Nobody told me there was a chance of my breast cancer coming back

When Anne found a lump in her neck, she had no idea it could be linked to the cancer she had years earlier.

After treatment and surgery for primary breast cancer, the consultant said, ‘You’re cured’, so I didn’t give it any further thought. In my mind, I was ok. 

A few years later, 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. 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). It was cancer, but they weren’t sure what kind. The consultant said it was most likely to be 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.

Scans showed 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. 

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. 

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

Know the signs and symptoms

Most breast cancers don’t come back after treatment, but it’s important to know the signs and symptoms in case they do. If you’re living with secondary breast cancer, we’re here. Whatever happens.

Secondary breast cancer symptoms

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