Living with MBC in the Latinx community

[00:00:00] Adam Walker: The Real Pink Podcast is supported by Bank of America. Bank of America

From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.

Breast cancer is the leading cause of cancer deaths for Hispanic and Latina women in the U.S., a fact that has driven today’s guest to become a passionate advocate for health equity in the Latinx community. After her diagnosis in 2018, Idalia Guzman realized that living with MBC was possible and that she could continue to have a productive life while enduring the treatment’s side effects. In fact, she is fortunate enough that she was able to continue with her doctorate degree studies and work full time while raising two teenagers. Idalia is part of Komen’s newly formed MBC Steering Committee, which seeks to ensure the unique needs of the MBC community are integrated across Komen’s programs and initiatives. She also has provided feedback for the development Komen’s MBC Impact Series focused on the Hispanic/Latinx community and participated in Komen’s Race for the Cure in Puerto Rico. Sharing her experience and knowledge with other patients gives her a sense of purpose, so we are thrilled to have her on the show today to share her experience of living life with MBC in the Latinx community. Idalia, welcome to the show!

So we are thrilled to have her on the show today to share her experience of living with MBC in the Latinx community. Idalia, welcome to the show.

[00:02:00] Idalia Guzman: Thank you.

[00:02:02] Adam Walker: I’m very excited to talk to you.I’m very excited about your perspective on these things. So let’s start by talking about your experience. What has your experience been like as a patient, beginning with your diagnosis? When were you diagnosed and, and what was that like for you?

[00:02:16] Idalia Guzman: Okay. I was diagnosed on November, 2018. I didn’t have any symptom I believe, but I was doing a self exam and I felt this little lump and right away, next day I was on my doctor’s office to have a mammogram and have a son just to find out what it was because I didn’t like it so right away, she mentioned to me that there’s a high possibility was breast cancer.

So that very same week I had a bio biopsy and the result came back pretty fast. And it was like it was breast cancer and my subtype is triple positive, positive. And at the beginning I thought I was an early stage cancer, but I was like not paying attention to my body signs. I was feeling this pain on my near.

My shoulder, neck, and also some place within my hip. But you know, you, you are living a very hectic life and you have kids school work, family activities, etcetera. So you procrastinate your own health and which is a huge mistake. And. So I didn’t pay attention to that. I decided that I was going to take care of my lump.

And when I had my first appointment with my oncologist she asked me, do you have any other symptoms, something else that you want to talk about? And I remember the pain and I said, yes, I do have a, this pain in these two areas, but I’m not sure how to. Exactly to pinpoint, pinpoint where it is. And she, thanks to God.

She see, she say, well, let’s do a pet scan to see if you have something else. I wasn’t expecting to, to have lessons in my bronze and spine, but it came back with correlations. And she mentioned to me that I was metastatic Denova, which is from the, from the beginning. So that’s how start. It was really fast.

Everything fortunate enough to have like an amazing team of doctors and a awesome healthcare health insurance, sorry. And I was, I was able to. To check everything and to move really fast, to have my port implanted and to receive treatment in December the 28th was my first treatment. I was diagnos diagnosed on November eight, 15, so I think was fast

[00:05:11] Adam Walker: So I wanna make sure that I got this right. So you were diagnosed on November 15th. Your first treatment was on December 28th, right? And in what, around what time did you go to the doctor for that initial visit? How fast was that?

[00:05:25] Idalia Guzman: As soon as I have the, I, as soon as I fell the lump, I, it was the, the day after my 42 birthday. Okay. My radi radiologist office. And then I have the biopsy that very same week. And then she sent me to an oncologist and also to a surgeon for port and maybe consideration of mastectomy. Because at that time she thought it was our early stage cancer. And also I have my genetic testing right. Done. I have a memoriz of the brain spine.

It was so fast. I was living. Practically in the hospital entire month of December. Wow. So yeah, I took sometimes from work and now I realize it was really fast, but back then I was thinking this is taking so long.

[00:06:18] Adam Walker: I, yeah, I can, I can imagine you wanna know the answers, right. When you’re, when you’re sick, you wanna know the answers immediately. It’s so hard to not know. So, so then what does your treatment look like today? I mean, you’ve been diagnosed with MBC. Do you have good access to care and, and what barriers have you had to overcome for, for care?

[00:06:36] Idalia Guzman: Well, I’m currently on SEP Projeta XGEVA for the bones and also AEX. Okay. Yeah. So that’s treatment my first, I’m still on my first line of treatment.

[00:06:50] Adam Walker: Okay. Got, so your, in your first line of treatment and how, how has your access to care been?

[00:06:56] Idalia Guzman: Well, it’s been, I will say like 90%. It’s been great. I did have some bumps on the road but I manage them with direct communication with my health insurance and also with my patient Ambu. I had to, to file a complaint because there was some point during my treatment that for some reasons, pain changed in my health insurance and they decided that I need to get my medication from the United States instead of having from the specialist pharmacy in Puerto.

So there was, are delay in my treatments. And when your doctor tells you that you’re supposed to have your treatment every 21 days, you wanna have your treatment every, every 21 day, because you think that cancer is going, you’re going have progression. So I was having a delay or my treatment and. They managed to get me back to.

So now I’m a C I receive my supply, my meds from a local specialized pharmacy. But other than that, it’s been, it’s been that good. Okay. That’s fantastic. That’s I’m glad that it’s been at least 90% good good experience so far, right? Uh that’s that’s an a so, so talk a little bit about, you know, your, your partner of the Latinx community. How has that influenced your experiences throughout your treatment and living with

MBC? Well when I was diagnosed, I was trying to reach out to someone. In Puerto Rico, because I want to, to connect with someone in Puerto Rico that has my same diagnosis, or at least metastatics maybe not with the metastasis metastasis in the bones, but somewhere else.

And I did not find a work group here in Puerto Rico. I did find someone else who was living with metastatic breast cancer, but she wasn’t aware that she was living with metastatic breast cancer. So she saw herself as an early stage. And when I was talking to her, I was realizing that she’s maybe she’s in denial or maybe she’s not aware that her conditions stage four, Satia has no cure.

So it I’m trying to build up a community community in Puerto Rico of other patients. So right now I am partnering with with another advocate she’s with another organization and it’s been, it’s been really hard to get other Latinas here in Puerto Rico to belong to this group. And I’m not sure if this is some something cultural.

That maybe we, as a Latina, we don’t speak so much of our disease or maybe there is a lack of education or a combination of both. So our interest is to build this community in Puerto Rico, because my, my experience that I had to reach out to other patients in the United States and also in Spain, I.

Contact another organization in the space for metastatic breast cancer patients.

[00:10:23] Adam Walker: Well, you know, I love that, you know, you didn’t find a community that was there to help you. So now you’re creating a community to help you and to help others. That’s, that’s really amazing and very admirable. So just, you know, really, I really admire that.

So I understand that you, you, you mentioned earlier, you had a very active. You still have a very full and active life while you’re still going through treatment and all of treatment side effects. Can you tell me a little bit about your studies, your work and your home life and how you’ve been able to manage it all?

[00:10:56] Idalia Guzman: Well, yes. At the beginning, wasn’t all. That in that way, because when you are diagnosed with cancer and with metastatic breast cancer, you think that you are going to die. I mean, I thought that I was going to die within the next two years. because that’s what a shows may they may not be as updated as you would like to, but while I was looking for information, that’s the data that kept showing up.

So like the median. Two years, maybe two years. So but then I endure treatment pretty well, and I learned to manage the side effects. And after the chemo and radiation, I noticed that I was feeling better with the percepting on the Progeta. So I said, OK, I can do this. So I decided. To live my life regardless of my diagnosis, because my diagnosis does not define me as a person.

And also I have two teenagers. I just don’t want through their life to be around cancer all the time. So I said to myself, well, you know, you can manage this. You can deal with it. You are going to comply with all your treatments or your imaging screening, all that stuff. And sometimes you get tired because it’s too much.

And sometimes I don’t want to, to plan my vacations or my life around my 21 days for treatments. And. You know, sometimes it’s overwhelming, but I see that as, as this is what it takes for me to be well for my family, my kids, and for myself, I. I say to, I say to miss myself, okay, you have to do this.

That’s the only way that’s the option. You there’s no other option. It’s either you comply with their treatment and you use lifestyle or you are, they’re going to die. So I think I’m blessed because I did have a good response to treatment. I know the norm or people have the same response. Also I had, I was working with my doctorate degree.

 I just want to finish it because it is, that was a goal that I had from. I’m in the last stage of my degree, I’m in dissertation. So I’m being dragging my feet for a while, but I just need to finish my last three chapter. So that’s something that I need to comply with. I’m trying to concentrate my efforts to finish that steps.

 Also. I have a support system. I don’t have any siblings. I just have my family. I have no father, no mother because they pass away when I was a kid. So all of that I have is my partner, my kids, my pets my, my, and really great group of friends. That’s for me.

[00:14:06] Adam Walker: That’s that, I mean, that’s so inspiring, honestly. I mean, to, to be going through the treatments that you’re going through and still continue to live your life and still work towards your doctorate is just so inspiring. I’m just incredibly

[00:14:24] Idalia Guzman: impressed. I did switch my mind with my mindset with my work because I was, I still working full time, but prior day diagnosis, I was like having. I want I’m, I dunno how to say my work was extended into my weekends, so now I learned that whatever is done is done and what is not finished there’s tomorrow. That’s right. That’s right. So yes, that since change that I had with to make, to be able to continue to work for.

[00:15:06] Adam Walker: Well, and that’s such an important perspective to have to recognize that at the end of the day, the work day, there’s always more work to be done. And at some point you have to stop and pick it up next week or tomorrow so that you can live your life now with your family and working towards all of your goals and building a community. And in all of the other amazing things that you’re doing. So Why talk a little bit about why is it so important for you to share your experience and your knowledge with other patients?

[00:15:37] Idalia Guzman: For me, what has helped me to deal with this disease is that I try to educate myself of my condition because that’s what is going to empower me to. To have like more control. I don’t know if I’m making sense, but, but whenever I see my oncologist, I have. To, to three questions that I would like some answer either for treatment or I ask him or her, what if I have preparation?

What are my options? Because I want to know in advance what I will be facing. And I would like to read about that in advance. It may be an option. It may not, but I’m ready. So to face whatever it takes. Okay. So I think it’s very important for, for our patients to be educated and to be your own advocate, because sometimes you may have like a symptom.

 Your Dr. May overlook it, but you. Insist. Okay. I want to have this yet because it’s, I’m not feeling well. Mm-hmm so education understanding your disease, your subtype, your line of treatment, your possible side effects is for me, is very, is crucial to, to, to deal with metastatic breast cancer.

[00:17:16] Adam Walker: So, so, so then related to. Your ability to educate yourself and the importance of educating yourself. Can you recommend some resources that have helped you and that you would recommend others look into for people living with MBC?

[00:17:31] Idalia Guzman: Yes, I I like to, you know, because when you are looking for, for information about this condition, there’s so many. Information experiences, testimony that shows up and you need to refine your search. And I like to read our journal article articles instead of a newspaper article. I think that a journal general article about a recognized magazine like oncology or someone else has only more. Substantial data to, to, to

[00:18:18] Adam Walker: Yeah, it’s, it’s more complete information, right?

[00:18:21] Idalia Guzman: Information, reliable information also. Right. And you do look information in common and there is like many options to, to get, to get educated over this country. I think that now. Even with Susan G Komen, metastatic breast cancer is like showing up more in the searches because there is like some sort of invisibility of disease, especially among early stage failures.

They don’t want to hear about metastatic breast cancer. And sometimes I believe that doctors. Do not mention the possibility to, to those patients that are in that the cancer may reoccur in stage as stage four. So it’s very important, not only for us metastatic breast cancer to be educated, but also, I, I believe that there seniors should learn about.

What may happen. It may not happen, but there is a 30% is that to show that there is a 30% that may have every occurrence of this.

[00:19:34] Adam Walker: Yeah. And it’s really important to, to know, and to be aware of, of all that. So Idalia, last question. What would you like other MBC patients in the Latinx community to know?

[00:19:48] Idalia Guzman: Well, I would like them to know is. Whenever you have a system symptom, please get from medical attention. There is according to statistics Latinas and Hispanic, there is a cultural thing that they don’t get prompt attention. They don’t seek medical attention on time. And when they are diagnosed, they probably are on the advanced.

So as soon as they have their first medical visit, please continue your screening. If they recommend you a biopsy do so, it’s very important.

Talk about your condition, talk about your disease. There’s nothing to be ashamed of. And I do mention that because at the beginning I was ashamed of having made a study breast cancer because I felt some sort of guilt that I was like, my fault that I had breast cancer, because I was paying attention to my body.

I wasn’t doing proper screening of my breast as actually have so. I already made peace with those. So it’s tough, but it’s very important to, to seek medical attention and to get educated to reach out to other patients, either Latinos or not. Cause I didn’t find any other Latina that then back then, but I did join other social media.

Groups in Facebook Instagram and I reached out to their patient because I needed to, to talk about what was going on. No one else can really more than another metastatic breast cancer patient with you.

[00:21:48] Adam Walker: Yeah, that’s right. And that’s such great advice. And, and I think in particular, your advice to educate yourself, On these things so that you know, what’s going on. Idalia, I mean, this is your story is inspiring your work and your study and your dedication to family and community is inspiring. And I just can’t. Thank you enough for joining us on the show today.

[00:22:12] Idalia Guzman: Thank you for opportunity to share my experience with everyone. Okay.

[00:22:20] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit For more on breast cancer, visit Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog,