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I was told I had secondary breast cancer, but nobody explained what that meant

When Anne found a lump in her neck, she had no idea it could be linked to the breast cancer she had years earlier. She tells us how she got the news, and how secondary breast cancer affects her today.

When Anne found a lump in her neck, she had no idea it could be linked to the breast cancer she had years earlier. She tells us how she got the news, and how secondary breast cancer affects her today. 

I wasn’t offered chemotherapy or radiotherapy 

In 2012, I had my first routine mammogram. I was called back a week later, at which point I had another mammogram, an ultrasound and a biopsy – all on the same day. It became clear that something was wrong. 

My initial diagnosis was ductal carcinoma in situ (DCIS). It wasn’t actually confirmed as cancer, only as pre-cancerous (an early form of breast cancer). But because it affected a large area of the breast, they felt a mastectomy was the way to go. I was quite upset by that. It felt like using a sledgehammer to crack a walnut. 

After that, they checked some lymph nodes and did a sentinel lymph node biopsy. It came back clear, meaning the breast cancer has not spread to the lymph nodes, and the consultant said I didn’t need any further treatment.  

I'd almost wished I'd been more ill. I lost a breast, and I was going back to work after three weeks – it didn’t feel right. 

When the pathology results came back, it showed the DCIS had become invasive. This meant the cancer cells had spread outside the ducts, into the surrounding breast tissue. However, because I’d had a full mastectomy and my lymph nodes were clear, it wasn’t deemed necessary to offer me any chemotherapy or radiotherapy.

The consultant said ‘You’re cured’, so I didn’t give it any further thought. In my mind, I was ok. 

Three years after my mastectomy, a lump appeared 

Then, around Christmas 2015, I felt a lump above my collarbone. 

When I saw the doctor, he said the lump was unlikely to be cancer as I’d been on tamoxifen for three years to reduce the risk of breast cancer returning. Until then, it had never really crossed my mind that it could be cancer. As it had been there for a few weeks, however, he fast-tracked me to see a head and neck specialist. 

I had a fine needle aspiration (FNA) and was told to stay in the hospital to wait for the results. When I was called back, I could see there were a lot of people waiting for me and I knew it wasn’t going to be good news. 

It was cancer, but they weren’t sure what kind. The consultant said it was most likely to be breast cancer.  

I didn’t know anything about secondary breast cancer 

I was so confused – it wasn’t on my breast, it was my neck. When he said it could be secondary breast cancer, I didn’t know what that meant. I thought, ‘Had I got a tumour in my other breast?’. Nobody had explained to me at my primary diagnosis that breast cancer could spread.

I went for another biopsy, and the ultrasound technician admitted to me that he could tell from what he’d seen that it was breast cancer. It was this technician him who told me it was incurable. He explained that while secondary breast cancer could be treated, it couldn’t be cured.

All this information came at me out of nowhere. 

When my original consultant wanted to see me, I asked whether the cancer had come back. She explained that it never really went – it was always there, and it had come from somewhere that just hadn’t been found before. 

I asked why nobody had said there was a chance there was a chance of it coming back. I suppose they don’t want you to be worried about it for the rest of your life, but I would rather have been prepared. 

My tumours have caused permanent nerve damage 

Scans showed that the cancer had spread to my lungs, so I started docetaxeltrastuzumab (Herceptin) and pertuzumab. Within six months my scans showed almost no evidence of disease. 

The lump came back in 2018 and I had radiotherapy to treat it. However, a year later, it returned. 

Covid-19 and lockdown meant that all my appointments were done over the phone, so I had to call up and explain that the lump on my neck was getting bigger, and that another lump had appeared higher up. 

It progressed to the point that I couldn’t feel anything in my jaw. 

Despite this, my consultant didn’t want to stop my current treatment because it would mean moving on to the next line of treatment (chemotherapy), and that would make me vulnerable during lockdown.

I woke up one morning and my right eye was droopy. The tumours had got so big that they were pressing on a nerve. The damage is done now, I have something called Horner syndrome. 

People who haven’t had cancer don’t know what it’s like 

I’ve now been switched over to trastuzumab emtansine (Kadcyla), which had not been NICE approved when I was first diagnosed. There is also another line of treatment available for when that stops working. I am really grateful that I have access to medication that keeps me well – but it still has a huge impact on my life. 

Sometimes, even my close family don’t seem to understand what’s going on. They’ll invite me to things, forgetting I have ongoing treatment. They don’t see the blood tests I have to go for every three weeks, or my scans, or how often I have to get rigged up to a drip. 

If I looked more ill, I think they would remember. People don’t understand that not everyone loses their hair when they’re on chemotherapy, and that not every person affected by cancer looks the same. 

That’s the thing about cancer, though – unless you live it, you don’t really know what it’s like. 


Most breast cancers don’t come back after treatment, but it's important to know the signs and symptoms in case they do. 

Signs and symptoms to be aware of

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