From the age of 50, Emma Amos attended breast-screening appointments every three years without fail. She also always checked herself for lumps.

In 2018, she noticed a strange thickening in her breast and pushed for further investigations.

The then 54-year-old was shocked to be told she had breast cancer and even more taken aback to learn it likely had been growing for up to seven years. It meant that two mammograms had missed her tumour.

The actress was diagnosed with lobular breast cancer, a type that is difficult to detect with standard X-rays. Additionally, there’s often no lump, making it harder for women to find during self-exams.

Lobular breast cancer (also called invasive lobular carcinoma) is when disease starts in the milk-producing gland, or lobules, of your breast and has spread into surrounding breast tissue. There are around 8,000 women diagnosed a year, and it can develop at any age but is most common in those aged 45 to 55.

“I lifted my arm and my breast just changed shape, weirdly,” Emma told i. “I kept looking at it and thought, ‘That’s not right’. With my last mammogram the year before, they’d thought they’d seen something and had me back for a supplemental ultrasound but that was clear. So because I’d had that call back, I thought I should really get it checked out.”

It was a more detailed MRI that picked up the tumour. Initially, Emma’s cancer was classified as stage 1, with the scan having found a tumour of 5cm. However, when she had her mastectomy, doctors discovered it was in fact 11cm and had spread to eight lymph nodes.

With a stage three diagnosis, she was given dose-dense chemotherapy as well as radiotherapy.

“Most lobular breast cancers are found at stage three, because that’s when it’s grown so big that there is a distortion or a dimpling in the breast,” she said. “And it’s very treatable if caught early. But 30 per cent of lobular breast cancer is missed on a mammogram. And if you have dense breast tissue, they only pick up 11 per cent of cases.

“It’s drummed into us to be checking our breasts for lumps but we should also be checking the shape and general appearance. Look in the mirror, put your arms up, has the shape changed? Is there any puckering?

“It’s about being breast aware, knowing what your boobs are, so you can pick up on subtle changes.”

When Emma Amos was diagnosed with lobular breast cancer she was inspired to start a charity for the cause (Photo: Emma Amos)
When Emma Amos was diagnosed with lobular breast cancer she was inspired to start a charity for the cause (Photo: Emma Amos)

New charity

Emma, from Hammersmith, west London, has clearly become very knowledgeable about the disease – but initially she found there was a real lack of information.

She connected online with another lobular breast cancer patient, Claire Turner, who was hoping to start a charity. The pair, along with six other sufferers, formed Lobular Breast Cancer UK in 2019.

“When I was diagnosed, I realised there was no support, no information out there,” said Emma. “The eight of us, when we got home and Googled it, we all searched for lobular cancer. There wasn’t a Facebook page for it.

“So we decided to set up the charity because we wanted to work hard to try to raise awareness.”

Lobular makes up about 15 per cent of all breast cancers, and is the second most common form of the disease, according to Cancer Research UK. “Despite this, it only gets 0.1 per cent of the global budget for research into breast cancer,” said Emma.

Lobular Breast Cancer UK provides information to the public, clinicians and researchers, support, lobbies to change UK wide policy and treatment guidelines and raises funds for research.

‘I assumed breast cancer would cause a lump’

Diana Sichel discovered visible dimple and skin tethering on her left breast (Photo: Diana Sichel)
Diana Sichel discovered visible dimple and skin tethering on her left breast (Photo: Diana Sichel)

Diana Sichel had the all clear from a mammogram in May 2021. But just seven months later she was diagnosed with a tumour of just over 4cm.

With the disease at stage two by then – having spread to her lymph nodes – just like in Emma’s case, her lobular breast cancer was likely was not picked up by the scan.

The 72-year-old had been regularly checking her breasts for years. “I assumed breast cancer would cause a lump, so this was the main sign I was looking for when self-checking,” she said.

But then she noticed a visible dimple and skin tethering on her left breast whilst looking in the mirror. “The skin on looked like it was pulled. I thought it could be due to age, or it might have been caused by wearing an old bra from the broken wire.”

Nevertheless, she went to her GP to get checked out. An ultrasound and biopsy confirmed the diagnosis.

Facing an eight-week wait to see the consultant, Diana, from Oxfordshire, decided to go private through GenisisCare. Diana had a mammoplasty, an operation to remove the cancer and then reshape the breast by removing skin and breast tissue, followed by radiotherapy.

Despite suffering some complications with lymphoedema and infections, along with some joint aches, Diana has made a good recovery. She currently takes chemotherapy tablets to improve her long-term outcome. “I’m living with uncertainty, but otherwise, I feel very well and optimistic about the future,” she said.

“The really important thing is to know your breasts, and if you have any concerns, to get checked out as early as possible. Don’t delay seeking medical support or put it off because of your busy lifestyle.”

Signs to look out for

Harleen Deol is a breast surgeon specialising in the diagnosis and management of breast cancer. “If you have a cancer that’s not clearly seen on a mammogram, it’s really down to women’s self-examination to pick this up,” she said.

“The key thing we want people to be more aware of is that it doesn’t present as a firm hard lump as women have been told about for years and years. We want women to look out for an area of thickening or swelling of the breast and changes in the nipple. And also to look for any subtle changes in skin.”

The tumours are harder to see on scans because they grow more like a spider’s web in straight lines among the soft tissue in the breast and rarely form a lump. “Additionally, it can often occur in multiple areas of one breast or in one breast,” explained Miss Deol.

“And because it doesn’t present as a small little lump we often find it’s a bit bigger than the other breast cancers when diagnosed.”

Miss Deol stressed that not all thickening of the breast will be cancer, but all cases should be checked out.

She said that nowadays breast cancer treatment is very individualised to the patient. “We don’t just look at whether it’s lobular or ductal, we look at the biological markers – whether it’s oestrogen receptor-positive or progesterone receptor-positive and we really individualise care according to the type of patient and what type of breast cancer they have.”

Symptoms of lobular breast cancer

Signs and symptoms of lobular breast cancer can include:

  • A tugging sensation in your breast
  • A change in the skin of your breast such as dimpling, puckering, or a dent
  • Stabbing pains or pain that is there all of the time
  • A thickening area in your breast
  • New fullness or swelling
  • A persistent itch on the skin or inside your breast
  • Changes to your nipple: Inverting or ticking in a different direction, as well as discharge or oozing

Remember that if your doctor has told you that you have lobular carcinoma in situ (LCIS), you don’t have invasive lobular breast cancer. It means that the cells inside some of the breast lobules have started to become abnormal.

For more information about Lobular Breast Cancer UK visit here.

Do you have a real life story? Email [email protected].

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