Hayley’s barely recovered from surgery when she speaks to me, and she warns me in her email that it didn’t go as well as she’d hoped. First diagnosed two years ago, Hayley, now 39, has a lobular breast cancer diagnosis.
Unlike ductal breast cancer, the most common form, which starts in breast ducts (the tubes that transport milk to the nipple), lobular breast cancer starts in breast lobules (the glands that produce the milk). Invasive lobular breast cancer, where the cancer cells invade surrounding breast tissue, is the second most common form of the disease, but worryingly few women have heard of it. This is perhaps because, unlike the breast cancer we are all looking for – the lump you find in the shower, for example – invasive lobular breast cancer may form a web or a thicker-feeling area of tissue.
It can be harder to spot, both for patients and clinicians. This was Hayley’s experience.
“My consultant noticed my left breast felt a little bit firmer and he asked me if I’d had an accident or bashed it in any kind of way,” she says. “I hadn’t, so he asked me to have a mammogram and an ultrasound, which didn’t show anything. He said that although he was 99.9% sure there was nothing there, he wanted to do a biopsy. I can’t tell you how grateful I am that he did that, because it came back as positive for lobular cancer. That biopsy saved my life.”
Lobular breast cancer might first present itself as a new or unusual ‘thickening’ or ‘dimpling’ in the skin. But even if you visually detect it it can be hard to spot even in mammograms, ultrasound or MRI scans. That’s why women with lobular breast cancer are sometimes diagnosed later than other cancer patients.
“I had a CT scan, MRI scan, more mammograms and ultrasounds, and I went for a specialist tomosynthesis scan, which was specifically for dense breasts,” Hayley says, “and none of them showed the cancer.” When surgeons removed the cancer, they told her that it turned out to be 10 by four centimetres.
Understandably, the diagnosis was life-changing for Hayley.
“I was very frustrated and scared,” she says. “I was terrified. As soon as I got the diagnosis, I wanted it gone. My husband was completely floored by it as well.
“My daughter was probably four or five at the time: when I went for treatment, I showed my consultant a picture of her and told him, I don’t want this to be her story. I don’t want her to grow up without a mum.”
Research shows that lobular breast cancer is not well known by patients or clinicians, but statistics now show that it is more common than ovarian or skin cancer, both of which are often in the headlines.
Dr Fiona Baber, a GP of 26 years, has also had a diagnosis, but had never heard of it before then.
“When I finally decided I wanted it checked out, my GP couldn’t feel it either and told me to come back in one month if still worried,” she says. “I decided so I wouldn’t ‘waste anybody’s time’, I would have a private mammogram, which I had done, but I was told it was totally normal. Luckily, the radiologist decided to do an ultrasound.
