Leigh Pate was diagnosed with early-stage lobular breast cancer in 2011. A fortuitous finding in her breast led to her eventual diagnosis, but through the process she learned quickly how to advocate hard for herself to get the answers she needed.
Leigh was recently named a Komen Scholar – an advisory group of distinguished leaders in breast cancer research, clinical practice, public health, advocacy and other relevant fields, who provide expertise and guidance to Susan G. Komen on research and other mission programs.
Leigh recently spoke with Susan G. Komen and shared her personal experience with lobular breast cancer, which accounts for between 10-15 percent of breast cancer cases in the U.S.
Q: What is lobular breast cancer and what makes it different from a traditional lump?
A: Lobular breast cancer is a subtype of breast cancer that has a different biology and behaves differently that the most common type of breast cancer. It almost always lacks a protein called e-cadherin, which acts like cellular glue, so it usually doesn’t form a lump and it’s frequently not detected on screening mammograms or clinical exams. Sometimes lobular breast cancer can be detected by noticing any change in the breast – the shape and size of the breast. The cancer usually spreads out into broad sheets or tendrils. The thing with lobular is, it can be there as extremely large tumors without any noticeable changes in the breast and it is more frequently diagnosed at a late stage when it’s harder to treat. It also behaves differently than typical breast cancer and can spread to unusual places in the body such as the ovaries, stomach and abdominal organs.
We hear the stories all the time of women who’ve had their screening mammograms just months prior that were clear, years of clear mammograms, and they’re diagnosed with these massive 9-, 10-centimeter tumors. Screening mammograms are designed to find lumps and other irregularities in the breast, but since lobular breast tumors don’t always appear as a mass on a mammogram, they can be harder to detect.
Q: So how was your breast cancer detected?
A: I was going in for my regular screening and felt a lump in my breast just prior to the appointment. At the screening, I said, “Hey, make sure you look at this spot.” The lump I felt was a ductal mass, but the mammogram didn’t show anything. Then I had a diagnostic mammogram that also didn’t show anything. Finally, I had an ultrasound and they found the area of concern.
I had a biopsy and the mass ended up being ductal carcinoma in situ (DCIS), but they also found a much larger tumor immediately adjacent to the DCIS that was invasive lobular carcinoma. Had I not found this DCIS tumor that formed a palpable lump, the lobular cancer would have kept growing and there would have been no obvious symptoms until the tumor was much bigger.
Q: What were some of the challenges you faced in being diagnosed with lobular breast cancer?
A: For many patients, including me, the confidence in their care is undermined when you have lobular breast cancer and it’s never mentioned or acknowledged. Lobular is treated the same as ductal carcinoma, but it’s different.
Lobular breast cancer is the second most common type of breast cancer behind invasive ductal carcinoma, but until recently there was very little information out there about it. There might be a little paragraph about it on the bottom of a website.
Q: How has the attention to lobular breast cancer changed over the past years?
A: There has been more interest in the research community internationally to study lobular and progress made in better understanding the disease, its differences, and its unusual behaviors. And we are just beginning to see this understanding being translated into clinical trials to identify targeted therapies, and importantly to refine current standards of care for patients. Right now, patients with lobular are treated the same as those with more common ductal cancers. For example, researchers understand now that diagnosing lobular breast cancer is very inconsistent because we don’t have consistent standards. So, there’s a move to standardize the diagnosis and that would be the building block to more research to better understand the disease and how to treat it.
Q: You’ve been a strong advocate for the lobular breast cancer community, starting the Lobular Breast Cancer Alliance, and helping to get more researchers focused on lobular breast cancer. What do you hope to accomplish during your time as a Komen Scholar?
A: I appreciate being invited and I appreciate the early leadership role that Komen gave by providing this very first educational opportunity on lobular breast cancer through the Northwest Metastatic Breast Cancer Conference in 2017. That meant a lot to a lot of people with lobular breast cancer.
I’d like to work with the team at Komen to integrate lobular breast cancer more visibly and meaningfully in education, in research grants, and in a lot of the programs that Komen offers. I want to make sure that lobular patients are included in these things, that the differences are addressed and pursued within research. And I would like lobular breast cancer to be more meaningfully integrated within the structure and the programs of this important breast cancer organization. I think that organizations like Komen have the ability to change the landscape for patients with lobular breast cancer.
Read more about Leigh’s ideas for increasing awareness and advancing research of lobular breast cancer.
Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.
