[00:00:00] Adam Walker: The Real Pink Podcast is supported by Wacoal. Wacoal supports Komen through Fit for the Cure and other initiatives, which have raised over $6 million to date. Wacoal will donate $5 to Susan G. Komen for every person who receives a complimentary bra fitting and purchases a regular price Wacoal or b.tempt’d bra at a Fit for the Cure event. Wacoal will also donate $5 to Komen for every person who completes the steps to digitally size themselves with mybraFit. Are you wearing the right size bra? Find out! Visit fitforthecure.com to learn more.
[00:00:50] 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.
[00:01:03] This is Real Talk, a new podcast series where we’re going to break down the stigmas and feelings of embarrassment and talk openly and honestly about just how difficult breast cancer can be – from diagnosis, to treatment, to living with metastatic breast cancer, to life after treatment ends. A breast cancer diagnosis can be life altering for women and men at any age. But for younger women who want to have children, a diagnosis can immediately change their life plans.
[00:01:33] Some treatments can prevent a woman from carrying a child; some can make it more difficult to become pregnant; and some can require quick decisions about freezing eggs before treatment begins. And for women who are diagnosed with breast cancer while pregnant, tough decisions must be made to ensure the health and safety of baby and mom, or to understand the possible impact treatment can have to the baby.
[00:01:57] None of these decisions or situations are easy, but fertility is an important consideration for women who are diagnosed with breast cancer at a younger age. Today, I’m honored to welcome Dr. Ann Partridge, a world-renowned oncologist who focuses on treating breast cancer in young women, and Lindsay McGloughlin, a breast cancer survivor who tried but did not become pregnant after finishing active treatment.
[00:02:22] Dr. Partridge and Lindsay welcome to the show. Lindsay, I’d like to start by asking you to share your story and help listeners understand what you’ve been through.
[00:02:31] Lindsay McGloughlin: Absolutely. Thank you so much for having me on. My name’s Lindsay McGloughlin. I’m 38 years old. My journey with breast cancer starts when I was little. My- when I was in eighth grade, my mom was diagnosed with breast cancer. She’s alive and well today. So it was something that was in my family from a young age. Fast forward to when I was 28, I found a lump in the shower and I’m only 28, but because of my family history I watched it a little more than maybe any other 28 year old would, and it didn’t go away.
[00:03:06] So I went to my doctor and they said, nobody under 30 gets breast cancer. But because your mom had it, we’ll do the next steps. And so we did. And I was diagnosed at 28 with invasive ductal carcinoma. I chose to have a bilateral mastectomy with reconstruction. And my treatment at that point after my surgery really just included being on Tamoxifen.
[00:03:32] I, at the time, was married and I had a little boy who was 18 months old. He is and was and always will be my whole world. And I had one of those moments when I got that phone call where I literally saw his whole life flash before my eyes, like something out of a movie. And he was my rock through everything.
[00:03:55] I did very well after my surgery and on Tamoxifen and a few years after all that, we decided, my husband and I, that we were going to try to have another baby. I was very much, you know, this is my choice whether I have kids or not, not cancer’s choice. Obviously, incredibly thankful I already had a child because I know I’d heard of the struggles that come with pregnancy after breast cancer.
[00:04:21] So I spoke to Dr. Partridge and she had what’s known as the POSITIVE trial, which we will chat about, and she said I was a good candidate for it. So basically for me, I stopped all my meds. I was obviously still followed and followed a little bit more with this trial, but I was clear after about six months to start trying to have a baby.
[00:04:42] We were not successful, for whatever reason may be. And throughout this time that I was off of my meds, I found another lump that was oddly very similar, complete deja vu moment of finding a lump. And I followed up, and it was a local recurrence. So my breast cancer was back. I was 33. So, it was about five years out.
[00:05:06] And local recurrence just means that it’s in the same spot, similar type, it’s not a new cancer, and it’s not it hadn’t spread. So it wasn’t metastatic. So in a bad case, it’s the best case scenario, I guess you could say? So because it was my second time around immediate treatment, having kids was out of the question.
[00:05:26] And I went on to have more surgeries. I went through chemo and radiation and the whole nine yards. And I am at this current moment, almost five years out from that point. So this has kind of been like the last 10 years of my life dealing with this. It’s been a wild ride. I’m now divorced, which is a blessing in disguise through all of this. You know, maybe not having a child in there was meant for a reason. And my son is now 11, which is just crazy. But it’s great. I still see Dr. Partridge and she’s amazing. And I can’t wait for you guys to hear from her.
[00:06:09] Dr. Ann Partridge: So Lindsay, as a young woman diagnosed with breast cancer, you were dealing with a lot of issues when I first met you, right? Because new to diagnosis and… tell me about that time. What were you thinking?
[00:06:23] Lindsay McGloughlin: It was very overwhelming for a number of reasons. As you said, I was young, I didn’t know the community that I know now. I felt like I was very alone. I didn’t know many young women who had breast cancer. I didn’t know many young moms.
[00:06:42] I didn’t know anybody who had a child after breast cancer. I was just kind of, you know, figuring it out as I went. And I had had an another oncologist originally and when everything was happening and I met you, I was opened up to this world of I’m not alone. You know, there’s lots of young women out here, unfortunately.
[00:07:05] But I had a baby, and I had a job, and a husband, and a home and, you know, all the stressors of normal life plus breast cancer and dealing with, you know, being in menopause at age 28 and all that comes with it. And I had a lot going on. So when I met you, we had talked about, you know, the future. And my previous oncologist never spoke about that with me.
[00:07:28] So, you know, plans of: am I going to have another baby? Am I done having kids? What are my options even? All very, very important stuff to talk to a young female facing any cancer diagnosis. So as nice as it was to hear all that, it’s also a lot of information, a lot of things to think about that most women don’t have to really, you know, play on the rest of their life at a certain age, you know?
[00:07:55] Dr. Ann Partridge: Yeah. That’s heavy. A lot to unpack there. I want to pick up on the kind of being in the waiting room and starting to see some young women, which was good at our place, and I know other big centers and places where they focus. And, you know, tell me what helped you with that? Did you reach out to the women yourselves? Or how did you use that to help you in your journey?
[00:08:17] Lindsay McGloughlin: Yeah, so my second diagnosis when I was coming in for chemo, I definitely, I noticed, you know, I wasn’t alone. There was lots of other, I mean, women of all ages. But there was women my age, and there’s actually a young woman that we had chemo the same time, the same day, you know, every Monday, and we would just stare at each other. You know, a little like, Hey, like, I see you, you see me, you know, we’re here together.
[00:08:41] Probably like halfway in, we finally said hello, And we were the exact same age. She’s a police officer. I’m a firefighter. We just connected. We’re still friends now and you know, we’ve talked every day almost since. And just having, even if I never spoke to her again, just the comfort of knowing like, I’m not alone and nobody is alone in this journey.
[00:09:03] And anyone I talk to, I reach out, and I try to say, you know what? You know, her and I had different types of breast cancer, but she met other people at her type and I met other people at my type and there’s always somebody to connect with and just having that was so incredibly comforting.
[00:09:19] Dr. Ann Partridge: Oh, that’s great. And to get that kind of support. And when it comes to having babies after breast cancer, you had to deal with that, obviously, and the desire to potentially have another child. Did you deal with that right at diagnosis? And how did you think about that?
[00:09:39] Lindsay McGloughlin: So when I was first diagnosed and my son was 18 months, you know, as I was young and naive before getting married, I was like, oh, I’m going to be married and have two kids and, you know, they’ll be two years apart.
[00:09:52] And, you know, you write this perfect story for yourself, and I have learned through all this that nobody can predict their future and write a perfect story, and we just have to go with the flow and ride the wave as it comes. And after my first diagnosis, having another child was not on my radar. My son was 18 months old.
[00:10:10] I was like, Oh, we’ll push it back a little bit. And then as I’m learning about breast cancer and realizing that I’m being put into menopause and… wait a second may, I might not be able to have kids. And that was a really big pill to swallow. As I had said to Adam, if I’m not going to have any more kids, I want this to be my choice, not cancer’s choice.
[00:10:32] And that was also another hard pill to swallow that like, I’m losing control. And when I took a step back and realized, you know, I’m not losing control. I hate that cliche saying, you know, you can’t control what happens to you, but you can control how you react to it. But it’s really, it’s very true and I am so thankful of the son that I have.
[00:10:53] And then when I met you and realized, you know, there are other options it was eye opening and wonderful. And the fact that, you know what? This- from the get-go, this might not work for one of 9,000 reasons, but I have an option. And having options in a cancer journey is huge.
[00:11:12] Dr. Ann Partridge: Yeah. A lot of people do speak to me about the control issue, and they don’t want cancer to take their choices away. You can decide not to do things and many people do indeed do that, meaning decide not to have babies for different reasons.
[00:11:27] So you’re getting treated, I’m putting you into menopause now. It wasn’t permanent menopause. And tell me about, you know, the desire and decision that led you to participate in the POSITIVE trial. What were you thinking and how did you approach that?
[00:11:47] Lindsay McGloughlin: So, being in menopause is awful. I don’t- I can’t- other than not having a regular menstrual cycle, I don’t know any great thing about menopause. So there’s that. So if you’re listening to this, I get it. It’s awful.
[00:12:01] Dr. Ann Partridge: It’s not terrible for everybody, by the way. Some people have a harder time than others.
[00:12:05] Lindsay McGloughlin: That is very true. And I should be thankful because I know that there’s other symptoms and whatnot that I never experienced, so I should not be so negative. It’s true. Some people have no symptoms whatsoever and I’m very jealous of them. But it’s manageable for sure.
[00:12:23] So it was kind of a couple things with the POSITIVE study. One, I wanted another child for many reasons, you know, I want my son to be a big brother, I want to grow my family, I also was curious about taking a break from my treatment, from my meds. And it was kind of, you know, I can cover all of those at the same.
[00:12:45] And you were very reassuring and very open and honest about what this consists of, and how everything’s going to go, and how I am followed, and what is done, you know, additional blood work, and whatnot, and follow up, and all that good stuff. So I felt very well informed of what I was getting myself into and just being able to open the door of possibly having another child was absolutely worth it for me.
[00:13:10] Dr. Ann Partridge: All right, so then you went on and… You want to just talk a little bit about what happened and the process for you?
[00:13:19] Lindsay McGloughlin: Yeah. So, I stopped my meds and it was about like a six month washout, so to say, you know, to just get everything out of your system. And then we were free to start trying having kids. At the time, I wasn’t in the best relationship with my husband. You know, the more you try, the greater your results are, so to say. Your potential is. And we didn’t try very often. It was it- I don’t want to say that caused issues, but it was another stressor in our life you know. Of because there’s, there is sort of a timeline, right?
[00:13:55] Dr. Ann Partridge: Especially we wanted to get you back on the meds.
[00:13:58] Lindsay McGloughlin: Exactly. So it added pressure, and in an already, you know, hectic marriage it was hard. I, yes, I felt different coming off my meds. My desire, my sexual desire was higher, which was great for trying to have a child. But it was a little tumultuous in my marriage.
[00:14:18] So, you know, as I said before, maybe it was a blessing in disguise that I didn’t get pregnant. But while I was off my meds, I found another lump and I ended up having a local recurrence before the end of what would’ve been the end of the POSITIVE trial.
[00:14:33] Dr. Ann Partridge: Right, and knock on wood. You dealt with that. You’re doing fabulous. Do you look back and do you have regrets about decisions made along the way? Or, you know, do you say, oh, I never should have come off? Or-where’s your psyche on that one?
[00:14:49] Lindsay McGloughlin: I mean, I definitely think that some days I think one thing and another day I’ll think something totally different. I’m really happy that I tried because I feel like if I never tried I never gave myself the option to have more kids that, again, I feel like I could blame cancer for taking control. I learned a lot about myself. I mean, my second battle with breast cancer gave me the strength to get divorced. You know, it taught me exactly how strong I was.
[00:15:20] The first time around I didn’t do chemo and radiation and that is a mother. You know, that, that stuff requires a lot of strength and a lot of resilience and it taught me a lot about myself. And I’m in a much happier place now. And, you know, I feel like through the storm, you know, comes the rainbow and I learned a lot and I’m- I would never, I don’t want to live in the past.
[00:15:45] And that’s something that cancer has taught me. I can’t change what happened. Did it happen because I came off my meds? Maybe. I don’t know. When I had- when my cancer came back, one of the biggest things that people ask me is, how? Why? How did this happen? You had a bilateral mastectomy. How did it come back?
[00:16:02] You were on meds, you did this, you did that. And I’m like, I don’t know. But I’m just going to take care of it and move forward. And I can’t constantly ask why? Why? Why? Because I’ll just drive myself crazy. So I’m proud of myself for being part of a trial. I’m honored that I can help other women in the future by doing a study or a trial. That I can aid in Dana Farber learning more about young women and breast cancer because we’re still learning so much. And if I can find all those positives through the POSITIVE trial. Then I’m happy.
[00:16:36] Dr. Ann Partridge: Lindsay, you’re an amazing person, and such grace, and such generosity that you’re approaching this whole experience with. And there’s a term for what you’re describing: post-traumatic growth.
[00:16:54] Lindsay McGloughlin: I’ve never heard that, but I, that speaks to me.
[00:16:56] Dr. Ann Partridge: Yeah. Yeah. You know, this is, no, nobody ever wishes this on anybody, what you’ve been through. Absolutely not. But to be able to kind of, you know, manage it and emerge with the, you know, the ‘vibe’ that you’ve got as my kids like to say. And to be able to keep that, you know, optimistic view and you- and fantastic, and you’re doing so well. Which is great.
[00:17:16] Lindsay McGloughlin: Yeah, I mean, don’t get me wrong, there’s really dark days in there that I had to struggle through, and there was a lot of tears and a lot of feeling awful mentally and physically. Any cancer journey, battle, whatever you want to call it, is not easy. But when you can find the support of a community like Dana Farber or Susan G. Komen, or whomever it may be, you know, another girl in the waiting room. You know, and you realize that you do have control through all of this and you can make choices that you can come out on top.
[00:17:49] Dr. Ann Partridge: All right. I just thought of another podcast you have to do or an article for the Dana Farmer, which is ‘Another girl in the waiting room.’ Come on. You just got the, this is, that’s what you gotta title this podcast.
[00:18:02] Lindsay McGloughlin: [Laughs] I have awesome stories about people that I met in the waiting room. There is a DJ from a local radio station who was going through cancer. Who, so I knew of her, and she dressed up as Wonder Woman every time she-
[00:18:17] Dr. Ann Partridge: I know exactly who that is. I know the co,p right? Do I know her?
[00:18:21] Lindsay McGloughlin: I think you do. Yeah. I think so. And it’s just, it’s wild. And then she would come back and she had like little gifts for everybody in the waiting room when she would come back for her follow up when she was done with chemo.
[00:18:34] And she’d be like, I know how hard it is. Here’s a little motivational message. Here’s a coloring book. Here’s a little pin. Like just, through hard times, like you see the best of people and there’s fantastic people out there. You just have to open your eyes and welcome them in.
[00:18:49] Dr. Ann Partridge: Yeah, and you, I think you shine a light on whether it’s a person trying to have a baby or just muddle through all of it. The importance of the support that you can get from your community or from your team, or from the waiting room.
[00:19:02] Lindsay McGloughlin: Yep, absolutely. And social media has increased that also. I am in a number of groups and it’s hard because, you know, you’re not connecting with a face and a real person. But, you can find those people now, you know, you can find somebody who has this specific type of cancer, who’s this age, who’s looking to have a baby this many years after this treatment. And there’s somebody out there and you can find them and you can connect with them. And if not, your oncologist or somebody probably knows someone who’s just like you.
[00:19:32] Dr. Ann Partridge: Lindsay, you’re just terrific. I so appreciate you sharing your story with us, and I so appreciate all that you did to participate in the POSITIVE trial in particular because we know that you could have gone and done it on your own. And the fact that you were willing to participate in research that many, many, many women worldwide will use to help inform the decisions that you didn’t have that kind of data to support.
[00:20:06] Lindsay McGloughlin: Thank you for giving options to me and opening my eyes to things that I didn’t know were possible in my life and for honestly helping me get to where I am today.
[00:20:16] Adam Walker: So, so, Dr. Partridge, thanks for joining us here. I would love to hear more about the POSITIVE Trial. Would love to know about what was learned? What are the implications for women who are diagnosed young in just all the details?
[00:20:29] Dr. Ann Partridge: Sure, the POSITIVE trial was a study that was designed by a relatively small group of doctors and researchers from all around the world who were dealing with the clinical dilemma with their patients who came to us, had a new diagnosis of breast cancer, or they’d been living with a diagnosis of breast cancer, and they needed to take hormonal therapy to treat their breast cancer, which is a mainstay of treatment of patients with hormone sensitive breast cancer, and they weren’t done with having their families.
[00:21:06] These were young women who, some of them were diagnosed even in the IVF suite, waiting to try to, you know, get pregnant. Seeing their OB to say everything clear? And then they get a breast exam. And so these women wanted a baby yesterday and then all of a sudden they’re told, You have a breast cancer, not only might your fertility be threatened by the chemo, you might need, but oh by the way, now you also need to take hormonal therapy for somewhere between five to 10 years, okay.
[00:21:38] So this is a real dilemma for these women. And we were seeing this, even though young women with breast cancer isn’t like the biggest group with breast cancer, it’s the group that obviously has this problem by virtue of being young, they’re not done with their families. They may not have even started. And so these patients were coming into my clinic, in particular, and we were saying, Oh my gosh, she wants the best breast cancer care? Well, five years of endocrine therapy, which is a pill you take once a day, reduces risk of hearing from that breast cancer again, improves survival. But part of living well after breast cancer is doing everything else she wanted to do with the rest of your life. And that includes having babies.
[00:22:17] How can we help women to get the best breast cancer care and at the same time also optimize their family planning and their future goals? And that’s how the POSITIVE trial was born. And it was basically a study where we enrolled over 500 women from around the world. Literally 120 sites on all the continents that actually see breasts cancer patients except Africa. We did not have a site in Africa, I will tell you.
[00:22:49] And we enrolled women over a four year period. Desire to have pregnancy was the most important thing, and they had to be 42 or younger and on endocrine therapy for at least 18 to 30 months. So they couldn’t have been on it for five years and they couldn’t have been on it for less than 18 months. And they had to be willing to interrupt their endocrine therapy, ideally for no more than two years, in order to try to have a pregnancy. If they get pregnant, carry the pregnancy ideally, deliver, nurse for a period of time if that’s something they wanted to do and it was feasible. And then get back on their endocrine therapy to complete a full course, a five to 10 year course or somewhere in between, depending on their level of risk and their preferences, which they would decide with their doctor.
[00:23:43] So we enrolled and we got all these women on over this, you know, four year period. And fortunately we were able to present the data very recently, and what the findings, the high level findings from this study, showed was that the vast majority of women became pregnant, which was great. A substantial proportion of those women had to use in-vitro fertilization or other kinds of reproductive technologies to help them become pregnant, about 43%.
[00:24:14] So it wasn’t easy for everybody to get pregnant. And most importantly, beyond the ability to get pregnant, was that we didn’t hit a pre-specified safety boundary. So the study was designed. People may be used to studies where people get randomized, where half the people get a drug and half the people don’t get a drug or get the placebo, a sugar pill. And then we see how the two groups do.
[00:24:42] We obviously couldn’t randomize to pregnancy or no pregnancy for this group of patients. What woman would go on that study, right? Who would get randomized to I- you know, oh, you can get a baby if the coin flips right. And you cannot, I mean, there’s so much you can’t control, but that one we could control, and we said, this is not an ethically feasible study to do, even though that would be the pure way of doing it.
[00:25:06] So what we did instead was we set based on historical controls, we set a safety boundary and we said, okay, in prior studies where women like the women we want to enroll in POSITIVE went on, here’s the rate of recurrence of breast cancer coming back, either it locally or elsewhere in the body.
[00:25:25] And we set that safety boundary. And the great news was that we didn’t meet that safety boundary. Our risk of recurrence in POSITIVE was below that threshold. That was the really good news and that was important because for years, and the concern was that we might, by giving people who had a hormone-sensitive breast cancer history by letting them get pregnant, that those hormones may have been like throwing gasoline on a potential fire and may have ignited a bunch of recurrences.
[00:26:00] And the good news is that it didn’t appear to do that, and that it was no greater risk than this specified safety threshold. So the punchline is interrupting endocrine therapy for pregnancy did not appear to harm these women. At least in the short term. Beause the follow up data is only a little over three years.
[00:26:23] The follow up data, it did not appear worse than women who didn’t take a break for pregnancy from their endocrine therapy. The important thing beyond noting that we have to follow these women long term, because there may change in terms of risks of recurrence longer term, is that- and I think Lindsay’s an example of this. Coming off endocrine therapy and or becoming pregnant isn’t a breast cancer treatment, right? And women still will hear from their breast cancer again, unfortunately. Until we get better treatments, whether they went on POSITIVE or not, right?
[00:27:05] Adam Walker: I’m no doctor, so I just want to make sure I’ve got this. So I think what I’m hearing you say about the POSITIVE trial is essentially that the women that wanted to get pregnant were able to take a break from the endocrine therapy long enough to potentially and for many conceive and bear a child. And that did not show- doing that and taking that break did not show a statistical impact on the probability of recurrence of breast cancer. Is that, simply put, is that essentially what the trial is?
[00:27:36] Dr. Ann Partridge: That is exactly what I was trying to say. So thank you for saying very succinctly.
[00:27:40] Adam Walker: I think you said it I think you said it that succinctly. I just wanted to make sure that I’m understanding what you’re saying. That is, well, that’s a pretty fantastic result, right? I mean that because it gives.
[00:27:53] Dr. Ann Partridge: It’s a triumphant result. People were thrilled with this presentation. We had it at one of our big meetings. And we were all very excited to both see the data and to be able to present the data to the wider oncology community and to the patients and the women who are hopeful that this might be them someday.
[00:28:10] Adam Walker: Well, I mean, it brings hope, right? I think you said it that, that you said it right. It’s a triumphant result. That’s a great way to say it. So then so with that in mind really just last question I have for you. What advice would you give to women that are processing news of a breast cancer diagnosis and now have to think about their ability to have children and think through that whole process?
[00:28:33] Dr. Ann Partridge: I think you heard it from Lindsay best. That women really need to step back and think about their choices and their options, and that should start at diagnosis. And so, you know, we and others have tried really hard to make sure that we bring this issue, among others, that young women contend with, but certainly their fertility concerns are things that they need to think about kind of from the very beginning. Because we know that our treatments can either threaten or kind of take away sometimes the ability to get pregnant.
[00:29:10] And so it, before we burn a bridge with the patient or before she burns the bridge, right, because she’s making her treatment choices. We want to make sure that she understands all of the potential ramifications as well as her choices, both in terms of treatment as well as fertility preservation options, and how she might utilize that both, you know, early on and long term.
[00:29:32] Adam Walker: I like that. I like well, but, and I appreciate your thoughtfulness and I think to me the big takeaway is away is if you are a young woman, and then you have the unfortunate diagnosis of breast cancer, and you do still want to have children there is still hope for that, right? And I think that’s a, I think that’s a pretty good takeaway from this conversation.
[00:29:51] Dr. Ann Partridge: Absolutely. There is, you know, for young women with breast cancer, fertility concerns is truly one of the very important things they face and they need to understand their options, and that for many women, it is not only feasible, but it’s quite safe in general to have a pregnancy. That being said, every woman’s situation is different, and we do need to wait for the long-term data from POSITIVE to really understand kind of the long-term safety of this approach.
[00:30:25] Adam Walker: Of course. Dr. Partridge, thank you for the work that you’re doing. It’s so important. And thank you for joining us on the show today to share more about it.
[00:30:34] Dr. Ann Partridge: Thank you. It was a pleasure.
[00:30:40] Adam Walker: Thanks to Wacoal for supporting this podcast. Join the more than 1,000,000 people who have been fit at a Fit for the Cure event. Visit fitforthecure.com to learn more and book an appointment today.
[00:31:05] 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.