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That’s me. Ellie, who does in fact have cancer. Diagnosed at 28 years old with grade 3, triple negative breast cancer and lymph node involvement with, most importantly, a high chance of being cured, because I finally checked my boobs and caught it early.
Ellie was 28 when she was diagnosed with breast cancer. After being prompted by a CoppaFeel! Instagram post, Ellie checked her boobs to find something that wasn’t normal for her. Ellie now offers us an insight into her story and her advice for the future.
Cancer has always been something that terrifies me. Like this mysterious disease that invades people’s lives with little or no warning. Despite having a paternal family history of both breast and gynaecological cancers, I always managed my anxieties around cancer by telling myself that I was somehow exempt from it. Don’t be silly, I would tell myself, you’re young. You’re healthy. You’ll be fine.
I never really checked my boobs. Sometimes I did, half-heartedly. It was a bit of a charade, really; I now look back and feel frustrated that I didn’t appreciate the need to check properly, despite having a clear family history of breast cancer and knowing that this meant I was at risk.
But, thankfully, social media was shouting at me to check. To explore my boobs properly. I’d heard of ‘CoppaFeel!’ but I actually wasn’t following the Instagram page at the time. Why would I need to? Avoidance at its finest. Fortunately, some of the people I follow shared posts and stories from ‘CoppaFeel!’ and I started to take notice. Hm, I would think, she looks young and healthy, but she had cancer.
One Saturday in February this year, after yet another post by CoppaFeel! made its way to my feed, I finally decided to fully check my boobs. I got in the shower, singing to songs, excited for the evening I had planned. DIY wine tasting with our friends. Whilst I mentally prepared the cheese and wine I was going to bring with me, I casually moved my fingers around my boobs, doing a quick scan. All good.
Keep going, I told myself, remembering a post that said to check near your armpit. So, I did. I lifted my arm and that’s when I found it. A small lump, secretly growing in my left breast.
After a quick call to my mum, filling her in and reassuring each other as a way of reassuring ourselves, I got ready. We went to the shops, we carefully chose our cheese and wine, we went to our friends’ house, we ate the cheese and we drank too much wine. I tried to be normal, to act normal, to think normal. But, of course, I couldn’t. I knew what I needed to do, and my boyfriend Matt and I drunkenly agreed that we would go to the doctors first thing on the following Monday.
We arrived just before 8am and were told to come back later that day. I was seen by a female doctor who asked some questions and did an examination. She didn’t seem particularly worried, but she told me she was referring me to the breast institute just in case. Just a precaution, no need to be alarmed. Phew. As she filled out the referral, she paused and then she told me she had changed her mind. She told me she was going to refer me under the fast track, suspected cancer pathway. This meant I would only wait a week to be seen, rather than two. She explained her reasoning, which is a little blurry now, but I think it was something to do with my family history and because of how the lump felt. She told me she still wasn’t hugely concerned, but that it was better to be safe than sorry.
I tell my friends and family pretty much all of my worries, so everyone knew. In fact, most of my support network had copped a feel of the lump themselves. I was surrounded by reassurance from my friends and family, by stories of lumps being nothing scary, and I felt torn between feeling pretty chill and absolute fear. There’s a lump, but it’s probably nothing. The doctor’s referring me on, but she’s not that worried. It was like there was a tug of war going on in my mind but neither side was stronger than the other. It was constant, back and forth.
My anxiety doubled when Matt and I walked through the doors to the breast institute waiting room. But then we were called to go through, and the wonderful staff squashed the worry and worked hard to put us at ease. I was initially examined by a nurse. She told me that it was most likely a fibroadenoma, a non-cancerous cyst, but that an ultrasound was needed to confirm this.
I had the ultrasound: a similar pattern followed, she checked, she said she wasn’t particularly worried, but she was hesitant due to the shape being atypical. She took a biopsy (they are not as scary as I had heard) and I left the breast institute under the impression that this was all precautionary.
I was booked in for a results appointment a week later. As we sat in the waiting area my stomach swarmed with butterflies and nausea creeped in. Ok, I thought, this is really happening. The surgeon walked in followed by a nurse. Their faces told me the news before their words did. “I’m sorry to tell you that you have breast cancer”.
Matt grabbed for my hand and squeezed it. I didn’t cry, I didn’t really feel anything. I just needed to know more. How bad is it and what the hell are we going to do about it?
I was told that I had caught the cancer early and that was a very good thing. I didn’t really have any symptoms at all, other than the lump. From the outside, my boob looked totally normal. If I didn’t check that day, the lump could still be growing inside me now, day by day, and I could still be totally unaware.
It was small, around 1.2cm, but it was grade 3 and aggressive. For this reason, they wanted me to have my lymph nodes biopsied and I also needed to have a mammogram and an MRI to determine if it had spread. They told me it was triple negative and, as I was so young, I would need to have a blood test to check if I had inherited breast cancer due to a genetic mutation. They said I would need to have 6 cycles of a chemotherapy regime called FEC-T. Then I would need surgery and then maybe more chemotherapy and probably radiotherapy.
I left the appointment and I rang my mum straight away. Still no tears. I text my friends and family and I thought I felt calm but, on reflection, I was completely numb. My family rallied around me that evening and whilst they tried to hide their tears from me, I noticed their swollen eyes. Their tears scared me. Why were they crying? Did they think they were going to lose me? I did eventually cry.
The fear gradually emerged, and I was terrified. But optimism tried to fight the fear. They had told me I had an excellent chance of being cured; that’s what I chose to focus on.
I had the scans, the biopsies, the blood tests and then I waited for my next appointments. A meeting with my oncologist. When we met, he told me the scans had shown that the cancer had not spread, and we talked through my chemotherapy regime and the potential side effects. Gulp.
I then had another appointment with another surgeon who told me there were cancerous cells in the lymph node they biopsied. She told me it didn’t really change much about my treatment; the plan was always to do a full lymph node clearance anyway. We didn’t talk about the staging of the cancer, they said they wouldn’t really know until surgery, but my mind started to explore the possibility that it could be worse than I initially thought. My breast care nurse was really helpful. She took the time to reassure me and I was able to challenge many of the dark thoughts that were trying to take over my mind.
My final bit of news was about the genetics test. My appointment was cancelled due to Covid-19 but I received a phone call instead. I wasn’t particularly bothered about the cancellation because I had already come to terms with the results being positive because of my family history and young age. Turns out I was wrong. I don’t have the genes they look for and this means they don’t know why I got cancer so young. Whilst that’s a little frustrating, it’s good news for a variety of reasons and my tears showed me how relieved I was.
The words, “you need to have chemotherapy” were never words I expected to hear. I was provided with endless details regarding potential side effects and how to manage them and where to get support and how to cope and, whilst it’s extremely helpful information, it took me weeks to be able to get to a place, mentally, where I could fully comprehend it and apply it to myself.
So, my friends and family rallied around me and helped me with the practicalities while it was too painful to do it myself. Microblading for my eyebrows, generous wig funds, chemo survival kits, a new diary, anything to help. And it did. More than I think they’ll ever know. But I also needed to focus on how to prepare psychologically. I knew I needed to step up and face this. I found a psychologist, provided by the wonderful charity Maggie’s, and we agreed to have sessions once a month to keep me on track. I invested in self-help books and reminded myself to apply the things I talk about with clients at work to myself. I decided to start a blog. I was getting there.
Because my medical team felt we had time, I was fortunate enough to go through fertility preservation before starting chemotherapy. Two weeks of pumping hormones into my body (Matt became an injection pro), endless scans and, finally, a short procedure to collect my eggs. After Matt had an awkward moment in a private room, my eggs were fertilized and after 5 days they were frozen. We now have little embryos waiting for us, if we ever need them. Kind of cute, kind of overwhelming.
By the time I started chemotherapy, I did feel ready. Coronavirus was just about taking over everyone’s lives and it was a bit of a weird time for us all anyway. We all had new realities. New fears. New restrictions. My first round was actually, really fine. I joined zooms, I exercised at home, I carried on as I would under these new circumstances that Covid-19 had inflicted on us. On reflection, I think for the first time since being diagnosed, I felt the sense of control I had been so desperately searching for. I moved from a passive position to an active one. From imagining that cancer was spreading through me second by second, to visualising chemo working its way around to weed it back. My side effects were minimal, I felt and looked the same. It wasn’t until a couple of days before my second cycle, almost three weeks later, that things became more difficult.
Hair loss is hard. For me, it was the first real, obvious, external factor that told me and those around me that I did indeed have cancer. I struggled with my thoughts, my identity, and my fears. Writing about it on my blog really helped (in fact, rambling away on my blog has helped me more than I knew it could), but the support from Matt, my family and my friends was incredible and, together, we got to a place of acceptance. I shaved my head before cancer took that choice from me and that night I ordered myself a second wig. Empowered.
I’m now a few days post cycle number three, my final round of FEC. Cycle two was unkind and I felt the side effects (fatigue and nausea were real) but my oncologist changed my medication around and cycle three has been much more manageable. My next cycle will be a new drug, the T of FEC-T, and the side effects will be different. But I’m not thinking about that yet. I’m trying to be in the moment and take things day by day.
The premise of my blog is about finding the beauty in this experience. When I found out I had cancer, I conceptualised it as so many different things. A bully. An imposter. A monster. But none of them felt quite right. Whilst the diagnosis literally shook my world and turned it on its head, I noticed an occasional pattern of thinking where I saw cancer as something that could be positive in my life. I’m not going to pretend that didn’t FREAK me out. How can cancer be positive?
But the positive thoughts persisted, and as the storm began to slowly settle, I could start to see more clearly. And that’s when it clicked; cancer, to me, is a weed. It grows in the body where it is not wanted. It spreads if you don’t cut it back. It has many negative connotations. But the experience of cancer can have positives. Weeds can be beautiful, in fact wild daisies are my favourite flower.
So, after a few weeks of adjusting and processing my diagnosis, I got to a place where I decided that I wanted to find the beauty in this experience. The beauty in what I like to call, the ‘c-weed’.
That’s easier said than done. And I am very aware that the incredible support around me has allowed me to feel safe to go to places mentally that I might otherwise avoid. So, my advice to those who find themselves in a situation similar to mine would be to use your support networks and seek more support if you need it. There are loads of charities, people online. Just nice, genuine people who want to help. You don’t have to do this alone. My advice to someone who knows someone going through cancer, or even a cancer scare, would be to acknowledge the value of your support. From an open conversation, to a priceless gift, to a thoughtful check in on WhatsApp. It goes a really long way.
I do think having cancer will change me, forever. I think I’ll be more anxious about my health and my future. But I think there will be good changes too. I will be a little more ‘YOLO’, more grateful for the small things, less stressed about the irrelevant things. I am aware of the strength I never knew I had. The love people have for me that I could never really see. The love I have for myself. I feel resilient, more insightful about who I am, how I feel and who I want to be. That’s the beauty in this experience. And I hope those things never leave me. But I sure as hell hope cancer does.
Thank you Ellie for sharing your story! If you have any concerns about unusual changes to your boobs or pecs, check out our advice on what to do if you’ve found something, which includes guidance on speaking to your doctor.
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