Dr. Fox: Welcome to “High Risk Birth Stories” brought to you by the creators of the “Healthful Woman” podcast. I’m your host, Dr. Nathan Fox. “High Risk Birth Stories” is a podcast designed to give you, the listener, a window into the life-changing experiences of pregnancy, fertility, and childbirth.
All right, Jamie, welcome to “High Risk Birth Story Podcast.” Thank you so much for coming in.
Jamie: Thank you.
Dr. Fox: We’ve known each other a while now. And obviously, I know the story of your birth and you know the story of your birth. But it’s such an amazing, in many different ways, the word amazing story. And I’m just really appreciative that you were willing to come and talk about it.
Jamie: Thank you. It’s cathartic for me.
Dr. Fox: I do believe that. I think for the podcast, that’s been my experience, that women come in to talk about their own stories is cathartic. Everyone has a story. And some of the stories are somewhat straightforward. And some of the stories are very complicated with a good ending. And some are very complicated with a bad ending, unfortunately. But I’ve just found that women don’t have that outlet to tell the story in completion. People just say, “You had a baby. The baby is fine. Everything is good. Have a good day,” and that’s it. But it’s important. There’s so much to learn. I mean, from listening to these stories, they’re so unbelievable, and so impressive, and so impactful.
Jamie: Yeah, I look forward to sharing.
Dr. Fox: So, Jamie, we’re talking about the birth of your daughter almost three years ago.
Jamie: Correct.
Dr. Fox: We’re coming up on her 3-year-old birthday.
Jamie: That’s right.
Dr. Fox: Amazing.
Jamie: Unbelievable.
Dr. Fox: Yeah, and I’m feeling old as all these years pass and…
Jamie: You look the same.
Dr. Fox: Thank you.
Jamie: Frozen in time.
Dr. Fox: My body is not frozen in time. I have aged terribly. Just tell us where were you coming into pregnancy, sort of, where you were in life, and what was going on.
Jamie: So I actually was pretty much a newlywed. I was 33 years old. My husband and I got pregnant very, very quickly. We were very fortunate. And I had a pretty standard normal pregnancy, I would say, up until around six months. I was at a regular OB, not a high risk clinic. And they started noticing I was having some issues with my blood pressure riding a little bit high. There was some thought that maybe I did have chronic hypertension, which meant I was a person who had blood pressure that ran higher pre-pregnancy, still open for debate. There were issues controlling my blood pressure. It was running on the higher side. So from about six to seven…my six-month of pregnancy, so the seventh month, we were dealing with trying to manage my blood pressure and control it. And obviously, from the OB’s standpoint, you can probably talk more about it, the concern with the hypertension. The blood pressure is pre-eclampsia or eclampsia, which is a very unhealthy situation for mother and baby. So they were watching me closely.
At some point, when I got closer to my seventh month of pregnancy, my husband and I, we felt, like, maybe we weren’t getting as close attention as I could have been getting as far as my blood pressure was concerned. I had a couple of visits to labor and delivery for high blood pressures. And we felt, like, maybe after having a consultation with the high risk clinic that maybe the high risk team might be a better team to manage what I had going on.
Dr. Fox: Right. At the time, and just for disclosure, you and your husband are both physicians.
Jamie: Correct, young physicians.
Dr. Fox: What did you say?
Jamie: Young.
Dr. Fox: Young physicians. Okay.
Jamie: Yeah, not, like, senior.
Dr. Fox: Understood. Okay.
Jamie: We don’t wield the big stick or a lot of power.
Dr. Fox: You wield a stick that’s big enough. Was that part of it, meaning that you sort of felt, “Well, I’m a doctor, I know about preeclampsia?” Was it led by that or just not even related to that?
Jamie: As you’ll see the story unfold, I think flipping the switch from being the doctor to being the patient is a very difficult flip to switch especially in something that’s very vulnerable like pregnancy or cancer, as we’ll get to that. And so, for me, I think there was a lot of I wasn’t really sitting in the doctor’s office as a patient.
Dr. Fox: It’s tough. You’re a patient, you’re a colleague, you know more, which is sometimes good, sometimes not good.
Jamie: Sometimes not good.
Dr. Fox: Okay. And other than the issues with your blood pressure, did you have any specific concerns in pregnancy that you entered with or was it just sort of, “Hey, we’re pregnant. This is great. This is exciting?”
Jamie: I really didn’t have any specific concerns. My health in general was okay. I didn’t have any history of any major medical issues besides from maybe mild asthma, which wasn’t active at all during my pregnancy. I didn’t have any problem conceiving. Everything had gone well, and we didn’t have any major red flags. So we felt confident and happy. We really had no idea what was coming down the pipeline.
Dr. Fox: And so, ultimately, you did transfer your care formally to the high risk practice, our practice…
Jamie: Correct.
Dr. Fox: …which is happy to say we then got to have you…
Jamie: The best practice.
Dr. Fox: Thank you. Why would you whisper that?
Jamie: I know.
Dr. Fox: Say it loud. So you came aboard, and what was that like? Was it a relief, or was it a little scary that you got, sort of, like…
Jamie: Absolutely relief.
Dr. Fox: …you got bumped up to the next level?
Jamie: Absolutely relief.
Dr. Fox: Relief. Okay.
Jamie: For me and my husband, it was absolute relief. We had met a lot of the team here already because, during the course of my issue with my blood pressure, they had been sending me for consultations with the high risk doctors. And so we had met a lot of them. And so I felt very confident that I was going to get the absolute best care.
Dr. Fox: So you come over to us, and again, that was, as I recall, sort of, the beginning of the third trimester.
Jamie: Correct.
Dr. Fox: The 6, 7 months, 27, 28 weeks. And you come over to our practice, and we’re ready to have you, and we know you, and we’re all excited, and tell us what happened.
Jamie: So actually, it was an interim period between the time that I was being transferred from the previous practice to the high risk clinic. It was about a week-and-a-half where I was just, sort of, chilling at home. And I mentioned I have asthma, so I’m kind of a little bit of an allergic person. I have also a history of eczema. Throughout my pregnancy, I, sort of, had the pregnancy itch. I was getting flare-ups of my eczema. And so, my eczema actually was centered around my torso. So I had very dry skin on my arms, on my chest, on my breasts, my whole upper body, and I would scratch, scratch, scratch all night. And in that week period, between the time I was let go by my previous OB team and moved here, my husband was like, “This is ridiculous. Your skin looks like crap. You have scabs everywhere. You’re itching, like, crazy. Come on, you know better. You need to do something. Put something on your skin.”
And so I started really making a point of trying to moisturize after the shower morning and night. And it was then when I was really taking time with my skin along my breast area that I felt something that was different. And I would literally sit with my husband every night and I said, “Feel this. Feel this one spot.” It’s the two of us sitting on the bed. A tiny spot, I would say less than half an inch by half an inch on my left breast, on the outer area. I was covered in eczema, which is basically, like, a very rough, excoriated rash. We’re both sitting there thinking, putting on our doctor hats, “Is this, like, an inflammatory…what is…?” It was a small, little firm area. Nothing was distinct. It didn’t feel like a pea. It didn’t feel like a ball. It was just an area of the skin that literally if you press on this table right here, it just felt a little hard. It just felt different. My husband said, “Oh, it’s nothing. Don’t worry about it.” And every night, I would sit and I would touch it every night in that week period.
Dr. Fox: Did he really think it was nothing, don’t worry about it, or was he saying that just so you wouldn’t worry until you saw somebody else?
Jamie: So it was a week period where literally we were convening every evening and touching it. He would say, “I think it’s nothing but…” He said, “You know what, we’re going to see the new doctors anyway this coming week,” I don’t remember if it was Monday or whatever, “let’s bring it up.” And I was a person like, at that point, I was already coming with my list at every appointment of all my questions and especially with a new practice, going over different things, especially I knew my situation already with my high blood pressure that there were going to be some changes probably as to when I would deliver and stuff like that. So I had my list. And the last thing I put on my list to discuss was, oh mention this spot on my breast.
Dr. Fox: Last on the list.
Jamie: Last on the list and almost forgotten, by the way.
Dr. Fox: After all the critical things, like, you know what hair dye can I use…
Jamie: Right. Exactly.
Dr. Fox: …and can I have a Diet Coke, all those important things. Yeah, exactly.
Jamie: Yeah, exactly, those important things. But I mean, our first visit was with Dr. Romero, Julie Romero, who was great. And she actually ended up delivering me in the end. And she was telling me about my blood pressure. I learned some things there that I may have not been anticipating that I may not go to full term, that we may consider inducing me early. I still would probably be able to have a natural delivery, but they might not let me go all the way because of the risks of pre-eclampsia. So I think I was a little bit distracted. And we were all like, “Done. Thank you so much.” Getting out of our chairs, and the last little thing on my list, I said, “Oh, wait, wait, wait, Dr. Romero, wait,” I said, “this last thing, I’m so sorry to take your time. I just have to spot on my breast. I don’t know. I just felt it. I have a lot of rashes and eczema. I don’t know if you mind checking it out.” “Of course, we’ll check it out.”
My husband, and I, and her went to the examining room and she examined it. And her, and I, and my husband all sat there and we all looked at each other. And we all said, “You know, it’s probably nothing. But let’s err on the safe side and let’s get an ultrasound.” So for some of the listeners, and maybe you can maybe touch on it more, for different types of breasts and different ages, you do different types of imaging. Ultrasound is often the first stop for younger women. Me, personally, I happen to have, at that time, very large breasts that were also very dense. So ultrasound was my first stop.
Dr. Fox: And also, people sometimes get concerned about mammograms because of the radiation in pregnancy.
Jamie: Oh, right.
Dr. Fox: Although you can do them, clearly you can do that. But some people do that and also they’re certainly more uncomfortable to undergo a mammogram. And often if the ultrasound…someone in your age group at the time, if they find it’s a cyst, just filled with fluid, no one’s gonna think it’s a concern. Maybe they’ll put a needle in it and, sort of, aspirate it. But that’s ultrasound. That’s easy. And so, typically people will start with ultrasound. But you should actually leave it to the radiologist. Frequently, they know what they’re doing. Did you know Julie before this pregnancy?
Jamie: I did not. No, I’d never met her.
Dr. Fox: Right. And did you know her before that meeting?
Jamie: No.
Dr. Fox: So the first time you’re meeting, you’re doing everything, and then you’re all…
Jamie: Correct. Yeah. I’ve met a handful of the doctors in your practice before but not Julie. She said, “Let’s get you scheduled. We’ll do it. Of course, we’re going to check it out.” She was very reassuring, which, of course, who would think, like, why? I have no family history of breast cancer. I have no family history of ovarian cancer or anything that could even raise an alarm that somebody my age should have such a problem. And so, all right, something in me was weighing very heavy on me. I had a little bit of trouble getting an appointment. I had about two weeks until the ultrasound appointment, and I was extremely anxious. Obviously, I was pregnant, all of those things.
Dr. Fox: Do you feel the mass changing over those two weeks?
Jamie: No, I did not. No.
Dr. Fox: Right. That would have been even more scary, obviously.
Jamie: Yeah. No, I didn’t it. And the truth of the matter is that when you talk to other people and in retrospect, these things don’t grow quickly. It’s not something that appeared overnight. And so, in the two weeks, it’s kind of, like, a drop in the bucket really in the scheme.
Dr. Fox: Medically, but not emotional.
Jamie: Not emotionally, for sure, but medically. So no, I don’t feel any kind of way about it. It was just anxiety-inducing.
Dr. Fox: Sure.
Jamie: So I was calling every day to see if they had a cancellation, and they didn’t. And then we showed up on the day for the appointment. And you go in, and it’s a very small room, and this is pre-COVID, but you actually can’t take your spouse in the room because the room is very small. So they have the spouse wait outside. It’s not only a cancer imaging place. It’s for all kinds of things. So they don’t automatically assume that you’re going to need some type of support.
Dr. Fox: And the doctor who you were supposed to see, didn’t that person book out?
Jamie: Yes. So I had Google imaged the doctor who was supposed to be doing my ultrasound. I don’t even remember his name to this day. But as my husband and I were sitting in the waiting room, we saw him getting his bag and his umbrella and going to the elevator. And I said to my husband, “What is going on here?” I said, “I need this done today. I don’t care what happens. I will drag him out of his car. He needs to come do this today.” So ultimately, when they called me in, they said he had a family emergency and I had a different doctor. It’s actually first the tech does the ultrasound, and then they call the doctor in. I have a medical background. I’m watching the screen as they’re doing the ultrasound. I could immediately see that there was an irregularity there. I’m not a radiologist, but for my untrained eye, semi-trained eye, I could see that there was a different in the…
Dr. Fox: Right. And you could see they’re taking 46 pictures of a 1-cm space versus 2 pictures of everything else.
Jamie: Yeah. I’m alone. I’m pregnant. I’m basically over seven months pregnant at this point, sitting on this bed, alone in this tiny room with this tech. And she said, “I’m going to get the doctor.” I said, “Okay.”
Dr. Fox: So, the techs, they can’t tell you what they think because you don’t want them to say anything wrong either direction.
Jamie: Yeah. I don’t blame them.
Dr. Fox: You don’t want them to say it’s fine when it’s not, or say it’s not fine when it is because that’s a disaster. We have the same issue with pregnancy, with babies.
Jamie: I feel bad for them.
Dr. Fox: It’s very hard for them.
Jamie: Yeah, it’s very hard. So the doctor came in, lovely lady, and she actually got my husband. So he came into the room. We’re all huddled in this tiny room, the four of us, me, the tech, my husband, and the doctor. And she said, “It really looks suspicious. It doesn’t look good.” I said, “You think it’s cancer?” And she said, “I can’t say for sure. But it looks very suspicious for cancer.” And I just sat on that bed and I just was bawling. I was crying. I said, “So look, what do I do? I don’t even know where to start. What do I do?” She goes, “Well, you need to get a biopsy done. We can’t get you in here…” this was a Friday. “We can’t get you until Monday.” I just begged her. I said, “Please, I’m begging you. I’m begging you. Please do it today. Please, please, please.” I’m begging her, not knowing what she could do. And she walked out, and she came in, and she, sort of, gave me a smile and a wink. And she said, “Oh, we just had a cancellation. I’m going to do it for you right now.” A lot of humanity. It’s a lot. It was a lot.
Dr. Fox: She did what she could under the circumstances.
Jamie: Yeah, for me.
Dr. Fox: Those three days, it’s a big deal. It’s a big deal.
Jamie: Yeah. By having the biopsy done on Friday, I was actually able to get the results on Monday.
Dr. Fox: Who called you with the results?
Jamie: So actually, she had told me to anticipate a phone call from her. But it was getting close to 4:00 on Monday and I hadn’t heard. So my husband and I, just me and him, we haven’t had the baby yet, so we’re pregnant, we’re sitting, and we’re looking at each other going, “Is this a good sign or a bad sign?” Like, meaning if she hasn’t called, does this mean everything’s good or, you know? So it was 4:00 and imagine that the clinic closes at 5:00 or 5:30, I decided to just to call. So I actually called her and she’s like, “Oh, I was meaning to call you. Do you have a minute to talk?” I said, “Of course.”
Dr. Fox: “You bet I do. I just called you.”
Dr. Fox: Yeah. And she said it was positive for cancer. You can’t necessarily see the stage at that time, but you can say what the pathology is. So meaning, early-stage could be, like, DCIS and then invasive, which is more of the cancer side is invasive ductal carcinoma. So that’s what I had.
Dr. Fox: Right, because the stage is more how far it’s spread, and you can’t know that from a biopsy. The biopsy tells you the cancer we’re looking at, how gruesome is it? There’s different levels of how bad of a cancer.
Jamie: So the biopsy can tell you basically…
Dr. Fox: The grade.
Jamie: …the grade. It can tell you the hormone status, or HER2 status. But it can’t tell you anything about your lymph nodes. It can’t tell you anything about distant issues in your body, God forbid. So, she said, “This is the diagnosis, and I’m really sorry, and as soon as possible…” I said, “Well, who’s my first stop? Who do I see? Am I talking to an oncologist? Am I talking to a surgeon?” And she said, “Your first stop is a breast surgeon. It’s your first stop.” So she gave me some names. So we got off the phone. In all honesty, my husband and I, we sat there and we cried for a very decent period of time. And actually, now that I’m remembering, the doctor who did my biopsy, she actually reached out to a couple of the surgeons. So she actually took that job off my plate so that I could really have some time to absorb. So she’s told me to hang tight for her email to see who was going to be able to see me the soonest.
Dr. Fox: Over the weekend between the biopsy and the results, were you assuming it was going to be cancer, or were you assuming not, or were you already reading up on it and trying to learn about it or you were like, “I’m just going to mark it out and let’s find out?”
Jamie: No. I definitely felt a pit in my stomach that something was wrong. I felt that. I felt my intuition, and I don’t know, I just felt that something was off. So that’s how I got my diagnosis. So we sat and we really cried. You get all the feelings, “Why is this happening to us? What did we do wrong? It doesn’t make sense. Could there be a mistake?” And then, obviously calling my parents and telling them, which was a whole other level of…
Dr. Fox: Your poor parents.
Jamie: I mean, it was devastating.
Dr. Fox: I can’t imagine.
Jamie: It was devastating.
Dr. Fox: I mean, listen, I can’t imagine it happening to yourself but also happening to your child.
Jamie: It was absolutely devastating. I mean, I got the diagnosis on Monday, and my mom was already…my parents, they don’t live in New York. My mom was already with me by Wednesday for my appointment with the breast surgeon. It was very difficult. I would say I didn’t sleep, I wasn’t eating, just a lot of fear, a lot of fear of the unknown. I didn’t know what this meant for me. Was I going to survive? Was my baby gonna survive?
Dr. Fox: Did you have a sense at all of what it meant in terms of pregnancy? And obviously, you had an idea conceptually just, as doctors, it’s breast cancer, it’s probably surgery, and maybe chemo, maybe radiation, it depends. You, sort of, understand the brackets of what’s going on here. But pregnancy is, like, a whole vacuum to most doctors. Like, what the hell happens in pregnancy? So did that even enter your mind at first or was it all cancer?
Jamie: It did enter my mind. It did enter my mind. And I’m very much the type of person that if somebody gives me a problem or a diagnosis, not only for myself, even in my practice with my own patients, I’m very much about reading, and learning, and going into as much detail as I can to try and understand. And I felt like for my own situation, the only way to really, not get out of it necessarily, but the best way to handle it was to educate myself the most. And so, in that brief period of time, before I saw the breast surgeon, I already understood that in breast cancer, if you’re diagnosed while pregnant, there’s three stations, and those three stations, first, second, and third trimester, that really determine what your treatment is going to look like. And so because I was on that cusp between second and third, I had a feeling that there was a chance that I might get chemo while I’m pregnant. That fact, by the time I went to my appointment, I, sort of, was thinking…
Dr. Fox: Right. It was on the table.
Jamie: I was thinking, “Is that what’s happening?” Not like, “Am I getting chemo,” but, “Am I going to have chemo whille I’m pregnant? And what is that going to do to my baby?” Scary stuff.
Dr. Fox: It is scary stuff. And, again, when someone’s reaching towards the end pregnancy, you’re, sort of, making the decision, is it better to wait, deliver the baby, and do everything afterwards, or is it better to start beforehand? And if you start beforehand, are you just doing surgery when you’re pregnant? Are you doing surgery plus chemo when you’re pregnant? And, sort of, figuring that out, and there’s no one answer, obviously…
Jamie: There is not.
Dr. Fox: …because it depends on exactly how far pregnant…what’s with your pregnancy? What’s with the baby? What’s with the cancer? All these things then have to be discussed. And I know that there was a lot of talk about that after you met with the surgeon.
Jamie: Yes.
Dr. Fox: So, you met with the surgeon, I guess was it a few days later, on Wednesday?
Jamie: Yeah. So diagnosed on Monday, met with the breast surgeon on Wednesday.
Dr. Fox: I’m gonna ask you how that went, even though I know how it went. How did that go?
Jamie: Yeah. So pre-COVID, I could have my family with me, which of all things that I’m grateful for that it didn’t happen to me during COVID because I cannot imagine going through any of this and being alone in talking about these things. But there I was. I was seven months pregnant and change, sitting in a breast surgeon cancer clinic with my new husband and my mother who lives out of state. I’m like, “What is happening?”
Dr. Fox: And just to set the stage, you’re seeing someone who’s at a major academic medical center who sees breast cancer all the time, sees pregnant women with breast cancer. This is not some, sort of, random clinic that’s never seen this before, right?
Jamie: A hundred percent.
Dr. Fox: You’re in the best of the best.
Jamie: The best of the best, for sure. But I will probably maybe correct one thing that you said, not necessarily corrected but modify it, I’m not sure that all breast surgeons are comfortable taking care of pregnant women with breast cancer.
Dr. Fox: I didn’t say comfortable. I said they’ve done it.
Jamie: And I don’t know. I don’t know. I know it’s not uncommon. I know it’s not uncommon. But I feel like it’s not their bread and butter. It’s not what they’re dealing with all the time.
Dr. Fox: Well, most doctors have a phobia of pregnant women.
Jamie: A hundred percent.
Dr. Fox: They’re terrified of pregnant women, and they don’t want anything to do with them because it’s…
Jamie: A hundred percent.
Dr. Fox: But there is definitely experience there in pregnant women.
Jamie: Yes, for sure. Yeah. Before I even met with the doctor, I had a mammogram done, which they reassured me would be fine while pregnant. So that was actually the first good bit of information that I got after I had them…they covered my stomach to make sure that the baby would be fine with the radiation, that my cancer was only in one spot. I didn’t have satellite lesions. I didn’t have any other lesions in the other breast, any other lesions in the same breast. It was one spot, which for me, that was, you know, I’m looking for any…I’ll take any silver lining I can get.
Dr. Fox: Under the circumstances, that’s best-case scenario.
Jamie: Yeah. So meaning it wasn’t…there are different types of lesions that are extending out. There was no chest wall involved, all that kind of stuff. Thank God. So I met with the breast surgeon, and she said, “Look, I’m just going to give it to you straight, how this is going to be. You have cancer, but you’ll most likely survive. You will most likely survive this,” which I was like, “That’s great news, right?” And then right after she told me that, she said, “But it’s just something you need to know that you’ll never be able to carry another baby again.” And I was just, like, tunnel vision. We all just sat there dumbfounded. And I was like, “What? What do you mean? Why?” You just told me I’m going to survive. I’m going to thrive. I’m going to do great. Why shouldn’t I be able to get on with my life after this?
Dr. Fox: You’re not taking out my uterus, are you?
Jamie: Right. Yeah. She said, “Well, your cancer’s hormone positive.” My cancer was ER-positive, which is estrogen and progesterone positive, HER2-negative, for people that are interested, which means that my cancer, the gas that was fueling my cancer was the female hormones, estrogen and progesterone.
Dr. Fox: Which is probably why it popped up when you were pregnant.
Jamie: But it didn’t appear, meaning…
Dr. Fox: It grew because you’re pregnant.
Jamie: It grew because I was pregnant. It wasn’t created because of pregnancy.
Dr. Fox: There’s actually a lot of debate about, as a side note, whether pregnancy increases the risk of breast cancer overall.
Jamie: Oh, I have a lot to say on that, Dr. Fox.
Dr. Fox: And most of the data say it doesn’t. It actually…
Jamie: It does not and in fact…
Dr. Fox: Yeah, it probably saves lives by showing the cancers that are otherwise, sort of, hanging out and hiding. You get pregnant, they grow, but then you can take them out.
Jamie: That’s right. And then I have actually have a lot to say on that also because I’ve learned a lot since this whole experience. I would say that we were floored. And the doctor kept talking, but I was still on this. I wasn’t thinking about cancer anymore. The dreams of the family that I wanted to have and the life I wanted to build, I felt like it was all gone in an instant.
Dr. Fox: And it’s so interesting…
Jamie: Not because of cancer.
Dr. Fox: Not because I may not survive cancer, it’s like, “Well, I’m gonna survive, but now I can’t have kids anymore?”
Jamie: She was trying to talk to me and, “We’re gonna do this. We’re gonna…” And I’m like, “Can we go back to that?” She’s like, “Why do you want to keep talking about this? This is what it is. This is how it’s going to be if you can…you know, maybe one day somebody else will be…you know, hopefully, you can freeze your embryos, maybe, if we have time and somebody else can carry a baby for you one day.” Nothing against that. I don’t have any feelings on surrogacy, not pro or against, whatever. It’s just not something that I ever thought about for me. And I was just floored. I couldn’t wrap my brain around it.
Dr. Fox: Did you have a feeling, at the time, that that may not be correct, meaning that you’re like…were you skeptical or just shocked?
Jamie: I think I was mostly shocked. And I would say that going back to what we were talking about flipping the switch between being a provider and being a patient, my brain and my heart were fighting because I didn’t know how much to challenge the doctor on it. Since then I’ve learned a lot. And if you want an opinion about something, go to that specialist. So a breast surgeon might not be the best person to talk to you about risks related to fertility. There are other specialists for that, like oncologists and fertility specialists that can give you a better risk assessment about what those challenges might look like for you. But at the time, my life was over, not because of the cancer. I felt like all my…we’d mentioned that I have a medical background. I’ve spent majority of my adult life not focusing on my personal life, focusing on school, and training, self-advancement, and I felt like, “Now is my time. Here I am. Now is my time. I’m gonna pop out three kids back to back.” We had a plan, and it was all gone in an instant from one sentence that somebody said. It was crushing. It was soul-crushing, absolutely soul-crushing.
Dr. Fox: It’s so crazy also. I mean, I think back, I know that between that day and the next couple of weeks, we spoke several times at length about…because we spoke, you spoke with one of my colleagues and there’s a lot to discuss, obviously. But I don’t recall that that was even part of our discussion. I don’t remember. When you told me that today that you were told that you wouldn’t be able to have kids, I don’t recall that I ever knew that someone told you that.
Jamie: No, I don’t think you did.
Dr. Fox: Yeah. I mean because we were talking about, “Okay, you have cancer. What’s the plan? Are we going to do surgery first?” And that was the big discussion, talking about what to do with the pregnancy.
Dr. Fox: I don’t know how much Julie remembers, Dr. Romero, which I don’t know how much you want to build up to my delivery. Ultimately, when I came to deliver, which we can get to the circumstances of that, I just was begging her to make it go my way. And I said, “You know that this might be my last shot. I’m not going to get to do this again. Please don’t make me have a C-section. Please. Please.” And I was begging her, like, a normal person. So we can get to that. I think I felt like also I didn’t want anybody else to tell me no at that point, meaning that doctor had told me that but I don’t think I was at a stage to discuss it with so many providers to be like, “Yeah, that’s true. You’re screwed.”
Dr. Fox: You met with the breast surgeon, you met with us, you also met with an oncologist.
Jamie: So I actually did not meet with an oncologist early on. Actually, after I met with the breast surgeon…your team, actually, I don’t think was involved in the conversation just yet. I actually went for a couple of other consultations to different academic facilities…
Dr. Fox: Right, that I remember, definitely.
Jamie: …to get different opinions. And what the doctor at my initial consultation had said was, “The baby needs to come out. We need to get your cancer out, but the baby needs to come out first.” I said, “But I don’t understand. I’m seven-and-a-half months pregnant.” “But we have to get the cancer out.” It didn’t even occur to me at that time to say like, “Why can’t the two things go together? Why can’t I stay pregnant and you take the cancer out?” She was talking about needing to be induced so that I could go on to have this lumpectomy. So a lumpectomy is where you take out whatever portion of the breast has the cancer plus the borders that are hopefully clear, not a mastectomy, which is the whole breast. Now I know a lumpectomy is not a major surgery. Women that are pregnant even have appendectomies, which are much more invasive. And so that’s what prompted me to get a couple of other opinions. And in that time is when you and I and the team here really started putting our heads together to figure out what’s going on and what we’re going to do.
Dr. Fox: It’s not something that any one specialist can come up with a plan because it’s something where the…what we do, the MFM doctors, we have to talk to the surgeon, and we have to talk to maybe the oncologist. And again, it’s, sort of, based on this cancer, can you operate, how extensive is it going to be, how long is it going to take, what’s going to happen, what’s the blood loss going to be, when you have to do chemo, which chemo do you have to give, how soon, what if it’s delayed two weeks, four weeks, six weeks? And everyone’s got to, sort of, figure it out and come up with the right plan for the right person. And also, there’s decisions to be made where there isn’t a right or wrong answer. And it comes on to you, which direction do you want to go? And that’s hard, obviously. But it takes a lot of conversations. And it really has to be a team approach. And it’s hard. This is hard stuff, obviously.
Jamie: I would say that at that moment in time, I don’t recall a sense of what do I want, which was a very difficult thing for me, A, having type A personality, a medical background, of always being in control. And I would say that the provider, the breast surgeon, was reluctant to operate on me while pregnant.
Dr. Fox: Right. But we twisted her arm.
Jamie: Yes, we did.
Dr. Fox: I remember speaking to her…
Jamie: It was a very tumultuous two weeks
Dr. Fox: …saying, “No, no, you can do it. It’s fine. Don’t worry. We’ll monitor the baby. It’s all good.”
Jamie: That’s right. And when that plan was solidified, I took such a huge sigh of relief because I’ll never forget Dr. Fox saying to me, “We don’t need a sick mom and a sick baby” And when you said that to me, something just clicked and I was like, “This is the plan,” because whatever is gonna happen with me is gonna happen with me, but for something so small like a lumpectomy, there’s no reason why she can’t get her shot to go at least to somewhat full term and have less complications later.
Dr. Fox: Usually the surgeons, they don’t even realize it’s an option. They’re like, “How…?” And we say, “Listen, you’re not operating anywhere near the baby. Unless there’s the craziest complication in the history of lumpectomies, nothing’s gonna happen to anybody. And we’ll monitor the baby just in case.” And if you induce the labor and deliver the baby, you’re talking about a baby that’s been in the NICU for a month and probably will be okay, but there’s a lot of stuff. Then, you have cancer and you’re recovering from it, and now you have a baby in the NICU. And also from a mental health perspective, it’s tough. And so I think the plan we ultimately had, which of course got blown up, the plan was we were going to do the surgery at 32, 34 weeks, and then after the surgery was done, we’re going to deliver the baby so that you could get your eggs frozen so that you can then have chemo.
Jamie: After the surgery, you were gonna let me carry to 36…
Dr. Fox: Right, 36.
Jamie: …just about 36 weeks.
Dr. Fox: You have to recover anyways before you get the chemo.
Jamie: Right. Exactly. At that time, actually, they didn’t know if I was gonna get chemo or not. That’s an interesting thing. That was actually determined later by something called an oncotype test.
Dr. Fox: And that plan would have allowed you to get the lumpectomy sooner and deliver a little bit later. And were you to need chemo, you would have had the time also to do some fertility, store some eggs because…
Jamie: Right. And also would not be pregnant when I get my chemo.
Dr. Fox: Correct. Yeah.
Jamie: Not that it’s unsafe. I just want to say that there are many women who get chemo while pregnant, especially in the second trimester, and the side effects are little to none.
Dr. Fox: It’s okay in the third trimester too. People think it’s much more dangerous to the baby than it actually is. The reason you don’t normally do it in the third trimester is by that point, you can usually just wait until after delivery. But it’s doable.
Jamie: Yes.
Dr. Fox: Okay, so that was the plan, and we were ready.
Jamie: So that was the plan. And I felt like, man, I had this rock star team. I had the best breast surgeon in Manhattan, and I had the best maternal-fetal, the best high-risk pregnancy doctors. And we just felt so relieved and confident. But I had a lot going on internally and emotionally. And going back to my blood pressure, it was being affected by all of this stress. And I would say that to say that I was in my right mind at that time is probably an absolute lie. Sitting before you today is, like, a normal, composed person. But I would say that I definitely was going through an emotional breakdown, for sure, just the reality of it all that I wasn’t going to be able to have more kids or carry a child. I didn’t think the cancer was going to kill me. I just thought my life was over, meaning for my hopes and dreams for my family with my husband. And I was a mess. I just was a mess.
Dr. Fox: As an outsider, you did look like a mess in terms of…but, sort of, as expected. I mean, none of us were saying, “Oh, my god, she’s losing it.”
Jamie: [crosstalk 00:33:13.929]
Dr. Fox: No. We’re like, “This is really hard. She’s trying to juggle all these things and deal with all these things.”
Jamie: I definitely think I did the best I could, honestly…
Dr. Fox: No, you did great.
Jamie: …with that I had.
Dr. Fox: You did as well as anyone could do under those circumstances [crosstalk 00:33:27.339].
Jamie: Yeah. I can tell you 100% looking back now, 100% I can tell you that I was in a completely dissociative state to the point where…and this is where the plan got blown up, is that I basically came in to the clinic for my pre-op appointment, for this lumpectomy while pregnant that everybody, the gold star team is on board to help me, and my blood pressure was like…
Dr. Fox: New plan.
Jamie: Yeah. And they said, “All right. Well, you have to go to the hospital now.” Looking back now, in the time between that the plan was put in place and the time that I came in, I was not well, meaning, like, I wasn’t feeling well. I could say looking back that I definitely was ignoring signs of being sick, for sure. But my mind was so wholly focused on getting to the lumpectomy and carrying my baby to full term, to the point where that sounds crazy. Like, I’m a physician, how are you ignoring signs that you are medically ill to the diagnosis of preeclampsia, which is there’s no logical sense behind it because preeclampsia can be life-threatening for the mother and for the baby. So there’s no logic behind it. But all I can say is that I was not in…I was in a fight or flight mode for sure, evident by my blood pressure. I just felt completely defeated when I was admitted to the hospital to have the baby.
Dr. Fox: Right. Right. So that was the plan. We said, “A, it’s not safe to have surgery when you’re like this. B, it’s not safe for you in general. C, it’s not safe for the baby.” So when it’s that bad at 34 plus, we would have done that anyway. Cancer, no cancer, at that point we’re like, “All right, it’s time to deliver. It’s safer for you, safer for the baby.” We said, “Okay, you’ll deliver, and then you’ll have the lumpectomy, and we’ll just, sort of, just change the order of things.” Do you, sort of, feel like, “Well, at least this was taken out of my hands,” in a sense, that, “I didn’t choose when to deliver the baby and when to do this. This is just, sort of, dictated,” or did you feel, like no control was taken away from me?
Jamie: It’s a very complicated question. And I’ll say that some of it…
Dr. Fox: This is a tough podcast. We really get into it.
Jamie: Some of what you said right now, I did feel, but not in relation to the delivery. So for example, ultimately when I needed chemo, in between the time that I had the baby and then I had the lumpectomy. They take out the tissue. They send it for a special test called oncotype, which basically determines whether you’re going to have chemo. If the number is low, you don’t need chemo. If it’s high, you for sure need chemo. If it’s moderate, in the middle, it’s like a discussion between your doctor and you decide. And I was so anxious, so anxious that I didn’t want chemo. I was so, so, so anxious. And then when I got the result that my score was high and I needed chemo, the wave of relief that I felt…because I felt, number one, the decision was taken from me, like, this is the number in black and white, you need chemo. Number two, I felt like, let’s just throw everything at it. We are just gonna throw everything at it, like, chemo, whatever. Whatever, we are gonna do it, so in that regard.
But as far as the delivery goes, I would say probably not. I didn’t feel that way at the time. Looking back, I think everybody helped me to the greatest extent that they could. I was admitted and nobody told me, “You are 100% needing a C-section.” Nope, not one of the doctors said that to me, which I was so appreciative of because the only thing I could think is, this is my only chance. This is it for me. However this goes right now, however you feel, if you have a once-in-a-lifetime chance to experience something, you might want to grab on to it and take it. So it was very emotional. But I would say that they gave me the steroids to help the baby’s lungs develop. So I was given a 48-hour, kind of, chill-out period with the wonderful magnesium on board. So the magnesium is the IV medication they give to bring down your blood pressure.
Dr. Fox: And if you weren’t loopy enough, that really…
Jamie: I was, like, drunk and high at the same time. My mother was like, “Has she had a stroke?” Like…like that, two days of just chilling out. And then I was very appreciative. The team gave me a chance to try and have a natural delivery to get induced. And I felt like it was the best-case scenario that at least I could try to have somewhat…people talk about these birth plans that they have. I never really had a birth plan. I didn’t think it would ever go this way. This is, like, the worst outcome possible.
Dr. Fox: Very few people having a birth plan, “All right, then I’ll have the lumpectomy.”
Jamie: Right, exactly. But ultimately, after I got the steroids for two days, they decided, “We’ll give you a chance to have the baby naturally,” and they tried to induce me. But unfortunately, after 24 hours, I wasn’t progressing. The wonderful Dr. Romero came to tell me that, “This is not going the way we want, and we’re gonna have to go to C-section.”
Dr. Fox: Bad news Julie.
Jamie: Right. And I’ll never forget, honestly, I feel sorry for what I did to Julie because I literally just sat there and cried. I just cried and I begged her. I said, “Please, please, please don’t. Just give me another hour. Give me another two hours.” Like, what could she say? What can she do? I’m not trying to get emotional here. But I was just begging her begging, begging, begging, “Please don’t take me.” The whisperer had to come in. Dr. Fox had to come and walk me off the ledge to tell me, “It’s okay. We did the best we could. This is how it’s gonna be.” So ultimately, I had a C-section.
Dr. Fox: Was I that matter of fact and cold about it?
Jamie: No. No, you were great.
Dr. Fox: “This is how it’s gonna be.”
Jamie: No, in a very loving and caring way. And to be honest with you, in this whole process, I think I became very jaded as far as providers go just from some of…words matter. Words are very powerful, especially when you’re in a very vulnerable situation. And it’s very important to find doctors that you can connect to and so…
Dr. Fox: Choose your words wisely.
Jamie: Choose your words wisely. So, no, you were very, very kind.
Dr. Fox: Oh, thank you.
Jamie: And you were able to convince me to go to C-section. Nobody can’t take somebody kicking and screaming who’s out of their mind to C-section.
Dr. Fox: It’s certainly not ideal and potentially illegal.
Jamie: Right. So, ultimately, I reneged. I agreed.
Dr. Fox: Yeah, but it was the right thing. I mean ultimately.
Jamie: One hundred percent.
Dr. Fox: What are you gonna do.
Jamie: One hundred percent it was the right thing. I mean, my daughter who was estimated weight to be 5 pounds 4 ounces came out 3 pounds 14 ounces.
Dr. Fox: Not a good placenta.
Jamie: She was tiny. No. And I just remember I was so drugged. The resident brought the baby over me and was just like, “Here’s your daughter.” And I was so drugged. And I just looked up at her. And I’m going into my training and I said to my husband, I said, “She’s so small. She’s too small. She’s too small.” So, that was scary. But you know what? She was breathing on her own, doing everything on her own. She was just a tiny little thing. Ultimately, she did great. She did great in the NICU.
Dr. Fox: How long was she in the NICU?
Jamie: Less than 10 days, for sure.
Dr. Fox: That’s a short amount of time for 34 weeks.
Jamie: Yeah. She was just there for feeding and growing. That’s it. She literally, thank god, didn’t have any other complications.
Dr. Fox: Like, the superstars of the NICU.
Jamie: If there’s one place that’s going to reel you back into reality, you think your stuff is bad, go to the NICU. Pre-COVID, you meet other people at the NICU, other families, and by that point, both of my parents were already with me. And so we were all sitting in the waiting room together. There’s another family who has a baby who’s been waiting for a heart transplant for how long. It’s just that old story if you could throw your problems in a bucket…heartbreaking. So, NICU, a lot of good lessons there. But my daughter did great.
Dr. Fox: Yeah. And they’re amazing there.
Jamie: Amazing.
Dr. Fox: They’re just unbelievable.
Jamie: I mean, it’s unbelievable. So my daughter did great. For me, I would say that my pre-eclampsia, sort of, extended to postpartum. There’s some problems there with my blood pressure. So I had an extended stay at the hospital. I’ve had a journey since then.
Dr. Fox: If you’re interested in telling your birth story on our podcast, please go to our partner website at www.healthfulwoman.com and click the link for sharing your story. You can also email us directly at hrbs@highriskbirthstories.com. If you liked today’s podcast, please be sure to check out our “Healthful Woman” podcast as well, where I speak with the leaders in the field to help you learn more about women’s health, pregnancy, and wellness. Have a great day.
The information discussed in “High Risk Birth Stories” is intended for information and entertainment only and does not replace the medical care from your physician. The stories and experiences discussed in our podcasts are unique to each guest and are not intended to be representative of any standard of care or expected outcomes. As always, we encourage you to speak with your own doctor about specific diagnoses and treatment options for an effective treatment plan. Guests on High Risk Birth Stories have given their permission for us to share their personal health information.
Dr. Fox: Welcome to “High Risk Birth Stories” brought to you by the creators of the “Healthful Woman” podcast. I’m your host, Dr. Nathan Fox. “High Risk Birth Stories” is a podcast designed to give you, the listener, a window into life-changing experiences in pregnancy, fertility, and childbirth.
When did the lumpectomy get done ultimately?
Interviewee: So the lumpectomy was 10 days after my C-section. So in those 10 days, you know, I had physical difficulties, but also emotional difficulties. Recovering from the C-section was not easy. My breast surgeon had told me to suppress the milk from the affected breast. So because the less milk that was in the breast for the lumpectomy, the cleaner, you know, surgery would be, and the milk makes everything, you know, hard to do during surgery.
Dr. Fox: So finicky, those surgeons.
Interviewee: Yeah. But you know, of course, I’m trying, you know, I want it to be, you know, perfect for the surgeon.
Dr. Fox: Sure.
Interviewee: You don’t want to muddle things, but at the same time I had this tiny baby, she wasn’t even 4 pounds. I tried to breastfeed her from my good breast in the NICU and she didn’t latch and I just took her off. And I just said, I can’t. I couldn’t do it. I felt like there were a lot of things going on. Ultimately I felt like I couldn’t. I felt very much like a failure, just in general, just because I knew that of everything I was going to go to, like, why do I want to breastfeed her now when I know in 10 days, I’m not gonna be able to? Why do I want to give her that only to take it away?
So what I did was I pumped from my good breast as much as I could to give her the claustrum and whatever. I wasn’t making a lot. I think that’s probably down to the stress and all of that, but I did the best I could. And I feel happy about those decisions that I made at that time even though my surgeon wasn’t happy because, sort of, you’re stimulating one breast, the other breast contralaterally might get messages so it wasn’t suppressing as well. But I felt, ultimately, like, I did what I could to help my daughter be strong and grow.
So 10 days later, I had the lumpectomy. During the lumpectomy, they also do what’s called a sentinel lymph node biopsy where they check the first however many lymph nodes are in the chain under your armpit. And my lymph nodes were negative, thank God. I was very, very lucky.
Dr. Fox: After that was done and you said you ultimately did the chemo and you had made a decision before the chemo to have eggs retrieved, like as if you’re undergoing IVF, so right away. And that was pretty soon after you delivered.
Interviewee: Very soon. It was actually…
Dr. Fox: More soon than typical, obviously.
Interviewee: It was very difficult. So, you know, luckily, I was recommended to go to a very, very good fertility specialist here in the city. When you have it’s called definitive surgery, so my lumpectomy was, like, my definitive…my curative surgery, if you need chemo, there are guidelines. It has to be within a certain amount of weeks in order to be optimal. So, you know, my body, I mean, I still had, like, a gravid uterus. Like, everything needed to, kind of, settle down before I could start medications that were gonna stimulate my ovaries. So, you know, that was difficult.
Some women are able to do more than one round before their chemo and some women not. For me, I was only able to do one round and I would say it was moderately successful. I would say, I think definitely it was not optimal because I was so close to being postpartum, but I was able to freeze a couple of embryos. So that was really, really fortunate.
Dr. Fox: Right. That’s great. And it’s great that they willing to do it, to work with you for the timing.
Interviewee: For sure. I think that in the cancer realm, especially breast cancer, which unfortunately affects a lot of young women, I feel like it’s, like, a totally different ball game. Like, if you look back even 10 years ago to now, the things that are advocated for and fertility preservation is just one of those things that is so great that it’s really stressed and they really try to do it as much as possible. I was able to freeze some embryos, and then as soon as that was over, like I had mentioned before, I got the results that I needed chemo. And then I did chemo.
Dr. Fox: How long were you doing the chemo?
Interviewee: It was three months. Four cycles. Yeah. My daughter was very small at the time. She wasn’t even 3 months old. I would say she was a healthy baby, but she was a preemie. She was very small, you know, I needed help. I needed a lot of help taking care of her and I was just very lucky and grateful that my parents were able to literally stop their lives to help me. Somebody had to work so my husband had to work. Yeah. It was not easy. Chemo was a very, very trying time. From the standpoint of being a mother trying my best to take care of my daughter, it was very hard.
Dr. Fox: Yeah. I mean, listen, it’s your first baby. You had a difficult pregnancy. You had a not difficult delivery per se, but not, sort of, what you were expecting. And you had an operation, you had another operation, you have a cancer diagnosis, you’re getting chemo. I mean, yeah, like this is a real rough time emotionally, physically, mentally. I mean, it’s just…
Interviewee: I mean, with the chemo, you have good days and you have bad days. And on the bad days, I just needed to be alone. And there were just days where I would just hand my daughter off to my mother or my father and I would say, “I can’t do it right now.” There were days where I would just hold her and cry because I just didn’t see the end for me and I also felt like this is not what I wanted for my daughter. Like, this is not the kind of mother she should…you know. I’ll never forget, I woke up one night in the middle of chemo and I woke my husband up and I said, “I need to talk to you.” He’s like, “Okay.” We get up. We sit up.
Dr. Fox: It’s never a good start.
Interviewee: Never a good start. And I said, you know, “I’ve been really thinking a lot, very hard about this.” And he goes, “Okay.” And I said, “I think we need to put our daughter up for adoption.” And he’s like, “What the hell are you talking about?” And I’m like, “No, really.” I mean, if I tell you, Dr. Fox, not in my right mind. I said, “She doesn’t deserve a mother like this. This is gonna scar her for life. I can’t hold her. There are days I don’t want to be with her, be around anybody. What am I going to be, like, after all of this? Am I ever gonna be normal? Am I gonna be able to give her what she wants? Like, this is not fair to her to, like, be in a home with somebody who’s so sick. It’s not fair. I want to give her a great life.” My husband’s like, “Go back to bed, go back to bed. You’re talking total complete nonsense right now.”
It just touches on the point of total desperation and feeling of inadequacy which ultimately my husband told me, he’s like, “This is just, like, a blip in the radar, like, of her life. She’s not gonna remember one second of it.” And if anything, when she’s older and I tell her the story she’ll really, you know, admire me and, you know…
Dr. Fox: Hopefully. When she’s a teenager, maybe she’ll talk to you.
Interviewee: Exactly.
Dr. Fox: Were you having any professional mental health care during the time?
Interviewee: No. I mean, it was offered to me.
Dr. Fox: I’m just saying. So you weren’t.
Interviewee: No, I was not.
Dr. Fox: Again, and if you were, it doesn’t mean that wouldn’t have happened anyway.
Interviewee: Also, I also want to touch on this is that I definitely don’t think…I didn’t have postpartum depression. I didn’t have the blues, like, meaning it was all situational.
Dr. Fox: Sure.
Interviewee: I felt like my anxiety or depression was completely situational because of what was going on. And as soon as I was able to really grapple with it, you know, I clawed my way out of it and I couldn’t have done it without my family and some very good friends. But ultimately, it was really my husband saying, “No, like, you are gonna do this. You will bathe her. You will feed her. You will do all of these things and you can do it. You feel fine.”
Dr. Fox: He doesn’t come out sounding too good on that statement.
Interviewee: No, I know.
Dr. Fox: You will feed her. You will bathe her.
Interviewer: No, but meaning…
Dr. Fox: You can do it.
Interviewer: You can do it. You can do it.
Dr. Fox: He’s listening, he’s, like, “Whoa, whoa.” He’s getting thrown under the bus here. He’s like, “I’m not Ike Turner.”
Interviewer: My husband is literally a saint. Anybody who knows him knows he’s the most hands-on father. He’s literally the most hands-on father. He’s amazing. Totally, I won the lottery, but…
Dr. Fox: And so when you’re saying you would give the baby to your parents for the day, you’re a parent, I’m a parent, I can tell you right now that your parents are so thankful they were able to do that because they’re seeing their baby girl suffer, and she’s in misery, and like, at least I can do this. It’s one thing I can sit in the living room and look at her all day…
Interviewee: A hundred percent.
Dr. Fox: I can do something to help her heal. Essentially, you gave them an opportunity to help, which is so important for them.
Interviewee: Yeah, 100%. It was definitely, it was needed all around. And I would say that the turning point for me was really just, like, on those good days, meaning so my parents would come during chemo days…when you have chemo, you have, like, the bad days or a couple of days after, and then you start coming out of it and you start feeling fine where it was just me. It was just me and my daughter, meaning they would go, my husband would go to work and I’d be home with her.
And the beginning, I felt like, well, what kind of mom am I? I’m just sitting here, I don’t take her out of her stroller, I don’t have the energy to push the stroller so I just sit here all day. And at first I felt like I’m not giving her enough. And then I thought, you know what? Like, this is everything. As long as we’re together. Those days that we were alone, where I was just taking care of her, even if I had no hair and I had no eyebrows and I wasn’t feeling great.
Dr. Fox: Neither did she.
Interviewee: Yeah, neither did she. And we were doing it just her and I all alone.
Dr. Fox: It’s amazing.
Interviewee: And we did it and we did great. So, you know, we grew our hair out together. It was funny. I always joked we had a competition who’s going to grow their hair first.
Dr. Fox: These are the things you look back on, obviously, and there’s all the trauma you look back on, but then there’s this, sort of, like, sweet moments at the same time. You’re three years out now. Just most importantly, how are you doing?
Interviewee: I’m doing great, good days and bad days. I think something very important to realize about breast cancer is that a lot of people think when the surgery or the chemo is over, it’s over, and it’s not. For me, because I had hormone-positive breast cancer, the treatment that I am to receive either for 5 or 10 years has some very serious side effects, which affects everybody differently.
For me, the side effects were basically pretty crippling for me, joint pain and joint stiffness from the hormone suppression. So meaning some women can take only Tamoxifen alone. Other people get ovarian suppression plus Tamoxifen or ovarian suppression plus an aromatase inhibitor. And all of those elements that suppress your estrogen basically cause, besides the menopausal symptoms like hot flashes and whatever, one of the side effects that are the most debilitating is joint pain.
And so that was, sort of, the other issue that came up for me once my chemo and all of that was over was starting that treatment because I felt like here I am, like now I’m finally able to be this person’s active mom and do all these things for my daughter to the point where I was so arthritic that I couldn’t even close her snaps on her onesies. I couldn’t button a button, couldn’t tie a shoe. I couldn’t turn a doorknob. It was painful just to hold the stroller bar. So those were all difficult things.
Then oncologists will work with you to try different modalities, to try and help with that but ultimately, it’s very debilitating. And you know, other side effects, which, whatever, I won’t go into now, but overall where I’m at right now, I’m actually taking a break from my treatment to try to have another baby. And so I can fully say that the doctor did not know what she was talking about when she told me that it will never happen for me because since then I have read, researched, talked, learned, and all of the most recent evidence, which if you’re a doctor or a scientist, we believe in evidence, we believe in science and facts, show me the data.
Dr. Fox: #science.
Interviewee: Exactly. #science. Shows that for women with early-stage breast cancer who are in their reproductive years, that after a certain amount of months on hormone suppression, it’s safe to have a baby and that it won’t increase your chance of recurrence. It may even decrease it. There’s actually a big trial going on right now called the POSITIVE trial, which is an acronym, which I don’t know…
Dr. Fox: It’s always an acronym.
Interviewee: But basically it’s pregnancy outcomes and safety after breast cancer. And so I actually want it to be in the trial. It was really important for me. I made it, like, my plan. That’s actually really what got me through a lot of my treatment was that ultimately I was going to be able to…you know, I was taking off the months of hormone suppression, the suffering and the pain that I’m gonna be able to come off my medication and try to have a baby. One more month, you know. It hasn’t all been smooth sailing, but just getting here has been amazing.
I actually was about to be enrolled in the trial, but the trial became full right before I could be in it. But I actually…you know, in this world, there are amazing people. And I actually…the head of the U.S. arm for the trial, she’s out of Harvard, and I just sent her an email one day and I was like, “What do you think? Like, should I do this? Here’s my information.” She wrote me back a whole long email.
Dr. Fox: So nice.
Interviewee: “You’re a great candidate, you should do it.” And you know, my oncologist is really supportive even though I’m not in the trial. So it’s very important to have people on your team that listen to all your goals, not just staying alive. But I would say that, you know, in life, like, I would say, if somebody tells you, you need chemo and you get three opinions and they all say you need chemo, like, you should probably get chemo.
But when it’s a little bit not as black and white, a little bit more gray, it’s so important to read and advocate for yourself. Learn, talk to other people because it’s not all cut and dry. There are so many women out there that I’ve personally met and spoken to that have gone on and had children after breast cancer. I’m not saying it’s for everybody. I’m not saying that everybody can do it. It’s, you know, don’t want to give false hope to anybody and it’s not for everybody. Not everybody’s comfortable.
There’s a risk involved in everything that you do but, you know, I would say if it’s something that’s important to you, like, I would never want to say to somebody, your dreams are not valuable. Some people would say to me when I was, you know, going through it, they’d say, “Well, you know what, thank God you have one child. You’re good. Like, at least you have one. I know you’re not gonna be able to have more, but at least you have one.” And I’m like, but that’s not my dream. Maybe to you that would be okay but just because you feel that that’s okay doesn’t mean that I feel that’s okay.
Dr. Fox: The same person probably would not say that if you had a child and then lost the child and say, “Well, you have one left.” But that’s how you view it. It’s like a loss, you’re losing the family you thought you would have.
Interviewee: Exactly.
Dr. Fox: I wanted to ask you a few things that I just thought were so interesting to get your perspective on, first from the pregnancy, now looking back. At the time you were diagnosed, was there any moment in time where you felt it’s me versus the baby? Like, or, oh, like, if we do what’s right for me, it’s bad for the baby, or if we do what’s right for the baby, it’s bad for me? Were you made to feel the way, or did you feel that yourself?
Interviewee: I think that I did have somewhat those kinds of feelings, but I think that it was more of, obviously I wasn’t in my right state of mind, but of self-sacrifice, meaning towards the end when I knew I wasn’t well. And I probably should say to somebody like, “Hey, like, my vision’s blurry,” or like, you know, say something in my twisted mind at the time. Because I was so focused on getting my daughter to a healthy place that I felt like I’m going to sacrifice myself so that my daughter can get to the end. Where in reality, that’s not the case because we would have both been up you know what’s creek without a paddle. I did feel that I would…like, give it all to me, like, give me all the pain and suffering, just don’t put her in the NICU. I don’t want to see her on a ventilator. I don’t want to see her with complications from that.
Dr. Fox: A lot of women do feel that way in pregnancy, but it usually doesn’t work out that way. Like I said, usually, if it’s not good for the mother, it’s also not good for the baby. And there’s so many layers to that. There’s also, you know, there’s, sort of, like, what you can see on the surface, but then there’s the next layer of, again, there’s your physical health, there’s your mental health, and there’s the baby. There’s all these other variables but it’s one of the times when that conflict potentially comes to the surface for people and it’s very hard for them to process that because they’re like, well, you know…
Interviewee: A hundred percent.
Dr. Fox: …then it becomes, like, guilt versus, again, competency, like, all these things. And as a mother, it’s pretty gruesome. I mean, obviously, don’t explain why it’s gruesome to get a cancer diagnosis during pregnancy but that is one of the facets. And the other thing is in terms of processing emotions, you’re at the end of pregnancy, which is a joyous time and you’re also in a very fearful time. How do those two emotions work together? You deliver a baby and what happens?
Interviewee: They don’t. They didn’t. For me, they did not work together.
Dr. Fox: Did the fear override the joy?
Interviewee: A hundred percent.
Dr. Fox: So you couldn’t really feel the joy.
Interviewee: It wasn’t actually fear, it was absolute heart-wrenching sadness. It was just sadness.
Dr. Fox: What was the first time you felt joy about having your daughter, would you say, like, true, like, I’m really happy to have her?
Interviewee: I think when we took her home from the NICU and, like, I finally got…you know, part of your birth plan. Like, I had her little outfit, which of course didn’t fit her because she was tiny. It had strawberries on it and it was just very sweet. And when we put her in and she was like, literally, like, swallowed by the car seat, she was so small, but I think my husband and I just laughed. We had a really good laugh when we looked at her and we were like, we’re, like, so proud to take her home and we felt very proud that we got her, you know, to this place. She’s coming home. She’s, thank God, healthy. She doesn’t need anything else besides high-calorie formula. And, you know, I think I really felt a big sense of pride there.
Dr. Fox: That’s great.
Interviewer: That I did it even though I made a lot of mistakes along the way. Cancer aside, but you know, personal mistakes because of my, like, emotional fragility, but we did it. So we made it.
Dr. Fox: We spoke a lot about your various…you know, your doctors and from your original doctors to the one who helped you when you were getting the biopsy and the results and everyone else. There’s this idea in medicine, you know about this, about patient autonomy, about letting people make choices for themselves, which is a great concept, but it doesn’t always work out perfectly for many reasons versus, sort of, like, just tell me what I need to do. And what was the balance you were looking for at the time and where did it work or did it not work?
Interviewee: I would say that I’ve definitely learned a lot and I’ve grown a lot. I’ve learned a lot about what it means to advocate for yourself, and it’s definitely not a simple thing like, “Hey, Dr. Fox, like, I want this.” That’s just the tip of the iceberg of self-advocacy. Self-advocacy is also reading, talking to people, getting other opinions, not necessarily feeling like there’s only one way. And I think that’s also a mindset. It’s not necessarily only the give and take between the doctor, it’s also the patient’s mindset of being able to look outside and, sort of, say like, is there another way?
So a good example for me in that respect, I would say is after my chemo, I had an option. I could get radiation or I could do a mastectomy. For me, my genetics panel was all negative, meaning, I don’t have either BRACA. I don’t have any…you know, back in the day, they only used to do BRACA 1 and 2.
Dr. Fox: You have none of the cancer genes.
Interviewee: Today, they have all these other panels, so who the hell knows, right? I don’t know, whatever, but I was negative for everything. Thank goodness. So on paper, I didn’t need a double mastectomy. On paper, I didn’t need that. There’s a big push in the last couple of years in the world of breast cancer that if you can do a lumpectomy, which is basically breast spearing, meaning the woman’s still isn’t as disfigured. She just has a lumpectomy, she has the piece of the cancer removed, she’s not as disfigured. There’s a big push for that. A lot of data came out that there was no difference in the outcomes between mastectomy and lumpectomy. That’s great. I’m all about #science.
So when it came time for me to make the decision of what I was going to do, I knew that I didn’t need a double mastectomy. We’re not in the days of, like, Angelina Jolie, right? Like, oh, you get a double mastectomy and you get a double mastectomy. I knew that I didn’t need it but something interesting that was posed to me was that if I did a mastectomy, I wouldn’t need radiation. So meaning because I didn’t have lymph nodes involved, I had a lumpectomy on the area, you need some type of cleanup. Cleanup around the area could be radiation locally to the breast tissue, or it’s a mastectomy. For me because I didn’t have lymph nodes involved, if I got a mastectomy, I didn’t need radiation.
And this is where I think for me, this is where a lot of myself advocacy came about. I really deliberated a long time. I spoke to a lot of people and read. I was 33 years old when I was diagnosed. My tumor was on the left side. The radiation that they do today is very focused. The likelihood of having any, you know, lung injury or cardiac injury is low. It’s not zero, but for me, because of my age, I was worried about long-term effects. The long-term effects of radiation come out later, like heart failure and those kinds of things, meaning 20 years later down the line. So for me, combined with the fact that I have very dense breast tissue and my breasts were very large, I felt for me that I wanted to have a mastectomy.
Dr. Fox: The fact that you were planning to have more kids, was that part of that decision also?
Interviewee: You know what, I felt like my daughter at that point was formula fed and doing great. And I felt like, you know what, like, I knew in my heart that if I did only the lumpectomy with radiation, I would constantly being biopsied, constantly being scanned because my breasts were dense and very large.
Dr. Fox: And again, you’re 33, the next 60, 70 years.
Interviewee: And I thought, you know what, like, if it’s breastfeeding, which obviously it’s sad that if I wouldn’t be able to do it in the future, but I felt like if that’s the thing I have to sacrifice for me, it was worth it. It’s not necessarily peace of mind because as the data says, it doesn’t really change your recurrence rate or overall survival.
Dr. Fox: It’s just the right decision for you.
Interviewee: It was the right decision for me. And so ultimately because of the mastectomy and issues with symmetry, I actually was approved to get a double and I was very happy about it.
Dr. Fox: You mean approved, like, insurance?
Interviewee: Yes. So the doctors were very discouraging. The breast surgeon did not want me to do a mastectomy because nobody wants to be that doctor today that does a mastectomy when you don’t need to because today, it’s considered…I don’t want to say the word overkill, but meaning there’s, that’s the trend right now to be more breast aware and breasts sparing.
Dr. Fox: They don’t want to be, you know, referred to as, like, the barbaric surgeon who’s disfiguring women, even if it’s what you wanted.
Interviewee: Right. That’s right. So that was a juncture where I could make a choice. So I had already made my choice and then I basically had to think about reconstruction of what kind of reconstruction did I want. And this is not a knock on anybody who has breast implants at all, but I think it’s very important to understand that women who have breast implants after a mastectomy, it’s totally different, both from how they look and also how they feel to let’s say a woman who had smaller breasts who wanted an augmentation. The look and feel is totally different because you don’t have that breast tissue there.
And I was just reading about, you know, women that have had breast implants after mastectomy for long periods of time, kind of, the issues that they’ve had. I’m sure you’ve heard of it, like breast implant illness, all kinds of problems that you can get with them, reactions, allergic reactions. And then ultimately, you have to change the breast implants out around every 10 years. And so, because of my age and all of those factors, and I know I’m already an allergic person based on the story, I said, you know what? I just, it’s not for me. It’s very well for somebody. It could be for somebody else, but for me, it’s not for me, I’m not gonna get breast implants. I’m not gonna…you know, breast implant illness if you’ve heard of it, it’s something that’s very…
There’s also other cancers you can get from the implants, certain types of lymphomas. I was like, I’m not going through all of this to get some other problem from a foreign body that I’m gonna elect to put in my body right now. Like, I’d rather go flat. And so ultimately, I learned about natural tissue reconstruction, which previously in the past, I would say 10 to 15 years, was reserved for women who had extensive radiation on their breasts who the skin couldn’t tolerate an implant, meaning the skin wasn’t…
Dr. Fox: Stretchy.
Interviewee: …stretchy or pliable enough, and their only option was to get a natural tissue reconstruction. But as the data has evolved and new information has come out about, you know, women after mastectomy having problems with breast implants, more women are electing to do natural tissue reconstruction. Ultimately, that’s what I chose. It’s not, like, a simple procedure at all.
Dr. Fox: It’s not a walk in the park.
Interviewee: It’s not liposuction, it’s not like a Brazilian butt augmentation, you know, it’s not just liposuction. It’s actually, you have to go to a specialist called a microsurgeon, basically resects part of your body. For me, it was my abdomen, my stomach. They resect the arteries and they connect them to the arteries in your chest because the tissue can’t survive without profusion. And if you don’t go to a good enough specialist or sometimes just bad luck, the transplant can fail. You can end up with one and then you have to try again with another source.
So my doctor, I think, thought I was, like, a nut, you know, that I was gonna do this surgery when I didn’t necessarily have a clear need, like meaning I didn’t try a breast implant and fail. But ultimately, I knew in my heart, it was the right decision for me. It was a very long surgery. It was 12 hours. I really had to advocate to get to the plastic surgeon that I wanted, who was absolutely phenomenal and amazing, changed my life. Like, a mensch, bar-none. It was the best decision for me. I would advocate for that surgery for anybody who even might be in this situation or thinking about it. There’s nothing like the feeling of having your own tissue.
Dr. Fox: Right. This mindset, has that changed how you think as a doctor or how your husband thinks as a doctor?
Interviewee: A hundred percent. Just going back to the words, just words are so powerful, much more sensitive to things of this nature. I know he gets particularly affected when he treats women who are breast cancer patients. Just a lot of sensitivity there.
Dr. Fox: What about in terms of, like, autonomy and giving patients choices? And do you think differently about that as a doctor?
Interviewee: Not to say that I’m, like, the greatest doctor ever.
Dr. Fox: You are.
Interviewee: But I would say that pre my diagnosis, I always said, I learned from one of my mentors, like, every doctor knows their limitation. Every doctor also needs to know when to say let’s get another opinion. And the doctor whose ego is so big that they can’t stop and do that probably is not the right doctor for you.
Dr. Fox: I believe that so strongly.
Interviewee: Yeah. And I would say that I’ve never had a problem saying, like, pump the brakes, let me get somebody else involved to help us out here. But I would say even more so now I really try to ask the questions to the specialist who it’s directed at because people generally have a lot of opinions and feelings and things they’ve seen, but I try to really direct my questions to the appropriate specialists.
Dr. Fox: I asked you how you’re doing overall, but I’m curious in terms of one specific thing, you know, your birth, obviously, thank God, your daughter is healthy and you’re doing well, but obviously, very traumatic experience to go through. And this is something that’s come up before on the podcast that even when the outcome is good, the event is traumatic and that itself is something from which you need to recover, so to speak. Where are you in that in terms of, like, the trauma and thinking back on it, you know, how are you now compared to then, what do you think is going to be moving forward? I’m just really curious to hear your thoughts on that,
Interviewee: Because my journey was really situational, meaning around a certain…my trauma, I should say, was based on somebody else. Me hearing somebody else dictate my reproductive future. I think for me, when I have another child, I think it will be very restorative for me. And I know that seems like very, like, cut and dry, like, I’m not healed until I have another child. That’s not the case. The fact that I’m already here on this journey and have seven specialists behind me that are rooting for me, for me, I already feel that I’ve crossed the finish line, but ultimately I feel like what I really would like to do is, God-willing, have another baby and walk into the surgeon’s office, “Hi, remember me?” Just kidding.
Dr. Fox: Was there a point, you know, when you couldn’t even tell the story because it was just too painful? I would imagine it takes a long time to even talk about it.
Interviewee: I mean, there’s a lot of shame also. I mean, I think depending on where you come from, also community, whatever your background is, your involvement, I think there are stigmas and taboos around talking about these things. And I would say initially I was much more reserved, but I’m definitely not as so, meaning I am involved in groups, I talk to other women, I made myself available to be…like, meaning through my doctors, they know that they can have their patients reach out to me if they want to talk about anything or have any questions.
It was actually a big part of how I got here because through my plastic surgeon, I met a woman that was on the patient referral list who told me that she’s had three children after her breast cancer. And she was like, “Just stick to the plan, like, stay positive. This is just temporary and you’re gonna get through it and you’ll have everything you want.”
Dr. Fox: Last thing I want to ask you today, we’re going to talk many, many more times than before, but today, looking back on this whole thing, global view, where you are now going all the way back then, what have you learned about yourself and what have you learned just about life in general, like the big lessons that you know now that you didn’t know then?
Interviewee: I would say pre-cancer, anybody who knew me always knew that I was, like, the get-it-done person, meaning like, if there was an issue that came up, if there was anybody that could do it, they could call me and I could solve the problem. I can make whatever it was happen, happen. That’s an element of being, like, very type A, very aggressive, very organized to, like, a fault, overly so, and also overly controlling. I don’t want to say not controlling in my relationship, but controlled every aspect, like, of life to the most minute detail. And I think going through all of this, I’ve really had to, like, let go a lot. It also comes back to also, like, being the provider and the patient, I have had to learn how to be the patient, and I think I’ve really come a long way with that where I can just sit in the doctor’s office and just be the patient.
Dr. Fox: We’ll find out.
Interviewee: You’ll find out. I’ve sworn up and down to every doctor. I’m like, “I am a changed lady. I will be the best patient you ever had.”
Dr. Fox: You were a great patient. You’re giving yourself a lot of a, you know, bad rap. You were a great patient going through something really horrible. You were always kind. You were always thoughtful. You were always asking the right questions. You were ideal. You were just going through a horrible thing. So yeah, you’re an emotional wreck, but you should be an emotional wreck. It’s an emotional wreckage that was happening, but no, you were a great patient.
Interviewee: Thank you. No, but I just definitely think letting go of some of the aspects of control and letting somebody else take care of you, trusting in that, having the ability to let go and say, “You decide.” That’s that balance between autonomy and not because at some point you’re tired, at some point you just want to say, just like, take it from me and just tell me what’s the right thing to do because your brain just gets so tired from constantly having to be three steps ahead when you’re fried, you had chemo, you had this, you had that, and you’re brain’s always, you know, what’s the next move, what’s the next move, but you’re tired. So I’ve learned a lot.
Dr. Fox: Well, I’m inspired by you. I think that you’re amazing. I think that what you went through was so huge and so difficult, but you handled it…honestly, yes, it was very difficult at the time, but you know, it’s been a while, we’ve known each other a while, with such grace, actually. And the fact that you’re willing to talk about it for a really long time, you know, which is great. I think that it is, A, just on the face of just interesting and fascinating, people will hear it and say, “Wow, like, I’m a better person for hearing the story,” but there’s women out there who are gonna hear this and it’s going to resonate with them personally. Obviously, if it’s exactly the same thing or just close enough and the same emotions and it’s important, like you said, to tell your story. It’s for you, and it’s for me, and it’s for people who listen, and it’s just really profound and I just appreciate you doing it.
Interviewee: Thank you.
Dr. Fox: If you’re interested in telling your birth story on our podcast, please go to our partner website at www.healthfulwoman.com and click the link for sharing your story. You can also email us directly at hrbs@highriskbirthstories.com. If you liked today’s podcast, please be sure to check out our “Healthful Woman” podcast as well, where I speak with the leaders in the field to help you learn more about women’s health, pregnancy, and wellness. Have a great day.
The information discussed in “High Risk Birth Stories” is intended for informational and entertainment only and does not replace medical care from your physician. The stories and experiences discussed in our podcasts are unique to each guest and are not intended to be representative of any standard of care or expected outcomes. As always, we encourage you to speak with your own doctor about specific diagnoses and treatment options for an effective treatment plan. Guests on “High Risk Birth Stories” have given their permission for us to share their personal health information.
