High Risk for Breast Cancer? Create a Plan!

[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.

Everyone is at risk of breast cancer, and some of us are at a higher risk than others. Learning about your breast cancer risk can empower you to make important breast care decisions to take charge of your health. Today’s guest lost her mother to breast cancer 20 years before she had her first mammogram.  The results of that first mammogram revealed something suspicious, which was a huge wake-up call for her and caused her to speak with her doctors about preventative options.   Here today to share what she learned and the steps that she is taking to prevent the development of breast cancer is Colleen Boraca.  Colleen, welcome to the show!

[00:00:49] Colleen Boraca: Thank you. Thank you for having me.

[00:00:51] Adam Walker: Well, I’m very excited to talk to you and get your perspective on this. It’s so important. So I understand your first mammogram was a wake up call and cause you to make some significant health decisions. Can you tell us what that screening process was like for you and what you learned?

[00:01:08] Colleen Boraca: Sure. So I had my first mammogram when I was about 40. And I went to a local clinic to have it done and it was really kind of emotional because as you mentioned, it was, you know, the disease that killed my mother. So it wasn’t just a regular health screening. And after I had the mammogram, I got a voicemail from the clinic a day later saying they needed to do further imaging, but they didn’t say why.

And you know, you can’t really leave that in a voicemail for somebody who lost their parent to this disease. And I actually really didn’t get an answer for about a week, whether or not it was because they needed further, they had seen something suspicious, or because their imaging wasn’t clear or whatever.

But long story.. Very long story short, I had after that follow up imaging, they wanted an ultrasound done because they did find a mass. And after the ultrasound, they suggested a needle biopsy. And after I had that done, the needle biopsy showed that I have two conditions that are precancerous. One of them’s called LCIS, it’s a lobular, I had to look this up.

Carcinoma In-situ. And then the other one is called ADH, atypical ductal hyperplasia. And so those two conditions put me at a heightened risk of developing breast cancer. So I, the radiologist suggested I start, you know, have it surgically removed. And at that point I kind of realized it’s time for me to maybe look for some other places to go. And so I live in Chicago, there are a lot of really amazing cancer centers here. And so I reached out to seven people I know who have all had experience with breast cancer. And out of the seven, five of them came back with the same name of what surgeon I should go to. And so to me that was a sign I got in with that surgeon. She did the surgery, removed it. But then at that point in our post-surgical meeting said, there’s some things you can do for prevention. And so that’s kind of what began this all in motion. So the main thing I learned is that you can’t leave voicemails for people who, this is a pretty emotional thing.

[00:03:07] Adam Walker: Yeah. Yeah. I think getting a voicemail like that would be Incredibly stress inducing. I can. I can certainly only imagine. So then after all that, your focus became prevention. Walk us through what that’s like. What does that entail? Who did you meet with? What was the plan and how are you feeling about that plan?

[00:03:28] Colleen Boraca: So the surgeon told me about a group of people who take a certain medication called Tamoxifen, which I had heard about because my mother took it. And most people take it after they’ve gone through chemotherapy and radiation to try to prevent a recurrence of breast cancer. But there’s a certain subgroup of people who take it. To just prevent it you know, proactively. But she said, in order to find out what my actual risk was she suggested I do genetic testing, so like BRCA testing, which up until this point I hadn’t really, I’ve been a little hesitant to do, but I did it. And then I also, they suggested that I order my mother’s medical records because one doctor had asked me like, do you know what type of breast cancer your mother had? And I. The type that kills me. I don’t know, like what are you talk like I was 18 when she was diagnosed, so I didn’t know that there were different types of tumors and things like that. So I ordered her records as well which was a strangely, very emotional thing to receive in the mail. Like just, you know, opening up records and looking at things like referral to hospice or things like that. So that was something that I hadn’t quite gotten myself prepared for. But after getting all of that information, then the surgeon sat down and said you’re a good candidate for Tamoxifen. And that I met with an oncologist who is just one of the most compassionate people I know, and she said, if you take this for five years, you will reduce your risk of getting it by 50%. And to me, That was a no brainer. I mean, certainly there’s a lot that comes with it, but it really was you know, began to put the wheels in motion. And I see this oncologist multiple times a year. She, I monitored very closely on this medication, but it, it really, she didn’t have to sell me too much on it.

[00:05:19] Adam Walker: All right, so, so you’re on tamoxifen. Obviously a lot of medications do have side effects. Do you have any side effects? If so, like what are they and are there things that you’ve done to help deal with.

[00:05:32] Colleen Boraca: Yes. So I’ve had, and people who take tamoxifen have tons of side effects. Like I said, most people who take it are coming off chemotherapy and radiation, so they’re already, you know, have had some rough side effects with all of those. I didn’t. But the two types of side effects I’ve had are, first of all mood side effects. So Tamoxifen has a huge link between depressive symptoms. And so I, I find that if I don’t exercise every day or if I don’t watch my diet and, you know, sugar intake I have a pretty depressed mood or get very irritable and things like that. So, fortunately my husband and my children have been pretty, pretty helpful in understanding about that. But my bigger issue was it has a huge link to joint stiffness. And so one day it was two actually I can tell you the exact day, but it was right about a month into the COVID lockdown. One day, like in the morning, everything was fine, and by the night I felt like I was walking in mud, like I could barely move my legs, and I didn’t know what that was from, and so I was freaking out thinking, I had MS, or I was dying, or I had no idea what was happening. And it was a time where you couldn’t just call up your doctor and be like, Hey, can I come in and see you? I finally figured out what it was and it’s a fairly common side effect. A lot of people I’m on a Facebook group with women who take Tamoxifen and day after day you’ll see people say, you know, does anyone have hip pain? Does anyone have joint pain, knee pain, whatever it is. So, the oncologist, Who I see prescribed magnesium and also increased vitamin D intake. And I also, she also suggests that I drink an ounce of tonic water every night. Like apparently that relaxes your joints without gin. But and then, but what’s really helped me is I started seeing a physical therapist. His name is Lance and he is been really helpful in not only like helping understand like why certain joints are, are really rigid or things, but also helping build up muscle. So there’s a lot you can do for it. It’s not the most pleasant, but in the grand scheme of things, the side effects that I’ve experienced are pretty, pretty nominal compared to what other people do.

[00:07:50] Adam Walker: It sounds like you’ve got some pretty practical ways to deal with those side effects. I mean, like you mentioned, exercising on a very regular basis, vitamin D, so maybe you’re getting outside and exercising on a regular basis and, know, reducing sugar intake. Like those are all, I think, probably good things for you to do, regardless anyway. So, you know, maybe it’s a little bit of a win-win as far as that goes. So, okay. Okay. So, what are some of the things you’ve learned by advocating for yourself through this process?

[00:08:20] Colleen Boraca: Well, I’ve learned that you, first of all, you have to be patient. That getting in to see a lot of these people takes time, like getting in to see the breast surgeon. I was able to get in to see her fairly quickly, but the oncologist that I see is a pretty popular lady, so it took a long time to get in to see her. But in order, then you have to then, before we could figure out what the plan was, you needed, I needed to get genetic testing. The geneticists take a while to get into. So it’s the type of thing that you really, if you want to have a comprehensive plan, you need to be patient with it. You know, and what my plan looks like is different, and I do not have the BRCA gene, but I know people who do their plan looks different than mine. So you really want to make sure, you need to talk to all these people. To really make sure that you have the best one for you. The other thing I learned is that it’s really important to take people with you to appointments. Now, I mean now that, that covid is, things are opening up a little bit more for a while. You can, it could only be you, but it’s, it was really helpful especially in the early days for me to have people who had just to have another set of ears on what’s being said. You know, when you’re hearing these things, it’s very Brings me right back to when I was 18 and I was hearing things from my mother, you know? So it’s like, it’s very much a mind game. And so having another set of years from people saying like, no, this is actually what the surgeon said, not what you thought she said, but I took, one of my friends is a breast cancer survivor, and I took her with me because she knows what questions to ask that I don’t, and so I think that’s just really helpful. And we’ve turned my multiple oncology visits a year now have turned into fun shopping trips because it’s in downtown Chicago. So I take my friends and we have a good time with it. So I think that’s important because it’s a very it’s a very humbling place to spend any amount of time when you’re in. That waiting room and stuff, so having other people there is really helpful. I also found that it’s really helpful to talk about your experiences, like when this was all happening, I was very close minded or like just very shut down at first. But I started talking about it one day to a friend of mine from work and I didn’t realize that she had had the exact same surgery. By the exact same surgeon a year before me. And so she was able to say, Hey, when you go in, this is what’s going to happen. You know, this part’s going to be challenging, this part’s not. And so she and I have really, you know, bonded over that experience and she really was helpful and continues to be so, and I think the more you talk about it, the more you can help other people. And it’s pretty tough to find somebody on earth that hasn’t been impacted by breast cancer on some level. So, yeah. No, that’s helpful.

[00:10:51] Adam Walker: I think you’re totally right. I think there, there’s a lot of wisdom. And being willing to share your own experience and recognize that other people have probably similar experiences that you can learn from. I mean, that’s why we’re interviewing you today, right? You’re hopefully people can learn from your own experience and gain wisdom and hopefully some encouragement from that. So, so I, I think I already know the answer to this, but I’m going to ask because I feel like I, I want to hear it verbalized. How do you feel about your decision to create and stick with this prevention plan?

[00:11:23] Colleen Boraca: I think a couple things like, first of all, I just feel really relieved. Like I feel relieved that there is something that can be done that I, I don’t know if anyone ever spoke to my mother about prevention planning because I never got to ask her, but I, I’m just really grateful that it could reduce my risk by 50%. I mean, I know it’s not a hundred percent, but that’s a big deal. Like that’s a huge difference. I also feel really. Empowered, like, I feel like it’s a gift to my children. I always tell them that me taking, this is the biggest gift I’ll ever give to them in the hopes that they don’t have to go through what I did watching, you know, watching what my mom went through. But most of all, I just feel really grateful. I’m grateful I have. Doctors who are willing to be this proactive with me. I’m grateful I have insurance that’s happy to cover all of, well, I don’t know if they’re happy, but they do cover it. But I just have a tremendous amount of gratitude that I go to a clinic that’s very responsive, that is on top of stuff, and I just feel like I’m in good hands.

[00:12:24] Adam Walker: That’s fantastic. Sounds like you’re in good hands. So why are we talking about this? Why is it important for you to share this?

[00:12:31] Colleen Boraca: Well, I think for a couple reasons. I mean, first of all, even if you didn’t care about like human suffering and people, you know, losing loved ones and things I have a background in health law and prevention just makes sense. Like it makes sense for my insurance company to want to pay for Tamoxifen and occasional monitoring situations and appointments and physical therapy and stuff versus paying for chemotherapy, radiation, surgeries, you know, lots of stuff. So just even if you didn’t, putting aside everything that actually makes means the most to me, but just from a financial standpoint, it makes sense. Like we should be doing more preventative stuff in our society. Just to try to kind of help out the United States healthcare system. But obviously the bigger issue for me is, you know, I promised my mom that I would never stop fighting for a world without breast cancer. And I’m not a statistics person. I’m not really good at math, but it would seem to me that if everybody who was high risk took this and reduced it 50%, you’re reducing a whole lot of people who aren’t going to be having this. And so, you know, it’s, that’s a lot of families. That’s a lot of people who don’t have to, who don’t have to lose loved ones. It’s a lot of people who don’t have to disrupt their lives, and so I don’t think a lot of people know about it. I certainly didn’t, and I. I thought I was pretty well verse in all of this stuff. So I think, you know, the more the word can get out about it, the better we’ll all be.

[00:13:59] Adam Walker: I mean, just to confess, so I’ve been hosting this podcast for I think two plus years and this is the first that I’ve heard about preventative… like, so I think there’s a lot of people that don’t know about, I’ve been very deep into, to, you know, breast cancer for a long time and did not know. And so, I really, I mean, really appreciate you coming on and talking about this because it, it is so, so important. Last question. Do you have any final advice that you’d like to share with our listeners?

[00:14:27] Colleen Boraca: I think the, the two things I would say are, first of all, own your emotions. Like if you are going through this process having lost a loved one to breast cancer, it’s okay to be a hot mess. It’s okay to be in a different position than somebody who has no background with the illness. Every single person that I deal with ranging from the radiologist to the mammogram text to the oncologist, they all are aware that I have baggage here that this is something that’s very emotional to me, that really impacted my life, and I think that’s okay. You know, some of them, they kind of freak out a little bit and they aren’t necessarily the most like compassionate, but most of them are, and most of them understand that it’s hard. And so if you do have history with it, It’s okay to tell them that and it’s okay to not be okay when you’re going through all of this stuff. And I think the other thing that I would say is just to be positive that breast cancer today is not the same illness as it was or disease when my mother had it because of organizations like Susan G. Komen. Who works so hard to fund research and make progress in the disease. So it’s very easy to automatically assume that if you know, I have this outcome, it’s going to be just like what happened 20 years ago. But that’s not the case. And so I think it’s important to kind of keep that in mind as well. Absolutely.

[00:15:46] Adam Walker: Absolutely. So well said. So well said. Well, this has been very enlightening, very educational and, and, and inspirational as well. So Colleen, thank you for joining us on the show today.

[00:15:58] Colleen Boraca: Thank you so much for having me. I’m happy to be here.

[00:16:06] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. 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 @AJWalker or on my blog, AdamJWalker.com.