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Sunday Is Metastatic Breast Cancer Awareness Day


It's breast cancer awareness month, and today is metastatic breast cancer awareness day. And in honor of Cokie Roberts, who had breast cancer and died last month, we're going to talk about metastatic breast cancer with a woman who has it.

Julia Maues was diagnosed with breast cancer in 2013 while she was pregnant with her son. After his birth, she learned it was metastatic. It had spread beyond her breast to her brain, liver and bones. She's still here and at the age of 35 living and working to spread awareness about this deadly disease. She joins me now along with Dr. Filipa Lynce, a medical oncologist who works closely with metastatic breast cancer patients here in D.C.

Thank you both for being with us.

JULIA MAUES: Thank you, Lulu.

FILIPA LYNCE: Thank you.

GARCIA-NAVARRO: Dr. Lynce, I'm going to start with you. What is metastatic breast cancer for those who may not know?

LYNCE: So metastatic breast cancer is breast cancer that has spread to outside the breast and the lymph nodes. So it's still breast cancer. It's not now liver cancer or brain or bone cancer, but it has just spread outside the breast. And the lymph nodes under the armpit...

GARCIA-NAVARRO: Metastasized, hence metastatic.

LYNCE: Exactly. Has metastasized, which is associated with what we call stage 4 or metastatic breast cancer.

GARCIA-NAVARRO: Julia, as we mentioned, you were diagnosed in 2013. Can you tell me a little bit about that? How did that come about?

MAUES: Yeah, so I had a lump in my breast. I brought it up with my doctor. And she right away requested an ultrasound, which became a biopsy, which became - well, we found out the next day that the pathology showed breast cancer. So I was pregnant at the time, so to my surprise, they do give chemotherapy to pregnant women with cancer. And I did receive that, couldn't do tests that looked at the rest of my body.

But after I delivered my son, who was healthy and full of hair, even though I had no hair, I found out that I had cancer in other parts of my body. So it had spread beyond the breast. It was in my liver, in my brain, in my bones. And I was most likely going to die from that. And I'm going to have to be in intensive treatment for the rest of my life.

GARCIA-NAVARRO: What has life been like since you were diagnosed?

MAUES: I have lived different stages, I believe. In the beginning, it was really a shock, and I feel like it's a blur. I did have very poor health in the beginning and was not doing well with the drugs, had heart problems. The brain mets are very complicated, as the drugs don't get into the brain.

GARCIA-NAVARRO: While caring for a newborn.

MAUES: And I had a newborn. And I had a very hard time connecting with him in the beginning. I didn't think he was going to have a mother around, so I didn't want him to be too attached to me. But against all odds, eventually, I did start responding to therapy. So I have lived way longer than I thought I would live. And I feel like this is bonus time. And I also believe that I need to go back to this community and make people aware that breast cancer is not a curable illness. It's not a pink, sexy, fun type of cancer. It is deadly. And it's not a patient's fault when the cancer comes back. She or he - because men get breast cancer, too - can have the most aggressive treatment possible and still recur metastatic. About 20 or 25% of early stage people recur as the metastatic cancer. And then there are some people that, like me, are diagnosed metastatic from the beginning.

GARCIA-NAVARRO: Dr. Lynce, is everyone at risk who has been diagnosed with breast cancer for having it become metastasized?

LYNCE: Yes, I have patients that I see in the office with stage 1, and they say, well, I had my surgery. Everything was taken out. I am good. And even patients with the lower stages, they are at risk of developing metastatic breast cancer, that that's what we are discussing today. Having said so, this is very important to reinforce what Julia just said, that it doesn't mean someone that had early stage disease and then develop stage 4 disease. It does not mean that they did something wrong - OK? - that they were not as aggressive as they should be or they did not pay attention. No, unfortunately, many patients that do everything right, they still develop stage 4 disease.

GARCIA-NAVARRO: Is enough money going into research?

MAUES: Definitely not to metastatic research. It's about less than 10% of the breast cancer money goes into research for treatment of metastatic disease.

GARCIA-NAVARRO: And you've been lobbying on Capitol Hill.

MAUES: Yes, so this is an important week for metastatic breast cancer. We come here once a year and ask members of Congress for things that matter for people living with metastatic breast cancer. I had friends that were here with me last year that are not here this year because they've passed away. I have friends that are on wheelchairs being pushed around Senate offices to ask for more resources for research, to ask for the Metastatic Breast Cancer Act to be passed, which is going to take away the waiting period for us to get disability. As a metastatic cancer patient, you do get this disability already. But once you stop working, you have to wait five, six months to start receiving your benefits. And many people can't afford to do that and end up working until the time where they pass.

GARCIA-NAVARRO: Julia, we know each other, but you hadn't told me about your cancer until recently. You have become involved in outreach on this disease, and you wanted to come and talk to us today. Why?

MAUES: I think this really matters. I think we do need to educate stage 4 patients on what they're living with, but I think we need to educate everyone.

GARCIA-NAVARRO: Julia Maues is a metastatic breast cancer survivor and an advocate. Dr. Filipa Lynce is a medical oncologist and associate professor at Georgetown Lombardi Comprehensive Cancer Center.

Thank you to you both.

MAUES: Thank you.

LYNCE: Thank you.

(SOUNDBITE OF ANDY GRAMMER SONG, "FRESH EYES") Transcript provided by NPR, Copyright NPR.