If I’d known more about the signs and symptoms of secondary breast cancer, I wouldn’t have doubted myself

Now, Charli hopes that her experience will help others be more aware of the symptoms of secondary breast cancer. She wants more people to feel confident raising concerns when they feel something is wrong.

Can you tell us about your primary diagnosis?

In Spring 2016, a friend of my husband's was diagnosed with breast cancer. As he was telling me her story, I realised that at 32 years old, I’d never checked my own breasts. Her story made me realise how important it was to check regularly, even at my age.

I never expected to actually find anything, but I did. There was a small lump on my rib, just below my left breast.

At this point, I wasn’t really concerned, but I made a doctor’s appointment just in case. The GP said it would likely be a cyst, but they had to refer any lumps to the hospital to be checked.

Following a mammogram and ultrasound, it came as a shock when they took a biopsy. My husband came with me to the appointment. I told myself everything would be okay, but I was wrong. I was told my “cyst” was, in fact, breast cancer.

How was your treatment and recovery for primary?

Fortunately, things weren’t as bad as I’d thought. I’d caught the cancer early and it hadn’t spread to my lymph nodes, and a test found that my chances of a recurrence were small.

I didn’t need a mastectomy or chemotherapy, just a lumpectomy and 3 weeks of radiotherapy. It was still a traumatic experience, but it was a lot better than I’d expected. In my mind, I’d got cancer out of the way.

What symptoms of secondary breast cancer did you experience?

In 2022, I started experiencing a dull ache in my arm. The pain got worse and more constant, so I made a doctor’s appointment in January 2023. I explained I’d had the pain daily for about a year and hadn’t injured it. They gave me some exercises for tendonitis, a condition where the tendons become irritated and inflamed, but the exercises did absolutely nothing.

The pain began to spread around my neck and shoulders. I tried my best to live with it, but it was making life impossible. In September, I returned to the GP. I explained that I could no longer sit at my desk for long periods of time, I’d given up the gym, and the pain in my arm, neck and back was now unmanageable. I told him I was concerned the pain was related to the cancer, but they said it was likely to be a nerve problem.

That evening, I looked up my symptoms and saw there were lymph nodes in the area above my neck where I'd felt a lot of tenderness. I texted the GP and said, again, that I was concerned something more sinister was going on.

They told me that they didn’t see anything of concern, which put my mind at ease. After all, my GP had studied for years and knew my history of breast cancer. He wasn’t worried, so why should I be?

What happened next?

In January 2024, a year after I first reported the pain to my GP, I returned to the surgery. I couldn’t take the pain any longer. I mentioned that the area of tenderness above my collarbone now had lumps, and finally, I was referred to the hospital.

The appointment date for my biopsy results came, it was on my husband’s 40th birthday. We tried to convince ourselves it would be good news, it might be the best birthday present ever! It wasn't.

I was told it was cancer. The same cancer I’d had in 2016 that they thought hadn’t spread, that was unlikely to return. The scans showed that the cancer had spread to my lungs, liver, lymph nodes and, unsurprisingly, my bones.

What did you know about secondary breast cancer at that time?

Although I had treatment for primary breast cancer in 2016, it wasn't until February 2024 that I learnt the word "metastatic." I now know that the symptoms I went to the GP with are common symptoms for metastatic (secondary) breast cancer. In fact, they’re the first symptoms shown when you search on Google.

If I’d known that persistent pain without injury, backache, or tenderness in the lymph nodes could be signs of secondary breast cancer, I would have gone straight to my breast care team. I wouldn’t have waited or doubted myself. That’s why I believe so strongly that people who’ve been treated for primary breast cancer should be told what to look out for.

What support did you get?

The emotions of a terminal diagnosis are too overwhelming to face alone. But there were so many things I didn’t want to say to loved ones. I knew I wasn’t the only one facing this, so I searched online for charities and came across Breast Cancer Now. They had a weekend planned in Bristol for people under 45 with secondary breast cancer. I booked myself in, not knowing what to expect.

It was a relief to talk to women who had the same worries. So many others had also missed an early diagnosis because they hadn’t been listened to. I no longer felt let down for myself, I felt let down on behalf of dozens of women who had been ignored.

I am most grateful to Breast Cancer Now for showing me that I wasn’t alone. And I’m so thankful that I had the opportunity to meet all these wonderful, vibrant women. 

What advice would you give to someone else in your position?

I don’t want to scare anyone who’s had primary breast cancer, but I really hope my experience can help others feel more confident raising concerns. You know your body, and if something doesn’t feel right, you should speak up and be heard.

My most heartfelt advice is this: Get back to your beautiful life and live it fully. Don’t let the fear of recurrence overwhelm you.  It can drain your energy and your joy. None of us can control what might happen, but we can learn the signs to look out for.