[00:00:00] Adam Walker: 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.
[00:00:17] People who had radiation treatment to the chest area for certain types of cancer early in life have an increased risk of breast cancer later in life. Today we welcome a special guest back to the show, Amy Colver. Amy’s Manager of Health Information and Publications at Komen, and an oncology certified licensed independent social worker who’s worked in the oncology space.
[00:00:40] So she knows more about cancer from an educational standpoint than most. Today she’s here to share that she’s also a cancer survivor and lives with the reality that a treatment she had for lymphoma in young adulthood put her at higher risk of breast cancer. She’ll talk to us about how to process risk and what ongoing care screening and emotional resilience really looks like.
[00:01:02] And above all, Amy knows the power of turning awareness into action and how understanding your risk factors can become more of a source of empowerment than fear. Amy, welcome back to the show.
[00:01:13] Amy Colver: Thank you so much. It’s nice to be here with you again.
[00:01:16] Adam Walker: Well, I, and I’m last time, you know, we, it was more about kind of informing us today’s sort of about your story, and I love hearing people’s stories.
[00:01:25] I think it, it really helps the world to hear people’s stories and so, let’s start there. Talk about your personal experience with cancer and kind of share your story here.
[00:01:37] Amy Colver: Yeah. Thank you. I’m the same way. I think that’s why I went into social work because I love hearing people’s stories. So I’ll start by saying that I hope to share my story
[00:01:47] and that it will help other young survivors and other young people who are at risk. So I’m looking forward to hopefully reaching some of those people today. So to share some of my story with you in February of 2005, just two months before my 19th birthday, I was diagnosed with Hodgkin’s Lymphoma, stage 2B.
[00:02:10] So cancers are staged between one and four. So I had stage two, so on the earlier side, and having a B with a diagnosis just means that I had symptoms. Looking back on it now, the main symptoms I had were fatigue and weight loss, that I was a 18-year-old busy college student working full-time. So I thought, oh, that’s why I’m tired.
[00:02:33] Or as an 18-year-old girl, I didn’t think weight loss was the worst thing. So didn’t really think too much about it. And then a couple weeks before my diagnosis came, I woke up with a really sore throat one day and it was cold in Cleveland. It was winter time. And so I thought, well, maybe I’m just, you know, getting under the weather.
[00:02:53] So I just kept it moving and I went to work and it was really hard to swallow anything. Like even hot tea was painful and I’m like, something’s not right. So I went to the restroom and I looked in the mirror and I had an egg size lump popping out of my neck, and I thought, okay, something really isn’t right here.
[00:03:12] So I talked with my coworkers, talked with my boss. I left work, called my mom and went to the emergency room. And I was there for a few hours and had some blood work and imaging done, and basically the imaging showed that there was a tumor in my chest in addition to the area in my neck that appeared that day.
[00:03:34] So I was referred to a surgeon and had a biopsy, and a couple days later he called my mom and he told her that I had Hodgkin’s lymphoma. And that I would need to be referred to an oncologist. So that’s, yeah, where my story went. So I started chemotherapy and it was rough on me. I had a lot of side effects.
[00:04:03] And the further in that I got into chemotherapy, my blood counts weren’t recovering as fast, so. My oncologist recommended that I take this shot called Neupogen, which helps stimulate your bone marrow so that your, you know, your white cells and things grow back. And so I had that one or two times, but it was so painful for me.
[00:04:27] Like I felt like I just wanted to jump out of my skin. My bones were aching, and so I decided I’ll go in for treatment. If my counts aren’t high enough, I’ll come back. So that’s what I did for. Probably like the second half of treatment. So the day that I got my PET scan results, yeah. The day that I celebrated my anniversary.
[00:04:49] Adam Walker: Wow. That’s that’s quite a lot to go through at a very young age.
[00:04:55] Amy Colver: Yes.
[00:04:55] Yeah.
[00:04:56] Adam Walker: Wow. And I it did, I assume you did you go back to school after that? Like, well I got o ask that question, right?
[00:05:03] Amy Colver: Yes. So I did go back to school the following January.
[00:05:09] Adam Walker: Okay.
[00:05:10] Amy Colver: When I went back to school a year later.
[00:05:12] I had started off in psychology and was taking psychology and social work classes and close to the time that I graduated undergrad, I took a class called health psychology and it was really interesting. I just like felt alive learning about all that stuff. It really resonated with me. And so I got my undergrad in psychology and then went on to become a oncology social worker.
[00:05:36] Adam Walker: Oh, that’s beautiful. Yeah, I love that. And it’s such a, such an important career path that helping so many people. Just really amazing work. So all right. So the treatment that you received as a teenager now causes you to be at a higher risk for breast cancer. Is that correct? And then tell me more about that.
[00:05:58] Amy Colver: Yeah, that’s correct. So, because I had radiation therapy to the chest area at a young age, that puts me at an increased risk of breast cancer. There’s also another couple of risk factors that are unique to my situation. Like only having one child and I had him at 37 and I wasn’t able to breastfeed, so those
[00:06:22] You know, having pregnancies and breastfeeding and those types of things are all related to risks. So those are a part of my picture. And the doctor and the nurse practitioner that oversee my care in a high risk breast clinic have told me that my risk of breast cancer is 29%. So that’s high.
[00:06:39] Adam Walker: Yeah. Wow. I mean, well, I got to ask then. I mean how do you feel about that? Or how do you, or maybe the better question is how do you deal with that?
[00:06:50] Amy Colver: Yeah, I mean it’s hard. I mean, I can kind of share with you what I do now as far as screening, and I’m also on a medication. And so yeah, absolutely.
[00:07:03] So to start with my screening protocol, as I mentioned, I’m followed in a high risk breast clinic here in Cleveland primarily by a nurse practitioner. So I have a visit in the clinic accompanied with a screening test every six months. So at the beginning of the year, around January, February-ish, whenever the dates fall, I have a breast MRI, and then a couple days later, I go into the clinic to have an exam and get my results.
[00:07:34] And then six months later I go back into the clinic for a visit, and then I have a screening mammogram that same day. And then my nurse practitioner, either later in the day or the next day, will send me my results of my mammogram in my chart with a note after she’s reviewed them. So, and then I can contact her, you know, anytime in between if I have concerns.
[00:07:56] So my most recent visit was in February, and at the time I saw the medical director of the clinic who I hadn’t met before. She was newer there. And the nurse practitioner I see just wanted me to meet her in case she, you know, needs to consult on my case or anything like that in the future. And she was the first provider who.
[00:08:17] Really talked with me about the possibility of having a risk reducing mastectomy. So that can be considered in my situation. And to be honest, I’m really still just sitting with that. I haven’t really thought much about that. That was a lot for me to hear and process, and so I figured I’ll think about it again when I get close to my next visit.
[00:08:41] So yeah, so that’s the screening side of my protocol. And then I’m also on a medication called Duavee. So there’s a little bit of a story to that I can share. But basically Duavee is a medication that is FDA approved for treating menopausal symptoms. But it’s contraindicated for people who have had breast cancer and in the
[00:09:07] kind of the risk reduction setting there’s some data showing that it doesn’t increase the risk of breast cancer, but there isn’t any long-term data currently. So that of course is a piece of, you know, why for me to have that information working here at Komen and then it being a part of my decision making process.
[00:09:28] So to go back a little bit, in May of 2023, I was living in Portland, Maine, and I went near Portland, Maine, and I went to Portland to establish care with a high risk breast clinic there. And the doctor I saw said, you know. I would like to talk with you about starting a medication called Tamoxifen, which is FDA approved for risk reduction.
[00:09:55] And I was due for a screening MRI at the time, so she said, okay, let’s get your screening mRI, you’ll come back and then we’ll talk about this medication. Well, in the process of getting my screening mammogram scheduled, I found out I was pregnant with my son. So that kind of sent me on a whole different whirlwind of appointments and I decided to move back to Cleveland so that I could be closer to family with having my son.
[00:10:22] So my breast care kind of went on hold. I mean, I was monitored closely and would have, you know, clinical breast exams and things like that. It wasn’t until a couple months after I had my son that I got on back on track with my screening. So I went back to the high risk clinic here, got reestablished and started had a screening
[00:10:44] test and got back on track. And so when I had my first visit at the high risk clinic here, they again talked to me about Tamoxifen. But you know, they said there’s really no rush. We’ll talk about it in six months when you come back. And so I said, that’s great. So I went back in six months and I really just was feeling off, like having, what I call quality of life type issues. So brain fog, mood issues, trouble concentrating, trouble losing weight. And so I was talking with my nurse practitioner about all of these things and I said, well, I kind of chalk this up to being 37 and now having like a 1-year-old, right?
[00:11:29] Adam Walker: Yeah. 1-year-old can produce all of those symptoms.
[00:11:32] For sure. Yeah.
[00:11:32] Amy Colver: But I’m like, well, I’m now sleeping through the night and I’m exercising. Like something just doesn’t feel right. And so she said, well, you know, if I start you on this Tamoxifen, even at a low dose, it isn’t going to make any of these issues any better. So let’s have you see one of my colleagues who specializes in women’s health.
[00:11:51] So I went to see her and she recommended this medication called Duavee. But she wanted to check my estrogen levels and also consult with my breast care team. So I had my estrogen levels checked. And it was actually really quite low for someone my age and so all the providers came together and talked about it and they were in agreement that Duavee would be a good medication.
[00:12:17] And fortunately, I work here at Komen and have access to a lot of information, so I you know, use those resources and decided to go on that medication. So I’ve been on it for about a year now. I haven’t really had a whole lot of issues on it or side effects, which is great. So the plan is for me to be on it from what I understand long term.
[00:12:38] Okay. And so I’ll continue with that doctor and then continue with my screenings every six months.
[00:12:46] Adam Walker: Alright, well that’s good. Now I assume. You know I’m going to, I’m going to backtrack for a minute. I assume when you got the radiation as a teenager, of course you’re not thinking about any long-term side effects of that, and you’re thinking really more about getting back to school and that sort of thing.
[00:13:03] And so how old were you when you learned that radiation might have caused, you know, potential for other issues like breast cancer and other things like that?
[00:13:12] Amy Colver: Yeah, so my oncologist was very upfront with me that having radiation would mean that I would be at high risk of breast cancer and I would need ongoing screening.
[00:13:26] But I think hearing that at 19. It’s very different from living it now. So, you know, as I had mentioned, he gave me the option of radiation versus monitoring and you know, I really wanted to wrap it up. So I chose the radiation. I don’t think that I would do anything differently. But I’m now appreciating what it actually means to go in every six months and be screened for breast cancer.
[00:13:57] And I think it’s kind of where the emotional part comes in of you know, overall I’m okay emotionally, I’ve had many screening tests that have come back negative. I’ve been called back twice for a follow-up test and just like any other person in that situation, I’m scared. I’m nervous about what’s going to come from that test.
[00:14:22] And every time I go in for a screening test, I’m scared and I’m nervous. And I would say about 10, 15 years ago, I went through a period where like I didn’t have screening. Like, I was just like, I don’t want to deal with this. Like, I want to start my career. I don’t want this to be a part of my life, but I’ve always been an oncology social worker and so working with patients who are actually diagnosed has kind of kept my feet on the ground and I’ve, you know, been able to be on track.
[00:14:51] But you know, I really look at it in a couple different ways. You know, overall I’m okay but now I have a son, so this is even more important to me. You know, he’s top of mind for me. And so if I do receive a breast cancer diagnosis in the future. I know that I’m getting the care that I need. I know I’m screened every six months, so hopefully it’s caught early.
[00:15:17] I also look at it as it’s something that I can do for my health. So there’s so much in life that is out of our control and I don’t really have a whole lot of control over my risk, but you know, getting screened and following up with the care that’s recommended for me is something that I can do. So I’m not saying it’s easy, you know, like I live in that fear.
[00:15:39] I’ve had the other shoe drop, my body has developed cancer one time. You know, like I live in fear that’s going to happen again. But what I’ve really been working on a lot lately for myself and my own therapy is how can I hold more than one thing at once? You know, how can I be grateful that I have these opportunities to take care of myself and that I have a great medical team.
[00:16:05] I also grieve that this is even a part of my life, and then I also, you know, accept it and I’m also scared and nervous, and so I’m learning, you know, to live more in that space versus it being so black and white.
[00:16:18] Adam Walker: Yeah. So you mentioned, you know, your social work and so you know, you’re a licensed clinical social worker.
[00:16:26] In doing that you support patients that are facing, you know, worries and stress and cancer. Are you able to sort of apply some of your advising to yourself? Are you able to kind of be clearheaded or when it’s kind of your own experience is it harder for you to do that?
[00:16:44] Amy Colver: Yeah, that’s such a good question.
[00:16:47] I would say for the most part I stay pretty clearheaded. You know, I’ve been at this for a while. I have, you know, I’m human, so I do get triggered, but I have over the years had very good personal and professional support. So I have a very good mentor. I have lovely colleagues, you know, that help me to process things, feel what I’m feeling, but not let it get so out of control. So I’ll give you an example. A few years ago I was living in Denver before I lived in Maine. And I again met a primary care. She helped me get my screenings established, and I went in for a mammogram, had the test, and then I was sitting in a waiting room,
[00:17:41] waiting to leave. And there was other women around me and you know, the techs and the radiologists were coming out and saying the other women could leave, but I’m still sitting there, so I’m starting to panic and get worried. And so a radiologist comes out and they pull me aside in another room and they said
[00:17:58] you know, there’s an abnormal finding. We need you to come back for a diagnostic test. This is one of the callbacks that I had, and so I’m, you know, trying to keep it together. I schedule my appointment, I, you know, keep it moving and I get in the car and the financial counselor from the imaging center calls me and she says, you know.
[00:18:18] You’re young, you’re not really of the screening age. I don’t know if your insurance is going to cover this, your mammogram or a diagnostic mammogram. I’m just telling you, you know, and she’s going over the costs with me and I kind of rushed her off the phone. Like I didn’t want to hear it. It was bad timing.
[00:18:35] And you know, just told her, okay, you know, but ultimately I have to do what I need to do for my health. And so I got off the phone with her and I called my husband and I just was beside myself like, you know they found something, I have to go back in and just was crying that, you know, this is even a part of my life that I have to go through this and
[00:18:57] again, I just processed the emotions that I needed to process, but then the logical part of me said, okay, you have the skills that you need to cope with this. You’re an oncology social worker. You navigate insurance issues all the time with your patients. Like you’ll get through this. And so, you know, I did and things ended up okay, but
[00:19:18] if I wouldn’t have had that support or you know, even just you know, professionally when I would be triggered by certain things to be able to talk about that in supervision. You know, I might not be where I am today. And time is also a good healer. I’m 20 years away from it. Right. I have space from it versus it being so fresh.
[00:19:39] Adam Walker: Yeah. Space makes worlds a world of difference.
[00:19:42] Amy Colver: Yeah.
[00:19:43] Adam Walker: Talk to me a little bit about the empowerment that comes from knowing your risk, and why is it important for women to be educated about their bodies in this way?
[00:19:52] Amy Colver: Yeah, absolutely. So for me, knowledge is really empowering. It’s that simple. So knowing what my risk is and knowing what my care plan is gives me a lot of peace.
[00:20:06] So I know that I have a plan, I know that I have a great team that takes care of me, and so that makes me feel more powered and in control. I know there’s other people out there that feel that way and they’re all about the information and being empowered. But I also want to acknowledge that, you know, there is a very real piece to knowing your risk of breast cancer.
[00:20:30] And if you’re at higher risk, it’s scary. It can be overwhelming, and there’s fear and anxiety that can come with that. But like I talked about, you know, there may be some things that you can’t change, but there are things that you can do. So getting information at a space, you know, or at a rate that feels comfortable for you, and, you know, finding out what you think that you would want to know.
[00:20:56] And you know, we have a ton of information on komen.org that I can talk about. And so getting that information, whether you have it or not, the most important thing that you can do is talk with your healthcare provider about it. And so, again, that’s another thing that I think people can do once they know about their risk, then they have more information and then they can make decisions in collaboration with their healthcare provider about their health and, you know, what they want to do as far as screening and what their risk means for them.
[00:21:28] And so you know, I think that is really empowering.
[00:21:33] Adam Walker: Yeah. And critically important.
[00:21:36] Amy, you’re, you’ve got a great story. I appreciate you taking the time to share it with us. I’m curious, do you have any final advice that you’d like to share with our listeners today?
[00:21:46] Amy Colver: I do. I have a couple things I’ll put in a plug for Komen at the end.
[00:21:49] Adam Walker: All right. All right. I like it.
[00:21:51] Amy Colver: But the first thing that I thought of is really my advice would be to advocate for yourself. Like I was talking about after I had my son, like I knew something was off in my body. I just couldn’t pinpoint it. But if I wouldn’t have said anything. I may not be where I am today, feeling better.
[00:22:15] And also people may need to advocate for themselves to even learn about their risk or get the screening that they need to. So I think that’s really important. The other advice I would give both on a personal and professional level is, you know, if you’re at high risk of breast cancer or even if you’re diagnosed with it.
[00:22:35] And you’re struggling with it emotionally either thing, you know, as many people do. That’s very common. Don’t be afraid to ask for help. You know, there’s people out there, oncology, social workers, psychologists, counselors who want to be able to help. And just even having a space to process my hope would be as a
[00:22:56] somebody who’s needed to process throughout their life, as well as being a professional that works in the field, I hope to remove some of the negative stigma or, you know, perceptions that people may have around getting psychological and emotional help. These are big issues to deal with and so I think it’s okay to ask for the help.
[00:23:17] And then as far as my plug for Komen we do have a lot of information on our site about risk. So if people come to komen.org and go to the about breast cancer area of our site, there’s a section there called risk factors. And within that section there is a lot of information about risk assessment tools, risk factors genetic counseling and testing inherited gene mutations, just so many different things.
[00:23:48] And so if that’s, an area if people are interested in getting more information. That’s one way I, there’s page in that section with questions to ask your healthcare provider. And there’s a family health history tool that can help people gather information. And so if you’re not really sure where to start, the questions page is really great and you can get the information you need from the site and eventually take that all forward to your healthcare provider.
[00:24:18] And then my other plug for Komen is if you need help and support, please call our Patient Care center. So the number for our helpline is 8 7 7 Go Komen, which is 8 7 7 4 6 5 6 6 3 6. Or you can email helpline@komen.org.
[00:24:37] Adam Walker: Amy. Thank you for sharing your story, and more importantly, thank you for the amazing work that you do.
[00:24:43] It’s so critically important, and I just I love hearing about it. And thanks for joining us on the show today.
[00:24:50] Amy Colver: Yeah. Thank you so much for having me.
[00:24:58] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit real pink.Komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter at AJ Walker or on my blog adam j walker.com.