Diagnóstico de cáncer de mama (seno) a los 26

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org senior editor Jamie DePolo .

Jamie DePolo: Hello. As always, thanks for listening.

Being diagnosed with breast cancer at any age is frightening and unexpected, but if you’re diagnosed in your 20s, before any type of screening starts, it can be especially upsetting. Our guest today is LaShae Rolle, a PhD student in public health studying cancer disparities at the University of Miami, who was diagnosed with breast cancer last year at age 26.

When she found a lump in her breast, she wasn’t concerned, because no one in her family had ever had breast cancer, but with a background in cancer research, she got a checkup just to be safe. A mammogram and ultrasound found at least eight cancer tumors in different quadrants of her breast. LaShae joins us to talk about her experiences, including how power lifting helped her side effects and how her diagnosis is informing her research. LaShae, welcome to the podcast.

LaShae Rolle: Hi. Nice to be on.

Jamie DePolo: So, I gave kind of a quick summary of your diagnosis, but could you sort of tell us a little bit more about why you decided to have a checkup after you found the lump, and then how you felt when you were diagnosed, because being diagnosed so young has got to be very shocking.

LaShae Rolle: So, one of the main reasons why I decided to go ahead and get a checkup was because I monitored the lump. So, when I first felt it, it was kind of small, and then, after a while, I noticed that it grew, and I was like, that’s a red flag. You know, it might be nothing, but you’d want to get it removed. And so, I said, okay, I’m going to go ahead and go to the Student Center. So, I’m at University of Miami.

I went to the Student Center, and they were able to, basically, tell me that, you know, they believed that it was nothing. It’s probably a fibrous tissue, something like that, and so, they then gave me a referral to get an ultrasound and a mammogram at Sylvester Comprehensive Cancer Center. And I thought, okay, this is good. I know that, for a fact, they’ll be able to figure out what it is, because it’s an NCI-designed cancer center.

So, I was like, by background, I knew it’s a top-level care facility, and when I got there, they weren’t even really alarmed or anything, at first. I think mainly because of my age, as well. They just said, okay, we’re going to do an ultrasound. It’s going to take maybe 15 minutes. And it didn't take 15 minutes, long story short. So, what happened is I went in, and the second they put the ultrasound wand on my breast area, facial expression of technician changed, and I was like, okay, and then she asked me how long have I had these masses, and it was with plural. I was like, wait, wait, wait.

Jamie DePolo: Because you had only felt one, correct?

LaShae Rolle: Yeah. I thought this was one. So, I was like, okay, this already is going kind of weird, not in the right direction. And then she stayed on my breast for a long amount of time, and you know, she went and said I’m going to do a 360, and I’m like, oh, my gosh, you’re doing a lot of stuff, and then I went and did a mammogram that same day. I wasn’t even scheduled to do a mammogram. I was scheduled only to do the ultrasound that day, even though the order was in. And so, I was like, I knew, A, it wasn’t good.

They were seeing something. I knew something was there, but I just thought there was, you know, a lot of emphasis on this. Immediately, me not having an appointment, being just pushed to the front of the line to do a mammogram. And then I tried to leave, like I said. You know, I’ll see you all when you have the results, and they said, no, no, the radiologist is going to come and talk to you right now, and then they put me in a quiet room, and I was like, this is like a TV show right now. Like, where they put people in a quiet room to break bad news.

And so, I already had a feeling it was not going the right direction, but you know, I’m holding onto as much hope as possible, but when the radiologist came in, her facial expression, it was serious. Like, it was very...I don't know how to explain it. Like, she had some concern, but she wasn’t, like, overly, you know, kind of freaking out to make me then freak out. And she let me know that I had multiple calcifications all throughout all four quadrants of my breast, and I was like, what?

And she let me know that I needed to do a biopsy as soon as possible to confirm my disease, and I was like, what? To confirm my disease? And I just was like, oh, my gosh, this is not good. And so, I sat on that for about a day, just wondering, and then MyChart popped up, and I saw what the report said. That’s when I got extremely worried, because I saw it said I had calcifications spanning 12.7 centimeters, and I’m like, I don't know what that even, like, means, and it also said BI-RADS 5.

And so, it doesn't, you know, take me long to go on the American Cancer Society or you know, a trusted source and see that that means you have at least a 95% chance, or more, of having cancer or you know, some malignancy. And so, I was like, they’re essentially saying to me, this looks like a casebook breast cancer case then, because they’re very sure, you know? Like, for research studies, you have, like, a 95% confidence interval.

Like, they’re basically very sure of this. And so, the next day, I had a biopsy, and I was like, oh, this is just terrible, and I think...so, I went through chemo. I’m currently going through radiation. I had a mastectomy, but honestly, one of the hardest pieces, if not the hardest, like, parts of this journey, has been that week, from when I had the ultrasound to when I had the biopsy to my diagnosis. Just that waiting.

Like, so, I was just there waiting and waiting the entire...it was only two days. What’s crazy is I think about it. I had the biopsy on Friday. So, no, it was really three days. The biopsy on Friday, and then I had the results given to me on Monday morning, and you know, that’s just Friday, Saturday, Sunday, and then Monday flips around, you get it. It felt like at least two months, like, honestly.

Jamie DePolo: I’m sure, because that’s all you’re thinking about for that whole time.

LaShae Rolle: All day. All day.

Jamie DePolo: Yeah, and I know you’re a PhD student, originally from the Bahamas. Do you have family? Like, did you have people that you could sort of talk to and decompress with?

LaShae Rolle: Yeah. So, from the get-go...so, right when the radiologist let me know that she saw multiple calcifications in my breast, I called my mom, and I said can you explain this to my mom, because I don’t even think I could repeat this, like, right now, like, because it was just very overwhelming for me. And she went ahead and said that...she said that, you know, she’s going to need...she, meaning me, is going to need your support through this, and I’m like, support through what?

So, I just feel like they knew this was, like, a textbook case. Like, how it looked, it must’ve been so obvious that it was breast cancer. So, I had my mom, I had my dad. My parents, they came, and they were with me for every chemo cycle, and my dad, the second I was diagnosed, he left. He, you know, got leave from work, and he left from February all the way until May. He lived in my apartment with me and took care of me and helped me with everything.

Jamie DePolo: Oh, wow, that’s really sweet that you’re so fortunate, but you know, what’s...well, I don't know if interesting is the right word, but you’re a researcher. You study cancer. Yet, your reaction, the overwhelming...the fear, the I don’t even know if I can repeat this to my mom. I hear that from so many people, and it just seems like no matter what you know or what your background is, it’s just always the same. It’s just like this tidal wave hits you.

LaShae Rolle: Yeah. I think one of the reasons why I think it’s a lot is because breast cancer, and pretty much every cancer, is just like you’re diving into the unknown. You never know how your individual case is going to be, because cancer is not a one-size-fits-all approach. It’s very unique and tailored. Like, so, you never know, and at the time, I didn't know anything about staging, either, and prognosis. All I knew is that, from where they took the biopsy, that sample was malignant, and so, that could be anywhere, for all I know. I could not have a good prognosis. I don't know what the treatment would entail. There's just so many questions with no answers at the time, and so, I think it’s just the lack of surety and clarity is what is so stressful.

Jamie DePolo: So, you mentioned a little bit about your treatments. You said you had a mastectomy and then chemotherapy, and then you’re currently in radiation. Was the cancer hormone receptor positive? Are you going to be on anti-estrogen therapy, then, after radiation?

LaShae Rolle: Yeah. So, my cancer was estrogen and progesterone positive. So, I take my Zoladex shots every month, and I’m going to be on an AI soon, an aromatase inhibitor, for those who might...yeah. So, I will have to do that, and you know, it’s just so long, because one of the things you think about is, when am I going to be out of treatment? And so, I’m going to treat it as after the surgery, check. After the chemo, check. In progress for the radiation. So, after that, I feel like I’ll be done, but in reality, some people, you know, would like to think that the five to 10 years after, when I have to be on the hormonal treatment, is going to be a hard treatment. So, it’s like you’re in this loop forever, but yeah, that’s my current plan.

Jamie DePolo: Okay, and I know you’re a powerlifter, which is super cool. I lift. I don’t compete, but I think that’s super cool that you’re a lifter. Did you have to take time off from your lifting schedule after surgery or after chemo? How did you fit that in, because I believe I read something in another interview where you said that you felt like exercise and lifting helped with some side effects.

LaShae Rolle: For me, I kept powerlifting, and that’s mainly because of the work that I’m doing in my lab for research. So, what we do in the Crane Research Lab is we work on diet and exercise interventions for patients who are either, you know, in treatment. We work on prevention, so prior to diagnosis, and we also work on survivorship, so all throughout the cancer care continuum.

And so, what I knew coming in was that you have a lot of benefits when it comes to exercise, and my modality, which I like to do, is the strength training side. You know, aerobic training is great, and you know, but I’m the type of person who, you got to force me to do that aerobic training, and I’m doing it. I’m doing it because it’s beneficial. It’s all beneficial. But I knew that it could help me with a lot of the side effects, particularly fatigue, which is the big one, especially during chemo and radiation, because it’s like...

You know, it feels so bad, and even if you can feel 1%, 2%, 5%, whatever percent better, I’m sure anyone would want to feel that just little bit better, because it’s just, it’s a very hard time, if I’m being really honest, going through chemotherapy. Radiation, I don’t have much feedback yet because I’m not done. Like, I can’t give you full feedback, but yeah, I know that strength training and aerobic training, any form of exercise, that can definitely help you with pain, as well, fatigue, pretty much a lot of those negative side effects that you don’t want. You don’t want any. You don’t want any.

Jamie DePolo: Right. Did you have to...did you have to kind of back off the weight a little bit during treatment, or did you just power through?

LaShae Rolle: If I’m being honest, while I would not recommend everyone do this, if you look on my Instagram account right now, I have a video of me benching 253 pounds, squatting 400, a little over 400 pounds, 408 pounds, and then deadlifting 405 pounds less than 24 hours before my final chemo. So, that just goes to show you what I was doing throughout my journey.

The only time I backed away from lifting was right after my diagnosis and before the mastectomy, and that’s only because, in my situation, one of my tumors was 1 millimeter away from my nipple and 1 millimeter away from my pectoralis major. So, if any muscle were to grow...I mean, I don't know if this is true, but this is just me thinking, overthinking. I feel like, if my muscle were to grow 1 millimeter or 2 millimeters into, you know, the tumor area, I wouldn't want it to then spread. So, I just was, in a way, scared to do that, and so, I would focus solely on the aerobic side of things. Can you believe it?

Then, after my mastectomy, I didn't lose much strength, so I just hopped right back on what I was doing, and I powerlifted through chemo. So, it took me about two weeks after my mastectomy to gain, you know, good range of motion, and at four weeks, I had full range of motion, which is unheard of after a mastectomy, but I did a lot of things that I learned within my lab and from my research, and I did a lot of stretches with physical therapy. That’s a big thing I’d recommend to everyone. If your doctor does not recommend...I mean, does not tell you about physical therapy, go into their office on your next visit or through the portal.

Let them know you’d like a referral to physical therapy, because it’s very beneficial, you know, even before. Before and after a mastectomy. So, I think prehab and then doing, like, you know, the rehab afterwards would be great, because I like to think about my whole cancer experience as, you know, an ACL tear when it comes to working out in the gym. If you tear your ACL, you do prehab before. Then you rehab it back, and you get back to where you were before or even better. You know, you try to rehab and get back, and so, that’s what I did and how I approach things.

Jamie DePolo: Excellent. I do want to ask...because I have talked to some women who, after breast cancer surgery, they’re very, very concerned about lymphedema and strength training, and I know strength training is recommended. It’s recommended for fatigue. It’s recommended for weight loss, because gaining weight after a breast cancer diagnosis can increase the risk of recurrence. But they’re very, very concerned that lifting weights is going to trigger lymphedema, and it doesn't sound like that happened to you, and as somebody who’s been treated for breast cancer and is also a heavy-duty strength trainer, could you just talk a little bit about that?

LaShae Rolle: I think anyone who has a mastectomy and who has quite a few lymph nodes removed, you are going to be very concerned about lymphedema, but for me, I had 13 lymph nodes removed, and that’s on the higher end, anything that’s in double digits, and so, what I did was I wore my compression sleeve whenever I would lift heavy and if I do aerobic training and if I’m out in the heat, as recommended, because when you travel and you’re out in the heat...or if you exercise, it’s recommended that, at those times, you wear your lymphedema sleeve...or I mean, your compression sleeve to prevent lymphedema. And I don’t believe that it causes that, and I’ve read studies where, actually, it helps prevent and you know, stop lymphedema in its tracks. But I can see how you would think that, because, like, when you lift, you naturally like...you do kind of get bigger. Yeah, you do build muscle, but yeah, in my experience, I have not experienced that, and I’ve lifted pretty heavy, 200 and something pounds on bench press during treatment.

Jamie DePolo: That’s great. And I think, too, some of the research that showed that weightlifting actually helped is more recent, and you know, it wasn’t really studied, and so, you know, this thing just kept being passed down and down. Like, you know, don’t lift anything heavier than a gallon of milk, or you’re going to trigger lymphedema. So, I’m very glad that, you know, you’re taking precautions, but that that’s not happened to you.

Now, I’ve also read, right now, that you’re in four clinical trials.

LaShae Rolle: Yes.

Jamie DePolo: So, I’m hoping you could tell us a little bit about that. Like, how you found them, why you decided to enroll, and what’s going on?

LaShae Rolle: Honestly, I think one of the biggest reasons I’ve been able to enroll in so many clinical trials is because I’m at an NCI-designated cancer center, and so, you know, they push forward all the research, And so, I actually haven't had to go out and search for them. They actually came to me. A lot of...because study coordinators have reached out or came and asked me if I was interested, and I do my best. If I think that I can be a good participant...and what I say by that is I can be compliant, because I know for a time, what it’s like when someone enrolls and they’re not compliant.

So, I was like, I’m going to be a good person. I’m going to make sure that I can be compliant and do everything and help get the best data out there. And so, if it was something that I think can push change, I enrolled in it. I’m a Black woman, and so, I know that, you know, clinical trial diversity is very important, and so, I said, if I can contribute any way, I’d like to make sure that there are participants who look like me so it could actually be impactful for other Black women or women of color or just any woman who, you know, is just not your standard, someone who is a minority or marginalized population.

One of the studies that I’m in is around mental health, and that’s, you know, kind of taboo, usually, in any, you know, kind of minority and marginalized community, and so, I made it a point to be a part of that study to actually push that forward and help us see how mental health during breast cancer treatment impacts people who are similar to me, and I mean, and the whole population. At the end of the day, we want everyone to receive the best care possible, and so, that study basically helps you with side effects and symptoms and how the psychosocial aspects, you know, like, just all that together.

And so, another study that I’m in is for one of the aromatase inhibitors. So, instead of taking the standard of care, I’m actually going to...if I’m randomized to the intervention group, I would be given another drug that has less side effects than a letrozole or something like that. And so, yeah, I’m excited, but I can’t officially start or be randomized until after radiation. So, I’m just in a loop right now, but I say I’m enrolled because I’ve done everything except sign the informed consent, and I’m eligible.

Then, the other two are all clinical trials for women who are of African ancestry. And so, looking at what are some of the causes for us women who are, you know, of African descent, having such young ages for breast cancer diagnosis and such aggressive cases. Because, as you know, for breast cancer, we tend to have more triple-negative cases, young, Black women. While I’m not someone who was triple-negative, still, adding to that pot, you know, of looking at my genetic ancestry, it’s great. I think it’ll be so worthwhile, because if you think about where I’m from, I’m originally from the Bahamas. Women who are diagnosed with breast cancer, about one-third of them have the BRCA mutation. It’s insane.

Jamie DePolo: In the Bahamas? Really? I didn't know that.

LaShae Rolle: In the Bahamas.

Jamie DePolo: Wow.

LaShae Rolle: Yes. Yes. We have one of the highest prevalence of the BRCA mutation among women who have breast cancer. So, when you look, it’s a high likelihood. So, yeah, I just want to help push that forward and just contribute in any way, because, you know, as someone who aspires to be a principal investigator of clinical trials, I’d like to be able to say, when I’m trying to have someone enroll or when it’s the first day of the trial, I’ve been there. I know exactly what you went through, and my only goal is always going to be for us to get the best data for people like me and you, cancer survivors.

Jamie DePolo: Wow, that’s great. That’s so great. And you know, you mentioned the mental health trial. It’s just, it’s so important because if the population of the trial isn’t diverse, then how can you apply the results widely? So, while, you know, maybe we know a lot about how breast cancer affects the mental health of white women, but is that the same? We don’t know because we don’t have a critical mass of people, other than white women, in the studies. So, I just...you’re right. It’s going to be so helpful, and you know, what you’re doing will help so many people. That’s so great. So, thank you.

LaShae Rolle: Yes.

Jamie DePolo: Now, I also read that, I believe, your diagnosis has slightly changed the focus of your research, and is that true? Could you talk a little bit about that?

LaShae Rolle: So, prior to my diagnosis, I’ve always been very interested in cancer disparities, and the thing is, to be honest, why I think it has slightly changed is I think the AYA was such a marginalized group. I had no idea that the AYAs faced disparities.

Jamie DePolo: I’m going to ask you to explain what AYA is, just in case someone doesn't know.

LaShae Rolle: Oh, yeah. AYA is adolescent and young adult. So, they are individuals diagnosed with cancer between the ages of 15 and 39.

Jamie DePolo: Okay, thanks. Go ahead. Sorry.

LaShae Rolle: Yeah. So, I didn't actually know that that was a group that faced disparities. And when I became part of that population, I quickly realized one disparity off the bat. Because of our age, we’re in the age bracket where you are going to have children or want to have children pretty soon, and so, fertility was big on my mind, because they let me know that the chemotherapy drugs that I’ll take could potentially make me infertile. And I was like, so, wait, before I start the chemotherapy, I have to figure this out and figure if I want to have kids and I have to figure out if I can afford this and how I’m going to do this?

But luckily, Livestrong was great. I’m telling you, I remember that yellow band I got one day when I was, like, a teenager, and now I’ll never forget it. Livestrong. I mean, I’m sure a lot of people know about what they do for fertility, but if you’re an adolescent and young adult, they help you a lot with your expenses when it comes to fertility. And without them, I would not have been able to freeze my eggs. So, that was something that was really big. And then, another thing that AYAs tend to face are just feeling alone, because, when you look around, you go to the cancer center, there’s absolutely no one who’s around your age.

People are looking at you like, oh, why are you here? Like, you know? You know, there’s people here who have cancer. Why are...and I’m like, one of them. I’m one of them. And when I went to go for one of my appointments, I guess the nurse didn't, like, look at the date of birth, and they’re just looking around like, where’s my patient? Or when I go with my mom, they go to weigh me in, and they ask my mom to get on the scale. I’m like, no, I’m the patient. So, that’s a big thing when it comes to being an AYA and just dealing with insurance and stuff and cost.

So, like, we’re very young right now, so we haven't had time to establish that wealth. Like, most people build their wealth now and try to get their careers on track and go to college when they’re between that age that an AYA is in, and some AYAs, you never get an opportunity to go to college, because it’s just in the hospital all day. You never get an opportunity to either maintain or get a job. It’s you’re in the middle of pediatric care and now getting into adult care when you’re in that age group, and there’s kind of no place for us, because there’s only about 74,000 cases a year. So we’re a very minute minority and marginalized group.

Jamie DePolo: Right. Right. And you know, talking about insurance, as well, I know some folks, like...right after I graduated from college, friends were like, oh, I don’t need health insurance for a couple years. I’m young. You know, what’s going to happen? And you know, so, that can be a big problem, too, if there’s, you know, lack of insurance, or lack of...I shouldn't say...like, enough insurance, rather, you know? They get the very stripped-down, least expensive plan possible that may not cover everything.

LaShae Rolle: Yeah, and on top of that, we tend to not get diagnosed early enough. We tend to have later stages because nobody thinks it’s kind of possible. I mean, in reality, when I think about it, I’m upset, but at the same time, like, someone who’s coming from an epidemiology background, I can kind of understand why they think that, because it was a less than 1% chance that I’d be diagnosed with breast cancer.

Sure, but I still think and advocate for self-breast exams, if that’s how it’s going to be, and then, if you see something or you feel something, go ahead and tell your primary care physician, and then try to get a referral for at least an ultrasound. They might push back on the mammogram. I get it, but the ultrasound, if you’re feeling something or...they should do that, at minimum.

And yeah, that’s one of the things that really stood out to me, is that, what would happen to me right now...where would I be right now if I would've said, okay, I’m just too young for this? If I didn't do cancer research, I would've said, well, breast...that would not...that, still, was not even really on my radar, to be honest. So, I think it’s very important for young adults to understand that it could be you. It’s a low likelihood, but you know, just make sure that you’re aware of your body and what’s going on with it.

Jamie DePolo: Absolutely. Well, and that’s kind of a segue. I don't know if I need to ask my last question or not. But I was going to ask you what advice you might have for other young people who are really...they’re too young for all the cancer screening guidelines. Like, you know, I know there’s a lot of different recommendations for mammograms, but most of them say start at 40. And then, so, you’re clearly not 40, and you know, there’s a whole bunch of other things that...you know, like colon cancer or other types of cancers that are on the rise in young people that they’re really too young to be screened for. So, you know, are there other things that you would recommend, especially now that this is like your area of research focus?

LaShae Rolle: Yeah. I would say do what I am going to keep doing moving forward. Advocacy. Advocacy. Go and advocate for yourself, because the thing is, not everybody is going to have a background in cancer research or any kind of research or feel confident actually standing up for themself, but go ahead and do it. Even if nothing’s wrong with you, it doesn't matter, because, moving forward, after this experience, oh, I really don’t care.

Like, I’m going to end up going to the hospital right now for the flu, and I really don’t care, because if I would've had that same kind of attention, if I would've been on alert, like I am right now, maybe I would've caught it even earlier. So, you know, I’m just going to say advocate for yourself. And one of the number one things that you can do is do self-breast exams. That is what saved my life. When I was 10 years old, my pediatrician taught me how to do a self-breast exam, and that’s how I found my cancer, and also, if you’re a man, still do that.

Still go and check yourself, because men can get breast cancer, and I think, for the other cancers that are rising, like you mentioned, colon cancer, if you feel anything that’s off, even if you think, okay, I have bloating or whatever. It could be something else. Seriously, like, just go ahead and push for that test, because you really never know, and at the end of the day, the main person who’s going to suffer is you. Not the person who’s telling you, oh, you don’t need...no, don’t worry about them. Go ahead and push for that.

Jamie DePolo: LaShae, thank you so much. I wish you so much success with your treatments, with your powerlifting. I can’t wait to watch a competition online, hopefully, and thank you so much for joining us. We appreciate it.

LaShae Rolle: Yes. Thank you.

Thank you for listening to The Breastcancer.org Podcast. Please subscribe on Apple Podcasts. To share your thoughts about this or any episode, email us at podcast@breastcancer.org, or leave feedback on the podcast episode landing page on our website, and remember, you could find out a lot more information about breast cancer at Breastcancer.org, and you can connect with thousands of people affected by breast cancer by joining our online community.