast cancer was still the one of the leading causes of death in women under 50 in the UK, maybe fewer young women would find getting a diagnosis so tough.
Why is the research of BCN so important to you?
If there was more research around secondary breast cancer, maybe I wouldn’t have lost so many friends, and more of us could probably live for a lot longer. That would be a big deal.
What would you do if you had more time?
If I had more time I would go and see more islands, and canoe more rivers. I’m gradually ticking islands off: I’ve been to the Scillies, the Isle of Man, Ireland and Northern Ireland, and I want to go back to Shetland!
My coping mechanisms have really changed over time, but the thing that has always been consistent is being outside. After my primary treatment finished, we got in a red Canadian canoe and canoed from the source of the Thames into central London, camping on the river. After lockdown finished, we got on our bicycles and cycled with camping equipment all the way to Glastonbury - over the Mendips on a Brompton was not very fun!
If there was one thing I could control, I would get involved with NICE drugs approvals and tell them what to do!
Around 61,000 people are living with secondary breast cancer in the UK
That's why we're funding research to buy people like Emma more time to live their lives to the fullest.