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Dr Helen Coulthard was lying in bed one night when she noticed her breast was bulging in an unusual way that it never had before.  

Straight away she began searching for lumps and was somewhat relieved when she could not feel any bumps or swelling but decided to book a GP appointment anyway, to put her mind at ease. 

“We all know that any changes to our breasts are worth checking out,” said Helen, a Reader in Psychology at Â鶹´«Ã½ Leicester (Â鶹´«Ã½). “My GP examined my breasts and told me they could not feel any lumps either, only breast tissue, which was reassuring.”  

Despite no initial concerns, her GP decided to err on the side of caution and referred Helen to a specialist breast clinic for a mammogram. 

“I wasn’t really worried. I was pretty sure I couldn’t have breast cancer because there were no lumps.” 

However, the mammogram revealed a large tumour measuring 7cm. 

“I was diagnosed with lobular breast cancer, which I’d never even heard of,” continued Helen. “I was just really shocked that I had breast cancer because I had no lumps.” 

Helen was shocked to learn she had cancer, as she found no lumps in her breast

Lobular breast cancer accounts for around 15% of all breast cancers. It does not always form a firm lump as it grows in irregular patterns in the cells that line the lobules (the glands that make milk when breastfeeding) and spreads into the surrounding breast tissue.  

Possible symptoms for lobular breast cancer include an area of thickening or swelling in the breast tissue, a change in the nipple and/or a change in the skin, such as dimpling.   

Because lobular cancer does not always present in a lump, it is often detected late, with larger tumours, and more women need to have a mastectomy. It also doesn't respond well to treatments such as chemotherapy, as it tends to be slow growing, and has a tendency for late recurrence. 

Helen was told her tumour was grade three cancer because it was fast-growing – an unusual trait for lobular breast cancer. She underwent a mastectomy, following which she received chemotherapy, radiotherapy and hormone treatment. 

“Currently in the UK there is no specific guidance for treating lobular as a biologically different cancer,” she said.  

“Because lobular breast cancer tumours tend to be large and grow in net-like patterns that are spread out in the breast tissue, most women end up having a mastectomy rather than a lumpectomy.  

“I was offered chemotherapy because my cancer was unusually fast-growing but I’ve since learnt that most women with lobular breast cancer do not receive chemo because their tumours grow slowly."  

As an active researcher at Â鶹´«Ã½, Helen began digging deeper as she searched for more resources and information about lobular breast cancer, looking for research papers and scientific studies. She quickly realised there was a significant gap in the field, with very little data available. 

“Research often omits lobular patients, as their tumours are different, which has led to a knowledge gap and a lack of development of targeted therapies. The statistics are just not there,” she explained. 

“And this knowledge gap means that even though mammograms often miss this type of breast cancer because it can almost hide in the fibrous tissue, women are still offered mammograms for follow-up screening, even when their initial cancers were missed.” 

While undergoing treatment in 2020, Helen discovered a Facebook group dedicated to lobular patients, with thousands of members from all over the world. 

“We were all able to share our experiences and it was really interesting to hear how other people had been treated for their cancer, depending on where they live,” she said. 

Over time, a number of people in the support group – including Helen – came up with the idea of forming a new charity to provide information to people with a lobular diagnosis, as well as to collaborate with researchers and clinicians to advance knowledge of this type of cancer. 

The group, who met through Facebook, launched the charity earlier this year

“We all agreed that more needs to be done,” she said. “There is not enough information out there about lobular breast cancer. We want to raise awareness and develop resources that help other patients who have just been diagnosed or are going through treatment, to understand more about their cancer.” 

Combining their expertise – including Helen’s in the field of research – and shared passion to raise awareness, they launched the  charity. 

“I have helped develop the research part of the charity,” she said. “The limited research that is currently out there is very complicated and difficult for patients to understand. We want to conduct new, original studies that give lobular breast cancer patients a voice.” 

Helen, whose own research primarily focuses on the psychology of eating behaviours, will work alongside Â鶹´«Ã½’s Dr Kerry Quincey and Dr Iain Williamson, who are experts in the field of psycho-oncology research. 

There are already two collaborative projects underway between Â鶹´«Ã½ researchers and Lobular Breast Cancer UK, including a survey with lobular patients that asks what resources they feel are missing, and a qualitative study exploring the experiences of women whose lobular breast cancer was missed during screening. 

“The way we see it, is that we had to fight hard to find information and educate ourselves about lobular breast cancer, so we want to make it easier for those patients who are being diagnosed,” added Helen. 

“We want to learn from our experiences to change things for the better.”