Lobular breast cancer, also known as invasive lobular carcinoma, is the second most common type of breast cancer worldwide. But, because it behaves differently to other breast cancers, it needs different cures. Here we unpick some of the challenges of lobular breast cancer and how research to understand more about the disease and how to better prevent, diagnose, and treat it is giving hope to patients around the world.
Ask an oncologist
Dr Caroline Michie is a consultant medical oncologist with years of experience treating breast cancer patients. She feels strongly that we need more lobular breast cancer research in order to do better for patients. Watch the video to hear from her directly.
How is lobular breast cancer different to other types of breast cancer?
There are many different types of breast cancers and they all need different approaches to prevention, diagnosis and treatment. The most common type of breast cancer, ductal breast cancer, begins in the lining of the milk ducts.
Lobular breast cancer gets its name because it instead develops in tiny milk-producing glands at the end of the ducts called lobules. Around 1 in 7 breast cancer patients have lobular breast cancer. Sometimes it is referred to as invasive lobular carcinoma or ILC for short.
Lobular breast cancer grows in a line or as single cells, rarely forming a lump in the way that other breast cancers do. This makes it harder to show up on scans. It also spreads differently, to different parts of the body.
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.
Why is lobular breast cancer harder to detect?
A lot of breast cancers grow in a lump which may be noticed by the patient or seen on a scan. Lobular breast cancer is different. It grows in thin lines or individual cells. This makes lobular breast cancer harder to show up on scans.
Who is more likely to develop lobular breast cancer?
Risk factors for lobular breast cancer are similar to other types of the disease. We don’t yet fully understand what causes lobular breast cancer but these factors can play a role:
Gender: Anyone can develop breast cancer, but it is more common in women and when breast cancer develops in men it is more likely to be ductal breast cancer.
Age: Lobular breast cancer most commonly happens in older women, particularly after menopause.
Lifestyle: Drinking alcohol increases your risk of breast cancer and other cancers. Having obesity also increases your risk.
Family history: Having a relative with breast cancer does not mean you will get it too, but some genetic mutations that can put you at a higher risk are able to be passed down through families.
LCIS: Lobular carcinoma in situ (LCIS) is not a type of cancer itself but having this condition puts you at a higher risk of developing lobular breast cancer.
Hormone exposure: The hormone oestrogen is a risk factor for some breast cancers including lobular breast cancer. So the age of your first period, age of menopause, age of childbirth or if you are taking hormone replacement therapy may all impact your risk of lobular breast cancer.
For a lot of patients though, cancer-causing mutations can happen randomly in your breast cells. More research is needed to understand what kickstarts this life-threatening process and how we can stop lobular breast cancer in its tracks.
Where does lobular breast cancer spread to?
When any cancer spreads to other parts of the body, it becomes harder to treat. In lobular breast cancer, this problem can be even more challenging because it tends to spread to more unusual locations and it is harder to see it spreading.
Ductal breast cancer most commonly spreads to the bones, lungs, liver and brain. Lobular breast cancer though tends to spread to the ovaries, bones, the intestines, or tissue around the kidneys or uterus. This distinction makes it harder to spot the cancer spreading.
Discovery research to better understand how lobular cancer spreads and why it spreads to these other parts of the body is key to helping patients live better, for longer.
Symptoms, diagnosis and treatment of lobular breast cancer:
Symptoms of lobular breast cancer
Unlike other breast cancers, lobular breast cancer does not tend to cause a lump. Instead symptoms of lobular breast cancer can include:
A tugging or swelling feeling in your breast
Constant or stabbing pain
Change in the breast appearance, such as puckering or dimpling
Itch on or inside your breast
Changes to your nipple including inverting or oozing discharge
A lump or swelling under your arm
If you are worried at all about any symptoms please speak to your doctor.
How is lobular breast cancer diagnosed?
Spotting lobular breast cancer can be harder than some other breast cancers. You may need a combination of tests to discover the cancer and what stage it is at, including:
Mammogram - an x-ray of the breast tissue.
Ultrasound - scan that uses sound waves to visualise the breast area.
Biopsy - taking a sample of your breast tissue to examine under a microscope and to undergo testing.
Fine needle aspiration (FNA) - taking a sample of cells using a fine needle and syringe, so that they can be examined under a microscope.
MRI scan - a way to get a more detailed picture of the breast area.
How is lobular breast cancer treated?
If you or a loved one has been diagnosed with lobular breast cancer, your treatment plan will be developed by your oncology team for your specific cancer. Not everyone has the same treatments, or in the same order since everyone’s cancer is different.
Treatment for lobular breast cancer can include:
Surgery. A lumpectomy (also called breast-conserving surgery) involves removing the cancer and a margin of regular breast tissue. A mastectomy is surgery to remove all of the breast tissue. The type of surgery you need will depend on the stage of your cancer, where in the breast it is located and the size of it.
Chemotherapy. This involves taking strong medicine designed to destroy cancer cells. Although chemotherapy is not as effective for lobular breast cancer as it can be for other breast cancers, it can still be useful for some patients, particularly if it has spread to the lymph nodes or is more aggressive.
Radiotherapy. This form of treatment uses special radiation to target cancer cells. It is sometimes used after surgery to kill any remaining cancer cells.
Hormone therapy. A lot of lobular breast cancers grow with the help of the hormone oestrogen. This means that they can often respond well to a type of treatment called oestrogen blockers.
Targeted therapies. These work by killing cancer cells, while sparing healthy cells, and are becoming a reality for some cancer patients thanks to international cancer research about the differences between cancer cells and their healthy neighbours. Herceptin is an example of a targeted therapy that can sometimes be used for lobular breast cancers if you are positive for the HER2 protein. More research is needed to identify potential new targeted treatments for lobular breast cancer.
Is lobular breast cancer curable?
The sooner lobular breast cancer is detected, the easier it is to cure, and for many patients it can be treated effectively. However, it can sometimes be more challenging to diagnose than other types of breast cancer and it doesn't always respond as well to treatment.
Because it can sometimes be harder to spot than other types of breast cancer, lobular breast cancer is often diagnosed at a more advanced stage, which makes it hard to treat. Another challenge facing lobular breast cancer patients is the fear of the cancer returning, as lobular breast cancer can recur as much as ten or more years later.
If you have been diagnosed with lobular breast cancer, your oncology team will be able to best advise about your personal prognosis.
But the more we can understand about lobular breast cancer and the unique way it grows, the easier it is to find new cures.
Why is lobular breast cancer research important?
In the past different breast cancers would have all been treated the same way, but thanks to international cancer research we now understand this isn’t the best approach for patients.
Lobular breast cancer has its own unique challenges. By understanding more about what causes lobular breast cancer, how it grows and why it spreads, we can begin to find solutions to these problems.
In 2016 lobular breast cancer was declared as ‘understudied’, meaning that more research is urgently needed to help the thousands of people affected by it worldwide. Discovery research is the first step towards new ways to prevent, diagnose and treat lobular breast cancer.
Sharon's lobular breast cancer story
My experience with invasive lobular breast cancer began just seven months after a routine screening mammogram had given me the all-clear. 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.
I often think about what might have happened if I had ignored that feeling and simply waited for my next routine mammogram.
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 by the disease.
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.
Your FAQs about lobular breast cancer
Can lobular breast cancer be seen on a mammogram?
One challenge of lobular breast cancer is that it is harder to show up in scans than other cancers. To diagnose lobular breast cancer a combination of different scans may be used to help detect it.
Is lobular breast cancer hereditary?
Most cases of lobular breast cancer are not hereditary. The cancer starts because of mutations in your DNA and most of the time these mutations happen due to random chance or other risk factors. Occasionally mutations in genes including BRCA1 and BRCA2 can be passed on through families, increasing your risk of developing lobular breast cancer.
Can men get lobular breast cancer?
Anyone with breasts can develop breast cancer, including men. However, in most cases men tend to develop a different type of breast cancer called ductal breast cancer rather than lobular breast cancer.
Does lobular breast cancer come back?
Unfortunately lobular breast cancer can come back. Unlike other breast cancers which tend to come back within a few years if they do recur, lobular breast cancer can go quiet for over a decade before re-appearing. Discovery research to help us better understanding why lobular breast cancer behaves like this is vital to help patients live without this fear
What research is being done into lobular breast cancer cures?
Curestarters are helping find new cures for lobular breast cancer. Professor O’Connor and his team in Ireland have been testing new targeted drugs to overcome treatment resistance in invasive lobular breast cancer. Excitingly, they have discovered a potential treatment combination they hope to take to clinical trials in the future.
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