Overlooked Lobular Breast Cancer Sparks Concern for Future Generations
Suzanne Harper considers herself fortunate to have identified an "overlooked" type of breast cancer that does not appear on mammograms.
After noticing "puckering" on her breast, Harper embarked on a decade-long battle with the disease, which she described as taking her to some "dark places." The 66-year-old said the experience has changed her perspective and raised concerns for her three daughters.
"It makes you assess things very differently," she said.
Harper is among 22 women affected by lobular breast cancer—the number diagnosed daily in the UK—who will hold silent vigils outside Westminster on Wednesday to call for government investment in "urgently needed" research.
Lobular breast cancer accounts for 15% of all breast cancer cases but is reportedly under-researched and often goes unrecognized because it rarely forms a lump like other breast cancers.
This cancer differs from more common types by originating in the milk-producing lobule glands, unlike the 70-80% of breast cancers that begin elsewhere.
Harper, from Tunbridge Wells, Kent, initially attributed bodily changes to stress, menopause, and caring for her children. However, during a chance self-examination, she noticed "puckering" on her breast.
The former carer had no lump, and the disease was not detected by mammograms; it may have been developing for years before diagnosis.
"I consider myself lucky it hadn't spread and because I had seen the puckering before, I recognised it," she said.
"That's the thing with this form of cancer - it is hard to detect. That is why it needs direct research."
"Deeply Frustrated" by Lack of Research
Tanya Hutson, 55, from Guildford, Surrey, was diagnosed in 2022—by chance.
A second tumour was only found after she insisted on a double mastectomy, a decision she described as "the best decision of my life."
Hutson emphasized the necessity of targeted research due to the disease’s tendency to evade scans, stating that thousands of women are being let down.
"You have all this treatment - I've had a mastectomy, chemotherapy and hormone blockers - but are they the right thing for lobular when there's no research into it?" she asked.
She described the side effects of her treatment as "pretty awful" and expressed shock upon learning that approximately 15% of breast cancer patients have lobular disease, yet no dedicated funding exists for its research.
Hutson was forced to give up her "dream job" and is still rebuilding her strength, calling the diagnosis something that "turns everything upside down."
"I want something positive to come out of this. I have friends who are now stage four as it wasn't picked up," she said. "We urgently need change."
Vigils and Campaign for Dedicated Funding
The vigils will be held simultaneously outside Downing Street, the Department of Health and Social Care (DHSC), and the Department for Science, Innovation and Technology starting at 10:30 BST. Schoolgirls will join the women to symbolize future generations.
The Lobular Moon Shot Project is urging ministers to commit £20 million over five years to research.
The DHSC stated that research funding is allocated through expert-led processes to support the best scientific projects.
The campaign was co-founded by Tristan Loraine from Horsham, West Sussex, whose wife, Dr. Susan Michaelis, passed away from lobular breast cancer last year.
"She would be devastated to see that little progress has been made," he said.
"We met Wes Streeting five days after Susan died and were told the Government supported this vital funding, yet thousands of women are still waiting.
"The current one-size-fits-all approach to treating lobular breast cancer is failing patients."
Government Response and National Cancer Plan
The government recently published its national cancer plan, which campaigners argue does not address the specific research needs of lobular breast cancer patients.
Campaigners report that their plan has the backing of 463 MPs but that no ring-fenced funding has been allocated.
A government spokesperson said:
"Lobular breast cancer goes undetected in too many women and we are determined to back research that could transform outcomes for patients.
Last week, Lord Vallance and Minister Hodgson - alongside government research funders - met with the Lobular Moon Shot Project to discuss how best to progress research in this vital area.
More broadly, our National Cancer Plan puts research at the heart of improving outcomes - helping to bring the latest scientific breakthroughs into the NHS faster so that patients benefit from earlier diagnosis, more effective treatments, and better quality of life."
Documentary and Contact Information
A documentary featuring women affected by lobular breast cancer will be broadcast on Together TV on Wednesday evening.
For further updates, follow BBC Surrey on Facebook and X. Story ideas can be sent to southeasttoday@bbc.co.uk or via WhatsApp at 08081 002250.
