In episode 7 of the DiepCJourney podcast we are discussing lobular breast cancer, also known as invasive lobular carcinoma (ILC), with Leigh Pate. Lobular breast cancer is the second most commonly diagnosed type of invasive breast cancer.
Often an understudied subtype of breast cancer I ask Leigh to join me on the podcast to help our followers understand more about it. Leigh founded the Lobular Breast Cancer Alliance (LBCA) in 2017 and continues to work as a research advocate in the breast cancer and ovarian/fallopian tube cancer community.
Leigh and I both have had lobular breast cancer. I have tucked my diagnosis, both of them, away in files and don’t pull them out to often. This is my way of coping with two diagnosis of breast cancer. Connecting with Leigh, precipitated my need to talk about this. Our goal is to explain lobular breast cancer to patients who have it and help them better understand this subtype of breast cancer to help in discussion with their healthcare team.
What is Lobular Breast Cancer?
Lobular breast cancer is a histological subtype of breast cancer, histological meaning how the cells are functioning vs. the molecular feature, for instance estrogen positive (ER-positive) breast cancer. A typical breast cancer forms a lump. Articles tell us to look and feel for lumps during monthly breast self-exams. With lobular breast cancer, the cells form by lining up in single file rather than clumping together. The reason they do not clump together over ninety-five percent of the time is because they are missing a protein called E-cadherin which is a protein that basically acts like cellular glue. E-cadherin is what makes cancers cells clump together. If you do not have that protein the cells spread out more like tendrils. They can actually also form by forming thickenings and layers rather than masses or hard lumps.
Lobular breast cancer forms differently in your breast. It can form a thickening, distort the size and shape of your breast making it harder to detect. You might see a dent, inverted nipple, all dependent on how the cells form and spread out.
How is Lobular Breast Cancer Diagnosed?
Leigh points out it is not unusual for women to be diagnosed with extremely large tumors with absolutely no symptoms. This is problematic in diagnosing lobular breast cancer. Mammograms are meant to find masses and lumps. A radiologist may see a distortion or changes on the imaging, a probability of lobular breast cancer. So yes, mammograms are beneficial in this way. However, it is more difficult to find than a breast cancer that forms a lump. This is a factor that can contribute to a late-stage diagnosis.
We discuss radiology and if radiologists are more accurately trained in detecting hard to see breast cancers like lobular breast cancer. Leigh states she does not know what the criterion for curriculum training but fully expects the technology and access to better technology is improving. Leigh shares that a patient with lobular can benefit from having a second opinion of their screening at an NCI, National Cancer Institute, designated cancer center. Think of it in terms of volumes of cases seen. At larger centers they have done more imaging so they see far more cases than in a smaller medical center.
Where Lobular Breast Cancer Presents in the Breast
The tumors can show up anywhere in the breast. They do tend to spread out more in tendrils. There is some evidence that lobular breast cancer is more likely to be bilateral than other tumors. Another characteristic about lobular that is different is it tends to spread to different locations. Whereas ductal tumors spread to the bone, lung, liver, and brain, lobular goes to the bones too. But lobular has a predilection to spread to the abdomen, pelvis, ovaries, and GI tract. These are places not typical to find breast cancer.
I point out when you are a patient who is newly diagnosed ask your healthcare team, whether it is a surgeon or oncologist to show you a visual photo of the breast. This can differentiate the milk ducts from the lobules in the breast to help you understand the formation of the tumor . The lobules are shaped differently than the breast duct, where 80% of all breast cancer present. These illustrations can help you see how the lobular breast cancer can infiltrate. Leigh says determining the cell of origin of LBC is still one of those unanswered questions.
Who is More Likely to Get Lobular Breast Cancer?
We discuss risk factors. Men get breast cancer, too, but in lobular breast cancer it tends to be more heavily of women. People with lobular breast cancer tend to be older than those with ductal breast cancer. Lobular breast cancer tends to be diagnosed more in white women. There is research that links LBC to hormone replacement therapy. Lobular breast cancer tends to be ER+ and very strongly estrogen driven, thus thoughts that tend to point to things that produce estrogen maybe lead more to lobular.
There is thought that obesity, may have a stronger link since fat cells can produce more estrogen. Another link is to alcohol consumption which also presents with producing estrogenic factors. Genetic risk factors can be the presence of the CDH1 mutation linked to gastric cancer and lobular breast cancer. Leigh points out there has been little research done in LBC. Growing interest and concern have changed that in the past five years. This led to exploring which treatment options are better and needing refinement. Treatment and diagnosis of lobular breast cancer is behind and there is catching up to do. Until very recently treatment done for LBC has been the same as for ductal cancer. There are still a lot of unknowns.
The Value of Patient Advocacy
Leigh shares the reason she advocates in the breast cancer community. She shares that she was pretty shocked at being diagnosed. Leigh went through the thoughts many patients go through thinking what did I do and what happened that I got breast cancer. Then she started researching finding out breast cancer came in types and subtypes, which she didn’t know before her diagnosis. As she learned more and found out how little there was to help patients understand their disease, after her own treatment, Leigh wanted to learn and help other patients.
She became involved in local committees at the Fred Hutch Cancer Research Center as an advocate. Like me, Leigh completed the program by the National Breast Cancer Coalition, project LEAD, an excellent baseline in the science and biology of breast cancer for advocates. There she met another advocate who told her about an upcoming conference in Pittsburg, specifically on LBC.
It was first ever symposium focusing specifically on lobular breast cancer. Researchers were brought in from all over the world long with thirty advocates in attendance. Out of that symposium the formalized work and organization, Lobular Breast Cancer Alliance was formed. The goals of the LBCA are to get information out to patients to discuss with providers how to discuss LBC to drive their treatment options.
An Important Reminder in Breast Cancer
We encourage monthly self-exams. Leigh and I both had LBC and through self-exams were able to find our breast cancer. We speak about having imaging results interpreted at NCI-Designated Centers. LBC is often a breast cancer that is difficult to detect from breast cancer imaging. The more images that are seen by radiologist, the more likely it is their experiences seeing this type of breast cancer will make them more familiar to the eye and increase the likelihood and their ability to detect it by looking at a high volume of images.
As two folks from Seattle wrap up the conversation, Leigh and I have plans to some day meet at our favorite coffee shop. Enjoy the full episode here on Spotify.