[ Anglais] Breast Cancer Patient Advocate Perspective From ASCO 2019

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Topics include: Emerging Research

What is lobular breast cancer? How does it develop differently? On-site in Chicago at the 2019 American Society of Clinical Oncology (ASCO) conference, patient advocate Diane Mapes shares her story being diagnosed with a type of breast cancer with no lumps and can remain unseen on mammograms. Diane also discusses the “news we can use” as breast cancer patients from research presented at ASCO. Tune in to find out more. 

For more on lobular breast cancer, visit the Lobular Breast Cancer Alliance (LBCA) at www.lobularbreastcancer.org

Connect with Diane on Twitter @double_whammied   

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Transcript

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 here with a good friend of mine, Diane Mapes who is a lobular breast cancer survivor.  Diane, can you share with us just a little bit about your diagnosis? 

Diane Mapes:

Sure.  I'd never heard of lobular.  I was diagnosed with no lump, and I had tumors in both breasts. The mammogram that I had the very day that I got the news that I had two lumps in each breast, mammogram was clean, but the ultrasound found these tumors.  So it was news to me that there was a breast cancer that didn't make a lump, but there is.  No?lump lobular.  

And it was news to me that lobular is not seen on mammograms, and that was big, bad news. So I was diagnosed at stage III. Lobular is often diagnosed late, because it's hard to see on a mammogram, because people don't know that it doesn't necessarily make a lump, so it's good to raise awareness about these things.  

Rebecca Seago-Coyle:

Great.  And I know you're a huge patient advocate these days…

Diane Mapes:

I try.  

Rebecca Seago-Coyle:

…for lobular breast cancer.  So you want to talk a little bit about the LBCA?  

Diane Mapes:

Yeah.  LBCA is the Lobular Breast Cancer Alliance, and it was founded by a group of lobular patients, Lee Pate of Seattle, a lobular breast cancer patient, she probably had the original idea and then got a lot of us together along with lobular researchers and radiologists and oncologists, people who are in this arena, and put together the alliance.  I call the members lob mob, hashtag lob mob.  

And so it's a nice patient?grown group to help encourage research, to help raise awareness because a lot of patients don't understand that there's a big difference between the two types of breast cancer, and even oncologists don't often recognize what the differences are, and they will treat it exactly like ductal, which oftentimes is fine, but there are major differences with lobular from ductal, one of them being lobular doesn't make a lump, doesn't show up on mammograms.  It metastasizes in different places.  

Rebecca Seago-Coyle:

Right.  

Diane Mapes:

That's news that we can use as patients.  

Rebecca Seago-Coyle:

So a conference such as ASCO, it's really huge for people to come here, oncologists, researchers, even patients.  

Diane Mapes:

40,000 oncology professionals and patients here.  

Rebecca Seago-Coyle:

Yes, and so if they're here they're learning about new things coming out.  Now we're starting to focus on or learn more about lobular breast cancer.  So do you know of any of the new things coming out this year at ASCO?  

Diane Mapes:

Yeah.  I was just at a poster presentation with Dr. Otto Metzger of Dana?Farber working with another researcher, Dr. Hee Jeong Kim, and she is the senior author on the paper.  But it breaks down, it follows a group of lobular patients and ductal patients, and they used medical records from the SEER Cancer Registry that—all the patients in the US are represented in that, and so they were able to follow these patients.  

They had 10,000 lobular patients, and then they had an equal amount of ductal patients, and they were able to see significant differences in survival, so—even on the same treatment that ductal patients are getting, lobular patients are not doing as well.  So it points out key differences between the two different types of cancer and points out that maybe there's a need for a better type of endocrine therapy or antihormone therapy.  

Rebecca Seago-Coyle:

Wow. That's really interesting.  

Diane Mapes:

It was a study for premenopausal, I should mention too.  It was for patients who were diagnosed premenopausally. Yeah.  But once you go into chemo and once you get on a tamoxifen (Soltamox) or an AI you're menopausal.  

Rebecca Seago-Coyle:

It's really interesting, especially with the theme of this year, caring for every patient, learning from every patient.  I feel like based on some of the research that's been done with lobular we're learning from patients and we're starting to be able to look at different types of breast cancer so that we can care for them and provide them the right treatments and therapies.  

Diane Mapes:

It's so important to tease out these differences and these little nuances between the cancers and make sure that every patient gets the absolute best treatment and the best care.  Yeah, and ASCO has been wonderful this year.  My first time.  

Rebecca Seago-Coyle:

My first time, too.  And we're both breast cancer survivors, so it's great.  So, Diane, how did you connect with other lobular breast cancer patients?  

Diane Mapes:

Mainly through Twitter.  I started a Twitter account shortly after I was diagnosed.  It was an anonymous account.  I called double whammy because dense breasts and lobular breast cancer, double whammy.  So I was able to connect with patients and researchers all over the country, all over the world.  Now there's LBCA groups starting in Ireland and in the UK.  The researcher who presented that paper, Dr. Kim, she's talking about starting a Lobular Breast Cancer Alliance group in Korea. So we're going international.  

Rebecca Seago-Coyle:

Thank you so much for joining us.  As Patient Power always says, knowledge can be the best medicine.  

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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Page last updated on July 5, 2019