June 15, 2022

Two Nurses Turned Patients: Author Theresa Brown, RN & Natasha Curry, NP

Two Nurses Turned Patients: Author Theresa Brown, RN & Natasha Curry, NP

As a nurse, you never truly understand the level of terror your patients are experiencing until you become one yourself. New York Times best-selling author Theresa Brown, RN, shares her breast cancer treatment journey along with details about her new book, “Healing.”

As a nurse, you never truly understand the level of terror your patients are experiencing until you become one yourself. New York Times best-selling author Theresa Brown, RN, shares her breast cancer treatment journey along with details about her new book, “Healing.”

Diagnosed with breast cancer in fall of 2017, Theresa underwent a lumpectomy and four weeks of radiation before starting Tamoxifen, which ruined her life for three and a half years before she quit. With our Season 2 Breast Cancer Stories co-host Natasha Curry, we uncover similarities and surprising differences in treatment as nurses-turned-patients.

We were shocked to discover that like Kristen and Natasha, Theresa’s breast cancer was missed by mammography and was only discovered because she was participating in a study in which women also received an ultrasound to see if it gave better diagnostic results.

Theresa has been a contributor to the New York Times, and her words can be found on CNN.com, in the American Journal of Nursing, the Journal of the American Medical Association, and the Pittsburgh Post-Gazette. She’s also been a guest on MSNBC Live and NPR’s “Fresh Air.” She received her PhD in English from the University of Chicago. Theresa lectures nationally and internationally on issues related to nursing, healthcare, and end of life.


NY Times: A Nurse Finds Herself on the Other Side of the Equation — as a Patient

Buy Theresa’s book on Amazon

Other Links

Support the Breast Cancer Stories podcast

Win your own Kyte bamboo pajamas when you SUBSCRIBE TO OUR NEWSLETTER! Sign up here: https://breastcancerstories.substack.com/subscribe

Meet Kristen’s doctors: surgical oncologist Dr. Louis Rivera, hematologist and oncologist Dr. Sonia Ali, plastic surgeon Dr. Salvatore Pacella, and radiation oncologists Dr. Anuradha Koka and Dr. Kenneth T. Shimizu.

About Breast Cancer Stories

Breast Cancer Stories follows Kristen Vengler, a 56 year old single empty nester in San Diego, from her diagnosis of hormone positive breast cancer through chemotherapy, mastectomy & breast reconstruction, radiation, and whatever happens after that.

In 2020, Kristen moved from Austin to San Diego to be near family and start her life over after a life-shattering workplace trauma. A few months later she had that terrifying moment in the shower we all hope we never have.

From her breast cancer diagnosis, through chemotherapy, breast reconstruction, and radiation, we experience each new milestone as it happens. This podcast is about what happens when you have breast cancer, told in real time.

Host and Executive Producer: Eva Sheie
Co-Host: Kristen Vengler
Editor and Audio Engineer: Daniel Croeser
Theme Music: Them Highs and Lows, Bird of Figment
Production Assistant: Mary Ellen Clarkson
Cover Art Designer: Shawn Hiatt

Breast Cancer Stories is a production of The Axis.


Special Guest: Theresa Brown.


Eva (00:08): This is a story about what happens when you have breast cancer, told in real-time.

Eva (00:17): Hello, we are here today on Breast Cancer Stories to talk about a new book by Theresa Brown, called Healing. I'm Eva Sheie. With me today, of course, are Kristen, my co-host.

Kristen (00:28): Good morning.

Eva (00:28):

New Speaker (00:30): And also with us is Natasha, who's telling her breast cancer story on the second season of Breast Cancer Stories, which will begin later this summer. Good morning, Natasha.

Natasha (00:40): Hi, good morning everyone.

Eva (00:42): And if you haven't heard the trailer for Natasha's story, that's live. You can go back and listen and hear what that story's going to be about. And so our guest today on Breast Cancer Stories is Theresa Brown, and Theresa is the author of the New York Times best seller, The Shift. She's been a contributor to the New York Times, and her writing appears on cnn.com, in The American Journal of Nursing, The Journal of the American Medical Association, and the Pittsburgh Post Gazette. And she's been a guest on MSNBC Live and NPR's Fresh Air, my favorite. I'm not Terry Gross, I just try to be in my imagination. Theresa's first book was called Critical Care, and during what she calls her past life, she received a PhD in English from the University of Chicago. She lectures nationally and internationally on issues related to nursing, healthcare, and end of life. Welcome Theresa. Thank you for being here.

Theresa (01:40): Thank you for having me. I'm excited.

Eva (01:43): Let's start with your timeline a little bit, and set the stage. Your book just came out in the beginning of April, but when did you actually go through breast cancer? Can you just tell us a little bit about your treatment journey?

Theresa (01:56): Yeah, so I was diagnosed in fall of 2017, and I remember it so well, not just because it was cancer, but because my twin daughters had both just started college, at University of Pittsburgh. So it was supposed to be okay, we have no more kids in the house, now I can really think about, do I want to write more? Do I want to do more clinical work, or do I want to be a breast cancer patient, that was not on the schedule, but then it was. So fall of 2017, I had a lumpectomy, four weeks of radiation and then started on Tamoxifen, which I then quit after three and a half years.

Natasha (02:39): Ooh, we're going to have a conversation about that.

Theresa (02:45): Yeah. So Tamoxifen basically ruined my life, but it wasn't until I went off it that I figured out, I knew it was bad, the tiredness and the brain fog, and just for people listening, many women have these symptoms. I mean, I was committed. I'm doing Tamoxifen for five years, that's it. And then they thought I had gone through menopause, which meant I could switch to a different kind of drug called an aromatase inhibitor. And that's why I went off Tamoxifen. And it was when I went off it, I suddenly realized how much of myself I had lost to the drug. And then for the book, I started researching that and found out some numbers are as high as half of women who are supposed to stay on Tamoxifen for five years don't. And it's just amazing to me that no one ever said anything like that to me, no one ever said, this can be a tough drug. They talked to me about blood clots. They didn't talk to me about any of these quality of life issues.

Theresa (03:51): And then just kept having these regular appointments to make sure I was taking it, which made me feel like a child. For me Tamoxifen was far in a way, the hardest thing about my treatment, surgery, surgery, it sucks and you get better, and radiation did not make me tired in a way that it does a lot of people, but Tamoxifen was terrible.

Kristen (04:15): Shocking. Right?

Theresa (04:16): Yeah. And so now I'm actually not on anything, because it turns out I wasn't actually in menopause. Yeah. And this is important for listeners, because none of this was told to me in any kind of way in advance. So I was never told, oh, I might come off Tamoxifen. And then, oh, it could be that I wasn't actually in menopause, it just looked that way from the labs. And my oncologist said, "Well, you're just going to have to go back on Tamoxifen." And I said, "I will not do that." Then they said, I could stay on the aromatase inhibitor, but I would also need to take this shot, which I got one of that causes a variance suppression. And they said, or you can just have your ovaries removed. It's just outpatient surgery.

Theresa (05:03): I think the really terrible thing was if they had presented all this to me, when I just finished radiation, we could also just have your ovaries removed. At that point I might have felt like, okay, that's all right. Then I don't have to worry about ovarian cancer. I don't have to take this drug, but to bring that up after I suffered through this drug for three and a half years, gotten this shot that made my blood pressure shoot through the roof. None of that makes sense to me. And none of it is about informed consent or giving people their choices and telling them here's what makes sense. Here's what we usually do. Here's what we'd suggest. So you know that half of women who go on Tamoxifen go off it before the five years. Why is the plan always then let's just assume it's going to work out? That's a terrible plan, completely unsupported by data.

Theresa (06:00): And that's really the bigger picture point in the book that we're now in this system where my sense is nurses and doctors do really care about patients, they want to do a good job, but they are so compelled to work on what's euphemistically called throughput, which I can't believe human beings get described that way, what's your throughput in the hospital? Which means how quickly do people come in, get the care they need and leave. We've created this system in the interest of certain entities, making a lot of money off of healthcare. And so the thought of, what really makes the most sense for patients gets very much short shrift a lot of the time.

Kristen (06:48): I think a lot of it is driven by fear, with patients we figure that we just want this to go away.

Theresa (06:56): Right. And so it's easy to fall into, I'm just going to do what I'm told. I'm just going to take my seat on the assembly line, like a little breast cancer widget, I'm going to get fixed. And then I'm going to be done. It's going to be over. But the problem is there may be issues with the fixing. The fixing may not quite work for you. The fixing may bring up things you didn't expect, not just for breast cancer patients, for all cancer patients, for patients with COPD, for patients on heart failure, caring for a human body is complicated. Bodies are mysterious and idiosyncratic. And yeah, we would like to think it's as easy as getting on an assembly line and having someone give us [inaudible 00:07:48] of oil and use the wrench a little bit, but it turns out it's never that simple because we're human beings and we have thoughts and feelings and strange reactions sometimes to things.

Natasha (08:01): I guess that leads me to a couple of things. Just the fact that your book exists, I really want to thank you on so many levels. I think it's a very important book for patients and families to read. The parallels between the two of us were uncanny. I'm a nurse with breast cancer, I'm a nurse practitioner. I'm an English major. I've worked in palliative care, which is what I was doing before I was diagnosed. I've also worked in bone marrow transplant. And my father is a writer who keeps saying to me, "Write a book about the experience of a nurse being a cancer patient." You've done it for me. So thank you for saving me the time of having to do that. And I'm really curious about, if you feel that that you were treated differently as a nurse patient as opposed to a non-nurse patient. I have my own thoughts and feelings, but my journey is very new. I've only been in the system for maybe six or seven weeks, but I'd love to hear how you feel. You maybe get treated differently and maybe behave differently as a nurse patient.

Theresa (09:08): It's weird, but I did not feel like people saw me as a nurse and hear someone who knows what's going on, or if they did, they didn't acknowledge it. I didn't want to go in and say that, because I didn't want to be treated differently. But then with things like, oh, we're having these regular appointments every three months, I was supposed to come in to make sure I was taking Tamoxifen, was the reason given? And then that bothered me because I thought, well, I'm a nurse. If I quit a medication, I would tell you. At first, I would never just quit. I would talk to you about it. So for the most part, I was glad I was not treated differently, but at times it was problematic because I felt like they just didn't see me as someone responsible. Maybe they just weren't good at seeing people as being autonomous and wanting to manage their own care.

Natasha (10:06): So I'm being treated at the hospital system that I work for. Is that the case for you or were you able to be a little more anonymous?

Theresa (10:14): I was in the same system, but I deliberately got treatment at a different hospital, because I just didn't want that. I didn't want to run into people I knew and have them saying, oh, why are you here? And that's just me wanting more of a zone of privacy around myself. I did an interview on Saturday and the guy said, "Well, I would want everyone to know who I was." So for example, I got in to see the surgeon much earlier than I think I might have. And I think my friend made that happen, but he never told me that. And I'm so thankful. I think someone else also pulled some strings from me. The problem is I didn't want any of that, because I felt like it really needs to be the same for everyone. We should just have a more responsive system. So in some ways I think other people were using their influence to help me.

Natasha (11:10): That's really interesting. That's something that I struggled with a lot at the beginning. Other people helping pull strings, but just, I knew the system, I knew the oncologist, I emailed the oncologist that I knew was who I wanted. And I identified myself as a colleague and she said, "Of course, I'll take you." And then I felt guilty for that privilege of being able to do that, when my PET scan wasn't being scheduled on time and I just called radiology and said, "I need it moving up."

Theresa (11:37): Wow.

Natasha (11:37): I was the patient from hell at the beginning because things weren't happening. But as we all know, you have to advocate so strongly for yourself, especially at the beginning when nothing is making sense to anyone.

Theresa (11:49): And yeah, that's calling yourself the patient from hell that... Because I, at one point in the book realized, oh, I am the "difficult patient." And it's terrible that we label people that way, but we do. And I tried very hard not to use those labels, but I'm sure I did. And the difficult patient, once I had this recognition and I felt embarrassed, I picked it apart a little bit and realized the difficult patient is really just the person who says, why do I have to wait two weeks for this? I don't understand what you're saying to me. This is hurting me. And you're not telling me why. And I feel like, yeah, well, if you have to be the patient from hell, or the difficult patient to get people to do things in a timely manner, then that's what it takes. And the point is it shouldn't take that.

Natasha (12:43): Yeah. I work at San Francisco General Hospital that's a safety net hospital. So we have a lot of non-English speaking patients. And just the thought of trying to navigate the system, using a Cantonese interpreter who may or may not really understand, or a family member, how on earth you navigate that is beyond me. It blows my mind that any of my patients actually ever get to treatment, given that I'm a nurse practitioner who works in the system and speaks English and speaks the medicalese language. It was challenging for me. And I think what I found, as a nurse going through the system, is that I feel like I often get, when I meet with the oncologist or the oncology nurse practitioners, that I get half a story because they assume I know the rest. So I've never quite been allowed to step into that patient role. I feel like I'm always seen as the nurse patient.

Natasha (13:38): And so it'll be like, oh, we're going to do X, Y, and Z, but you know this, or, oh, have you looked at your labs? Do you have any questions? Well, yes, I can interpret labs, but I'd like to not have to think about how much magnesium I need repleting on. Please just let me sit back in the chair and take care of me. It's been a challenge. And I think, as nurses we're such a huge part of the workforce, there must be a lot of other nurses going through this. So any oncologist listening, please let us be a patient. And if we stop being too much of a nurse, tell us to shut up.

Theresa (14:13): Yeah. No, that's a great point. And I did wonder that. Are they not, as you say, completing their sentences because they think I know what this is, that I know what a lumpectomy is, that I know what goes into getting chemotherapy. And no one ever said, you already know this, or I don't have to tell you this because you're a nurse. But the thing for me was that as soon as I got diagnosed, I forgot everything I had ever learned about breast cancer, but basic things like staging and tumor markers, and I just could not remember a damn thing, which was really unsettling. So, that's that fear.

Theresa (14:54): And it made me really want someone to sit down with me, 15 minutes, look me in the eye, here's what we see, here's what we're worried about. You're going to be okay. And that never happened. But I agree with you that you need to be able to be the patient. It's not fair to ask you to look on as a professional at your own life and disease process. It's really, really hard. And we know according to data, we shouldn't have our friend be our surgeon, for example. So why should you have yourself be your own nurse practitioner?

Kristen (15:37): That's great. I love that analogy. Yeah. To insert my middle school, Brene Brown brain on this, my kids couldn't learn when their amygdala was firing, when your emotions are in the forefront, you can't make good decisions. You cognitively, you can't do what you need to do. And so that's what's going on for you guys as for nurses, as patients. For all of us as patients and your nervous system, when it's overwhelmed, it can't function. And how is it not overwhelmed as a cancer patient? You're sitting in that place where you've had so much empathy for others.

Theresa (16:16): Yeah. And that was the biggest and the earliest lesson for me. So here I am, I have this tumor, it's caught on a follow-up ultrasound. I never felt it. It's small. It's slow growing. And I'm only spelling all this out, not to say, oh, I barely even had cancer. The point is I could have taken a lot of reassurance from those facts. And at some point I did, but I was terrified. You hear the word cancer and it's terrifying. And I knew that women died of breast cancer, because I'd taken care of women who were dying of breast cancer. I was terrified. As a nurse I never really understood the level of terror my patients were experiencing. And I admit that you can't expect people to come to work and have a hundred percent empathy with mortal terror every single day or they'll burn out in six months.

Theresa (17:18): But it seems like we could have more empathy without it also taking away our own resilience. It could become incorporated into professionalism. And instead of saying, when patients complain, not that I would say this to them, but to myself, will we say, oh, she lost her hair, but we saved her life. Chemotherapy gave him such bad nerve damage in his feet that it's hard for him to walk, but we saved his life. And, of course, it's great that we saved his life, but not being able to walk is huge. Losing your hair for some people is incredibly traumatic. And my ability to understand that and empathize with that. And the other nurses I worked with too, and the physicians got really compromised by this focus on, well, we're being the heroes here, we're keeping you alive. We're taking care of your disease. That is great. But what about that person's soul, their humanity, their sense of individuality, not so good at that.

Natasha (18:27): I actually attempted to work for the first few weeks after my diagnosis while the treatment plan was percolating and nobody knew what stage I was, I was still waiting for things and I can remember having a new patient referred to me exactly the same stage. Oh no, I had been staged. I don't know why I was still working. I was being an idiot. Complete same stage as me about the same age, same treatment plan ahead that I was looking for. She weighed about 78 pounds. She was bald, her skin and bones. And I can remember seeing her barely able to walk, but pushing that damn pole around with her chemo and looking at that and then expanding my gaze to look at all the women in the clinic that I generally just looked at as numbers who were coming in on my schedule. And suddenly I looked at all these women and I think, A, we are freaking amazing, but B there is so much suffering that goes along with this, that it just isn't really acknowledged on the humanistic level.

Natasha (19:31): Back to your point, it's like the 78 pound lady, they were thrilled because her tumor was responding to the treatment. You can't live at 78 pounds, I don't know what the plan was, but just, I had just such love for women as a community. And I did not last at work very long, I couldn't, when I noticed in the book you realized you couldn't do hospice work with your diagnosis. And I just, I couldn't do palliative care with cancer patients until I'd figured my own framework out. Maybe at a certain point, I'll go back, I'm still struggling with the side effects of chemo. But yeah, I think the terror doesn't get acknowledged enough by oncologists even, I think it's like, yay, the thing in your liver shrunk from 1.9 to 1.7 centimeters. Well great. But you haven't been out of bed for a month. It's challenging. I would not want to be a medical oncologist. I think it must be a really challenging job.

Theresa (20:30): Yeah. And to speak to what you're saying, some women, of course, have to keep working financially. Some people keep working because they get a lot out of it. But I remember one of our IV nurses came in one day and her head was shaved, I think she had a little bit of hair and was wearing a baseball cap. And I said, "Oh, you look so cute. It's a new look," because she had had this really long, thick, curly hair. And she said, "Yeah, well, Theresa, I was just diagnosed with breast cancer and decided to just cut my hair off."

Theresa (21:00): And she worked all through it and I never asked her, "Hey, what's this like for you?" And it's part of the problem too, with this country, we are so paranoid about people being malingers and actually paying for people while they're sick. And this whole idea that, well you should just come to work sick. Can you imagine what if I'd felt like, well, financially I have to keep working. I wouldn't have been able to be there for people. It would not have been good for me, but it wouldn't have been good for them either.

Natasha (21:38): Oh no. I knew for the first and again, I'm only a couple of months into this journey. I would've been playing out my own process with my patients. I would have had a struggle. I would either over cared and we'd all be crying and it would be, just completely useless for anyone, or I would've made it all about myself and projected my own process onto them. So yeah, I feel very lucky again that I'm able to not work through this, but I'm aware that when I go back to work, I'm going back with a very different framework on what cancer does to people. And I'm actually looking forward to that. I think it's going to make me a much, much better palliative care nurse.

Natasha (22:23): So can I ask you to talk a little bit about that really interesting philosophy that you brought up about wondering whether taking care of patients means that you, not brought it on yourself, but you gave it an opening to come into your own life. I'd never had somebody put words to something so perfectly, but there's a little bit of me with my own journey like, well, it's fatalistic. It's like, of course I'm going to get breast cancer because that's the world I've been working in for so many years, but I'd love to hear your thoughts around writing that sentence.

Theresa (22:56): Yeah. And I'll give the background, for my PhD, one of the authors I wrote about was this indigenous American named Leslie Mormon Soko. And I don't want to give too much away about this story because it's a great story, but there's an indigenous American character in it who believes this bullying, racist police officer is actually an evil spirit. And at one point he says to even talk about something like the cop, that's what he called it to him, the cop was an it not a he, to even talk about it, risks bringing it closer. And this is the way my mind works. I would sometimes think that at work because there's a lot of cancer in my mom's family and I wondered have I made a mistake by doing this mostly idle, I'm not a superstitious person. But then when I was diagnosed with breast cancer, bam, that just hit me full in the face. Did I do this to myself?

Theresa (23:57): And I worked through that and decided that's ridiculous, but it was a profound fear that instead of running toward what I was afraid of to try and make peace with it, I should have just run from it and kept running. And maybe the best thing I can say about that now on reflection is as this is the theme today, our fear drives us. And if your fear's pushing you somewhere to try and learn more about something, or get more comfortable with it, it doesn't mean that you're asking that fear to take over your life. At some point it just may mean that something similar and scary can happen at the same time because that's the way life works.

Natasha (24:55): Yeah. That's really interesting, because I also see you, you go on to question this idea of illness and disease and cancer as a sin in a way. And I do remember the days when my mom's generation was getting breast cancer and it was definitely done with a side hand and I still have friends who will ask, is it okay if I talk about your cancer with other people as if it's... And I've been very, very open from the beginning. One of the things, if I could do anything, was to de-stigmatize this as a disease for women, but do you find that it's still considered a sin and something that we're to be ashamed of, or do you think we're moving beyond that a little bit?

Theresa (25:37): I think we've moved beyond that. And certainly I never got that feeling from anyone. You probably know this too, but cancer patients used to be ostracized because people thought it was contagious. Personally for me, I felt a little weird writing a book where my right breast comes into the book a lot, and I never imagined that, or that I would be on podcasts, or at book events and talk about whether or not I'm in menopause. Before I became a writer, I would not have done things like that. But now I feel like it's all in service of the larger purpose, which is to say, we need a more caring healthcare system, but there is that feeling, cancer is evil. And then you cross over into this cancer is a war and you need to have a war back with cancer. And I actually just had a very close friend, just died last week of bladder cancer.

Theresa (26:42): And even in my head, I hear myself saying she lost her battle with cancer, which I never say things like that out loud. I hate that language. I don't know why it's now popping into my head, but it just shows how pervasive that imagery is. So it seems like we've left the evil behind, but we're still very stuck on the militaristic images of that's how to treat cancer. I was just in St. Louis doing an event and a woman at the end said, her doctor told, this is the kind of thing you're just like, what? Her doctor told her, "Okay, the place it's most likely to come back is brains, bone, liver." There was one other body part. And she said, she just hears that in her head all the time. And that she said to her doctor, "How am I supposed to know?" And uh he said, "Well, you'll just know."

Kristen (27:43): We have been having this conversation.

Theresa (27:48): Diagnosis by telepathy these days, I think that's-.

Kristen (27:52): Well, I have 17 comments right there, as usual, but we were having this conversation in talking about chapter 10 with your mammogram, because I've been told because I have no more breast tissue, and mine was a skin saving mastectomy, but because I have no more breast tissue that I don't have any more mammograms. Yeah. And there was a friend of mine whose wife's second round of breast cancer was found because she had one breast that was still intact and the other not. So she had a mammogram with the one that was still intact and just said, "For the heck of it, can you look at the other one?" And there was breast cancer on the chest wall. And I know. So anybody listening, Theresa's mouth is open-

Theresa (28:39): Yes.

Kristen (28:39): ... To where we can't even see the bottom of it on the Zoom.

Theresa (28:42): Yeah.

Kristen (28:45): And so, along with all of this, I've been told that I have scans when something bothers me and to let them know, and that the literature and the research doesn't show that there's any advantage to scans versus aches and pains.

Natasha (29:05): So one of the things that we've been talking about a lot on the podcast and offline between the three of us is just how many people we're hearing actually had a mammogram that missed the cancer. That was my situation, even when they knew the tumor was there, they would send me back into the mammogram machine and it wouldn't show up.

Theresa (29:23): Oh my gosh.

Natasha (29:24): And we noticed that you had a mammogram and an ultrasound, can you explain how you managed to get both at the same time?

Theresa (29:32): Yes. I was part of a study that was looking at, if you add an ultrasound with mammography, do you get better results in terms of diagnosis? And the weird thing to me is they found out that it doesn't actually improve diagnostic results. Although for me, they wouldn't have seen my tumor without the ultrasound, because it's actually in a really hard place to see. And after I had the ultrasound where they were pretty sure they saw cancer, they wanted me back in to get a mammogram. And it was really hard to angle the right way for them to get it. And of course, I had tears running down my face, just another terrible moment where I wish the technician had in some way acknowledged what I was going through. It would've really made such a difference. But yeah, so I was part of a study.

Natasha (30:24): So do you think without the study, it would've been a very different story for you?

Theresa (30:30): I do think so. And that's one of those what ifs I am just not comfortable thinking about.

Natasha (30:38): And it's interesting for us on the podcast now, there's three out of three whose tumor did not show up on a mammogram. I was so called "lucky enough" that mine actually triggered an enlarged lymph node in my armpit, otherwise I would've gone for my mammogram, they would've said no sign of anything. You've got dense breasts, follow-up in whatever. End of story. Meanwhile, there's a tumor happy growing on the right hand side of my breast. It leaves a big question as to, I don't know for you, I don't like mammograms. There's a certain smugness after I've had a mammogram, it's like good, good girl. You were a grown up, you went for a mammogram, but it's not actually finding the disease. It's a little terrifying.

Theresa (31:18): That is terrifying. Yeah. And until you said that, I had never quite put it together that yeah, the mammogram didn't find it. That's probably another one of those things I don't really want to think about.

Natasha (31:32): No. Some of my oncologists had said to me, that enlarged lymph node saved your life.

Theresa (31:37): Wow.

Kristen (31:38): Well, and to pipe in here, everybody who's been listening knows my story, but mine had to come out the skin as a straight stage three before it showed up. And see there's your jaw again, it was because it was right behind the nipple and I had dense breasts and had, had everything checked and only on an MRI, did it show up, did the mammogram, did the ultrasound, went back in for the mammogram right after the ultrasound. The only reason I was referred for a biopsy is because it came through the skin. It wasn't Paget's, it was regular stage three breast cancer. So that leads into my question about, did you have a situation with dense breasts also like Natasha and I?

Theresa (32:21): Yes. And actually listening to the three of us, I'm now wondering if there need to be different protocols for women with dense breasts. That's what it sounds like.

Kristen (32:31): Agree. 200%. That's one of the things that I'd like to stand in front of Congress and go MRI, MRI.

Theresa (32:38): Yes.

Kristen (32:38): I know literally, because there's some graphics out there that show you what a tumor looks like on dense breasts mammograms versus a regular mammogram, versus a regular ultrasound. And so that was one of the things that I was curious about is the protocols and your thoughts being, hate this word, on the other side, or this term, on the other side, and with your expertise and with the work that you do, your thoughts on that.

Theresa (33:08): Yeah. That actually, I'm happy to be called upon on being on the other side because that's interesting. I had never really put together that, like I said, my mammogram would've missed that. As a nurse, I was very aware of nothing's perfect, nothing's a hundred percent, people can have all different reactions to things. And it sounds like though, I need to really rethink that for patients and in terms of communication with patients. And the real question for me is also why can't we talk about things on a continuum. Everything has to be very much mammography works, it overworks, but why can't we say the majority of women, it's great. There may be other women who need more, who need an ultrasound and who need an MRI, or who just need an MRI? And then that's when we get back into this whole loop of people making money off the system and gaming the system and well, let's just have every woman get an MRI because then the hospital, they'll have two MRI machines. They'll be constantly using their MRI machine. They'll make so much more money off that machine.

Theresa (34:17): That's not the way we should be thinking about healthcare. We need to think about everyone is not the same. And so can we parse these groups of people? And then how do we treat them the best?

Kristen (34:32): Completely agree.

Natasha (34:34): I want to close with, I have four questions, but I'm going to have to pick the best one. It seemed to me throughout the book that you mentioned a lot of other books that you love. So I'm surmising that you are a big reader.

Kristen (34:47): Yes.

Natasha (34:47): And I want to ask you what you're reading right now.

Theresa (34:51): Oh my gosh. You know what I'm reading? Agatha Christie's Murder on the Orient Express.

Natasha (34:56): Old school.

Theresa (34:58): Because we just saw the play version of it and I've never read the book and I love the story and I felt like, okay, I just want to read this book.

Eva (35:08): Are you going to write another book someday?

Theresa (35:11): I hope so. Yeah. Don't know yet what it'll be about, but-.

Eva (35:15): So your five's probably coming up on six years out from your own breast cancer.

Theresa (35:22): Coming up on five. Yeah.

Eva (35:24): What would you tell others from your seat in the future?

Theresa (35:28): It will get less scary. Don't let anyone give you a timetable for that. And keep speaking up.

Kristen (35:39): Check, check, and check.

Theresa (35:41): Yeah.

Eva (35:43): Thank you so much.

Kristen (35:44): It has been so nice getting to know you.

Theresa (35:46): Yeah, this was great. Good luck to both of you.

Kristen (35:50): Thank you. Thank you. You too. You too.

Natasha (35:52): Thanks Theresa.

Eva (35:55): Thank you for listening to Breast Cancer Stories. To continue telling this story and helping others, we need your help. All podcasts require resources, and we have a team of people who produce it, there's costs involved and it takes time.

Kristen (36:10): If you believe in what we're doing and have the means to support the show, you can make a one time donation, or you can set up a recurring donation in any amount through the PayPal link on our website at breastcancerstoriespodcast.com/donate.

Eva (36:24): To get the key takeaways from each episode, links to anything we've talked about and promo codes or giveaways from our partners, sign up for our email newsletter. If you've been listening to us for a while, you know we are cynical gen-Xers who approach everything with a healthy dose of skepticism. So you can also expect that from us in our newsletter.

Kristen (36:44): You'll get notes and thoughts from me related to each episode and links to the most useful resources for all the breast cancer things. So if you have chemo brain, you'll be able to just go read your email, find anything we talked about on the podcast without having to remember it.

Eva (36:58): The link to sign up is in your show notes and on the newsletter page at breastcancerstoriespodcast.com.

Kristen (37:04): We promise not to annoy you with too many emails.

Eva (37:09): Thanks for listening to Breast Cancer Stories. There's a link in the show notes with all of the resources mentioned on this episode and more info about how you can donate. If you're facing a breast cancer diagnosis and you want to tell your story on the podcast, send an email to hello@theaxis.io. I'm Eva Sheie, your host and executive producer. Production support for the show comes from Mary Ellen Clarkson. And our engineer is Daniel Croeser. Breast Cancer Stories is a production of The Axis. the axis.io.

Theresa Brown, RNProfile Photo

Theresa Brown, RN

Author / Nurse

Theresa Brown is a New York Times best-selling author. She has been a contributor to the New York Times, and her words can be found on CNN.com, in the American Journal of Nursing, the Journal of the American Medical Association, and the Pittsburgh Post-Gazette. She’s also been a guest on MSNBC Live and NPR’s “Fresh Air.” She received her PhD in English from the University of Chicago. Theresa lectures nationally and internationally on issues related to nursing, healthcare, and end of life.