Lobular breast cancer, also known as invasive lobular carcinoma, is the second most common type of breast cancer, yet it remains one of the least well-known, and least understood. This can leave patients and their loved ones feeling isolated and confused. In order to shine more of a light on this disease this Breast Cancer Awareness Month we spoke to Sharon about her experience from diagnosis to today - this is her story.
Conversations with friends who had experienced breast cancer gave me the confidence to trust my instincts and say, ‘Something isn’t right, and I need this checked.’
My lobular breast cancer diagnosis
In 2021, just seven months after a routine screening mammogram had given me the all-clear, my experience with invasive lobular breast cancer began. I had no lump, no dimpling, no dent, and none of the classic warning signs we are taught to look for.
My only symptom was a deep itch inside my breast and a strange tugging sensation. It had been there for about a month and, quite simply, it didn't feel right.
The feeling didn't go away, and I was concerned that something might have been missed. I was referred to my local breast clinic for further investigation and even there, my mammogram was clear. It wasn't until an ultrasound picked up a suspicious area that a biopsy was carried out and confirmed the diagnosis.
I often think about what might had happened if I had ignored that feeling and simply waited for my next routine mammogram.
Before my diagnosis, I had never even heard of lobular breast cancer. When I spoke to others, I quickly realised that none of them had heard of it either. I found that frightening, especially when I learned that lobular accounts for around 15% of breast cancers and is the second most common type of breast cancer.
My lobular breast cancer treatment
Initially, my treatment plan was to have a lumpectomy and go straight to radiotherapy, but post-surgery my tumour turned out to be much larger than the scans had suggested.
It was estimated to be 11 millimetres, but after surgery it measured 25.4 millimetres, and one of the three lymph nodes removed also tested positive, even though this had not shown up on the MRI.
I now understand that this is not unusual for lobular breast cancer and I'm not critical of my care at all - our medical teams are working with the best imaging tools that they have available.
Lobular breast cancer behaves and presents differently from other breast cancers. Instead of forming a firm lump, the cells tend to spread through the breast tissue in lines. That can make it harder to detect through physical examination and imaging such as mammograms and ultrasounds.
Why raising awareness for lobular breast cancer matters to me
Despite its distinct characteristics, lobular breast cancer is currently treated in much the same way as more common forms of invasive breast cancer, rather than through a pathway tailored to its particular biology.
I worry that people with lobular breast cancer aren't being given a fair chance. Everyone diagnosed with cancer deserves treatment informed by the biology of the particular cancer they have.
That's why discovery research, like the research funded by Worldwide Cancer Research, is so important - and why it gives me hope. By working together to understand the fundamentals of lobular breast cancer, scientists can combine their knowledge and find better ways to detect and treat it, and ultimately prevent lives from being cut short.
How can we make a difference to people with lobular breast cancer?
In the early 2000's Professor Cleton-Jansen and Professor Jonkers established that lobular breast cancer is a distinct disease from other types of breast cancer. This work, partly funded by Worldwide Cancer Research, laid the foundations for more specific lobular breast cancer treatments and further research breakthroughs.
Now, thanks to our Curestarters, Professor Darran O’Connor in Ireland has discovered a new drug combination that looks like it could be a powerful way to treat lobular breast cancer. The research is still in early stages, but kick-starting this idea has helped it get closer to a clinical trial.
Thanks to Curestarters like you, new ideas like this are being supported every year which could help patients around the world with any type of cancer.
The Worldwide Cancer Research grant was instrumental in looking for a new therapeutic option for lobular breast cancer patients. Before the grant we had no data to support a clinical trial in humans, now we do.
Join our united effort to stop cancer.
There are so many different ways to support our search for new cures. Will you join the 90,000+ Curestarters who are already helping us get closer to a day when no life is cut short by cancer?