De Montfort University professor's shock breast cancer diagnosis despite not finding lumps

A De Montfort University professor was shocked to be diagnosed with a type of breast cancer she had never heard of despite doctors not finding any lumps.

After noticing one of her breasts was bulging in an unusual way, Dr Helen Coulthard quickly began searching for lumps.

She was relieved to find no swelling or lumps but decided to book a GP appointment to put her mind at ease.

Out of caution the GP referred Helen to a specialist clinic for a mammogram, which revealed the unexpected.

"I wasn't really worried." Helen said. "I was pretty sure I couldn't have cancer because there were no lumps."

But the mammogram revealed a tumour measuring seven centimetres.

"I was diagnosed with lobular breast cancer which I'd never even heard of," she said.

"I was just really shocked that I had breast cancer."

Lobular breast cancer accounts for around 15 per cent of all breast cancers, according to Cancer Research UK.

But unlike other types, lobular breast cancer does not always form a firm lump which means it is often detected late and with larger tumours like Helen's.

Instead, the symptoms can include an area of swelling or thickening, a change in the nipple and a change in the skin.

The professor underwent a mastectomy before receiving chemotherapy, radiotherapy and hormone treatment.

As a researcher at DMU, Helen decided to dig deeper to learn more about the type of cancer she had but found a significant gap in the field.

"The statistics are just not there," she said.

She found that because tumours in lobular patients are different, they are often omitted from research, leading to a lack of development of targeted therapies.

Helen added: "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 found a support group on Facebook where thousands of lobular patients from around the world shared their experiences.

"We all agreed that more needs to be done," she said. "There is not enough information out there about lobular breast cancer."

Alongside some of her fellow group members, Helen thought up a new charity to raise awareness of the type of cancer and collaborate with clinicians and researchers.

Together with their joint expertise, including Helen's in the field of research, the group launched Lobular Breast Cancer UK.

"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."

While the limited amount of research available is "difficult to understand", Helen wants to "give patients a voice" by conducting new and original research alongside her peers.

DMU is already collaborating with the charity on two projects including a survey asking lobular patients what resources they feel are missing and a study exploring the experience of women whose cancer was missed during screening.