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Lobular Breast Cancer Diagnosis Leads to Patient Advocacy

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Published on March 28, 2020

Key Takeaways

“We’re never going to refine therapies and understand how to treat lobular breast cancer better if we don’t run those clinical trials and test those therapies,” says Leigh Pate, a patient advocate and Director of the Lobular Breast Cancer Alliance (LBCA). When Leigh was diagnosed with lobular breast cancer in 2011, she had no idea that in just a few years she would be founding a national organization with a small group of fellow advocates.

Watch now as Leigh discusses her diagnosis and treatment, explains why patient advocacy and clinical trials are so important, and shares the incredible work being done by the LBCA.

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Transcript | Lobular Breast Cancer Diagnosis Leads to Patient Advocacy

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Rebecca Seago-Coyle:

Hey everyone. I'm Rebecca Seago-Coyle, the Editorial and Community Director for Patient Power. I'm here with a really good friend of mine, Leigh Pate, who is a breast cancer patient advocate. Hey, Leigh, how's it going?

Leigh Pate:

Good. How are you Rebecca?

Rebecca Seago-Coyle:

Good. Thanks for joining us on this Monday morning. So why don't you tell us a little bit about yourself?

Leigh Pate:

Well, I live here in Seattle and was diagnosed with lobular breast cancer in the Fall of 2011 and was in treatment for that through 2012. And one of the things that I realized quickly, because I'm one of those researcher types who likes to understand everything there is to know and try to make good informed decisions was, there was very little information out there about lobular breast cancer, which is actually the second most common cellular subtype of breast cancer.

Rebecca Seago-Coyle:

Yeah. Sorry. That's interesting. I was just going to ask you like what is the difference between lobular breast cancer and maybe DCIS? I know we hear a lot about DCIS and invasive ductal carcinoma, but what's the difference between that and lobular breast cancer?

Leigh Pate:

Well, so lobular breast cancer is a distinct subtype of breast cancer and it has to do with the cellular, how the cells look, so as a histological subtype of breast cancer. Basically, most breast cancers form a lump, so when we do self-exams or they look for breast cancer on mammograms, for example, they're looking for a lump typically. But lobular breast cancer is missing a protein called e-cadherin, which acts like glue in the cells. And so instead of forming a lump, a lobular breast cancer cells tend to form sheets or strands or kind of go out in single-file cells. So that makes this disease harder to find on mammograms and very hard to find on physical exams. So for example, sometimes you can get a feel a lump, but often it's a thickening or a dimple. And what this does is it results in lobular breast cancer and being diagnosed in a lot later stages than ductal breast cancers.

Rebecca Seago-Coyle:

So, Leigh, if that's the case, how did they diagnose your lobular breast cancer?

Leigh Pate:

Well, I actually was going in for my regular annual mammogram like I was supposed to every year. I was 44 at the time, and I did a self-exam the week before, and I felt a lump. I went into my regular screening mammogram and said, "Oh by the way, I felt a lump. Can you make sure to get this spot?" Which by the way, I learned is apparently the wrong way to do it. But anyway, long-story short is basically they diagnosed the breast cancer. But when they did the surgery, what they found is that lump that I felt was actually DCIS, it was noninvasive ductal breast cancer, but immediately next to it was the lobular breast cancer.

So, it was diagnosed at stage IIB and I would've never even known that that invasive lobular cancer was in there had there not happened to have been another tumor immediately next to it that was not invasive that I felt. So in many ways I was fairly lucky, because that could have gotten very, very big, and many women who are diagnosed with this disease are diagnosed at stage III or even de novo, where they're already metastatic, and it spread outside the breast.

Rebecca Seago-Coyle:

Yeah. So I know that you have a big background of being an activist and that sort of thing. So I'm not surprised that this might have launched you into a lot of your patient advocacy. Do you want to tell us a little bit about what you've done since you've been diagnosed with breast cancer?

Leigh Pate:

Well, so I think once you get through your breast cancer—and sometimes it takes a little while to decide what the right thing is to do—it's kind of a living and moving forward after cancer diagnosis is challenging. But one of the things that I decided to do is to get more involved in breast cancer as a patient advocate. So I went and participated in some trainings and tried to upgrade my 9th grade biology class, which was about my science background at the point.

Rebecca Seago-Coyle:

I think that's where you and I really connected.

Leigh Pate:

That's right. Where we connected was in the trying to relearn science as part of the patient advocacy training. But then there was something super exciting though was the very first annual International Symposium on Lobular Breast Cancer. It was held in Pittsburgh, Pennsylvania in September of 2016, and I and about 30 patient advocates with lobular breast cancer came in from all over the country to participate in this. And out of that we had a little advocates meeting at that, and we were like, "Gosh, we need to do something, this is a distinct disease, there's no information out there about it. It's treated exactly the same as other breast cancers. Even though we know for research that some of the treatments may be different, that it might respond differently to therapies, its clearly got differences during where common techniques and screening like don't apply as well. And we really need to do some things to better understand this disease and to do some clinical trials to refine therapies."

So, we all got together and out of that we initially thought, "Well, we want to send a letter, and we want to just tell everybody the patients really think is important to do this." And out of that, we've actually grown this organization that we now have subscribers all over the country in the world on our website. We try to go to conferences and meetings and form partnerships with different breast cancer organizations, and we're working to try to really raise the profile of lobular breast cancer. We also have a fantastic scientific advisory board, many of whom were participating in that initial conference in 2016, and they lend tremendous scientific expertise to our efforts.

Rebecca Seago-Coyle:

Yeah, I mean I think this is a really amazing, so the organization that you have created with these other patient advocates and scientific advisory folks is the Lobular Breast Cancer Alliance. So you want to tell us a little bit about what's on your site and where people can go to find that information?

Leigh Pate:

Well, our website address is lobularbreastcancer.org and if you go to that website, we've been working on basically trying to put together just some basic information about what lobular breast cancer is. So you're going to find a resource library on there, and it's going to include things like a fact sheet on lobular breast cancer and how it's different—some frequently asked questions. That's all been vetted by our scientific advisory committee—some basic infographics about how to recognize lobular breast cancer if it occurs in your breast and where lobular breast cancer can metastasize, because it actually spreads to different places. So, we have the locations where a lobular can spread and the signs to look for if you're a patient has been previously diagnosed from as metathesis. We link and partner with other organizations to do webinars and do educational presentations.

We also have a whole section on our website about how to become a patient advocate. It's incredibly important for patients to get involved, not only to advocate for their own care, but to work with their institutions and researchers to advocate for more research and ask for more research and for lobular breast cancer to be included in current research. Right now, it's often overlooked in research studies. Their sub-samples are so small that you can't learn anything about lobular as being different, because there are too few patients enrolled in studies. And right now in the United States, there are only two clinical trials for lobular breast cancer—two. And both of those are pre-surgical trials. There are two trials in Europe for metastatic cancer, and so there's a real desperate need to really understand, we're never going to refine therapies and understand how to treat lobular breast cancer better if we don't run these clinical trials and test those therapies.

Rebecca Seago-Coyle:

That's interesting you brought that up, because I was going to ask you if you participated in a clinical trial. I feel like that's a really hot topic these days in the patient community. But if there are only two and it's pre-surgical, that makes it a little hard for people to participate sometimes.

Leigh Pate:

Right. Now, lobular breast cancers tend to be strongly estrogen receptor-positive, and right now they're often just treated like any estrogen-positive breast cancer. So there are lobular patients who can get into more general trials that fit their profile, but there are only two that are very specifically trying to study and learn about lobular breast cancer. And one of the things that I should say about like lobular breast cancer is not a rare disease. Alone, there are almost 40,000 women each year just in the U.S. that are diagnosed with lobular breast cancer. And alone, we are the number six cancer of women. That's more than many, many other types of cancers, including leukemias, brain cancers. There are more of us just as a subtype of this breast cancer than many other cancers that are getting a lot of research and attention.

Rebecca Seago-Coyle:

That's pretty amazing and incredible. I mean, I get what you're saying, it's not a rare cancer, but people are thinking that it is. So I love what you're doing on your website. I actually shared it to another patient that reached out to me who had said that she had been diagnosed with lobular, and I sent it to her and she was like, "Oh my gosh, this is so amazing to have all this information in one spot." So I know you guys are doing some great work there. Is there anything else you'd like to share with us and our breast cancer community?

Leigh Pate:

Well, I would just say that if you are a patient advocate and you're listening, we hope you'll come check us out, because we need voices who are working with researchers and institutions all over the country in the world to be talking about lobular breast cancer and why it's different and why we need more research into this, into this disease.

Rebecca Seago-Coyle:

Yeah. Well, Leigh, thank you so much for your time today. Thanks for sharing your story and all the work that you're doing at the Lobular Breast Cancer Alliance. I think you're living proof of, I always say patient power, which is knowledge can be the best medicine.

Leigh Pate:

Thank you.

Rebecca Seago-Coyle:

All right, thanks. Bye.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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