Helen tells of shock at breast cancer diagnosis - despite not finding lumps
PROFESSOR NOW HELPING TO RAISE AWARENESS OF LITTLE KNOWN DISEASE WITH SUPPORT GROUP
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, above, 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.
Her GP had no initial concerns after an initial examination, providing a reassuring moment, the reader in psychology said.
Out of caution, the GP referred Helen to a specialist clinic for a mammogram, which revealed the unexpected. “I wasn’t really worried,” said Helen. “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.”
The lobular form accounts for about 15 per cent of all breast cancers, according to Cancer Research UK.
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.
Helen was told her tumour was grade-three cancer due to the fast rate it was growing – an unusual trait for the type.
The professor had a mastectomy before receiving 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 most women with lobular breast cancer do not receive chemo because tumours grow slowly.”
Helen decided to dig deeper to learn more about her type of cancer but found a significant gap in the field. “The statistics are just not there,” she said.
She found because tumours in lobular patients are different, they are often omitted from research, leading to a lack of development of targeted therapies.
Helen said: “This knowledge gap means that though mammograms often miss this type of breast cancer because it can almost hide in the fibrous tissue, women are still offered mammograms for followup 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 this type of cancer and collaborate with clinicians and researchers.
Together, with their expertise, including Helen’s in the field of research, the group launched Lobular Breast Cancer UK. “The way we see it, 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,” said Helen. “We want to learn from our experiences to change things for the better.”
Helen wants to “give patients a voice” by conducting new and original research alongside her peers.
The university is collaborating with the charity on two projects; 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.