Breast Cancer (Erin’s Version) Part 1

Last year, co-host Erin Stein went through diagnosis and treatment for pre-menopausal breast cancer. She intimately details her patient experience from mammogram to MRI, from cancer surgery and breast reconstruction to Tamoxifen. Erin shares insights from her journey with her boobs so other women will know what to expect.

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This episode was produced and edited by Erin Stein. Music: “All We Live For (instrumental)” by Wolfclub licensed through Audiio.com. Intro and outro edited, and video created, by Ian Mayer. The Savvy Patient logo by Amanda Spielman.

TRANSCRIPT

00:00 A Few Words About Mammograms

04:54 Our Relationship with Our Boobs

09:29 Screenings: Mammogram, Sonogram Basics

12:28 Biopsies - What's Inside My Boobs?

15:32 Lumpectomy Surgery

17:05 Screening: Breast MRI

18:42 Diagnosis and Different Kinds of Cancer

22:03 Treatment Decisions

27:07 Reconstruction: DIEP Flap Surgery

32:34 Post Surgery Experience

36:58 Medication and Hormones

45:04 Insurance, Family History, Genetics

Gillian Goddard: Hello and welcome to the Savvy Patient. Today we are talking about boobs and breast cancer.

Erin Stein: So, this will not be safe for children to listen to. Not because of the boob part, but because I'll be swearing. I'm going to do more of the talking today. So exciting for Gillian because, 

Gillian Goddard: Yeah, it is exciting for me. I like to be on the other side.

Erin Stein: Because I have boobs, but also, I had breast cancer, last year. So, I am technically a survivor, which still feels very strange to say. before we talk about our boobs, I'm just, I'm going to go on a little bit of a rant that I warned Gillian I was going to do because I've started to see some things on the internets, as it were, suggesting that women do not get mammograms or MRIs, that they should avoid these screenings at all costs. And I don't want to vilify people. Perhaps they are well-intentioned and just misinformed, but that is complete bullshit. is A very calm way of saying how I feel about it. Because this is how you catch your cancer and you treat it and then you're fine. That is what happened to me. I would not be totally fine, have zero problems going forward if I hadn't gotten both a mammogram and a breast MRI. some people are claiming you should not get mammograms because of the radiation.

Gillian Goddard: Agreed.

Erin Stein: you do get a small dose of radiation, really tiny, that they have studied. And also, do you know how you get radiation? By existing on planet Earth.

Gillian Goddard: really tiny. getting on an airplane.

Erin Stein: Not even. Walking around in your backyard, you're getting radiation. Radiation comes from the earth. Radiation comes from the sun. You are absorbing radiation on a daily basis and your body is built to deal with it. Now, if you're in a nuclear accident, that's too much radiation. If you're getting a mammogram every day, that's probably too much radiation. But something I saw online was like a mammogram is kind of like an average of a month or two of regular radiation that you're getting just walking around. And so...

Gillian Goddard: And an MRI has zero radiation.

Erin Stein: That's correct. I don't understand why MRI is categorized in there. There's no radiation in an MRI. Zero radiation.

Gillian Goddard: zero radiation and no radiation in ultrasound.

Erin Stein: no radiation at all. So, avoiding radiation is not possible. Do not avoid a mammogram because you're worried about the radiation. the benefits far outweigh any negligible risk that may or may not exist. I'm not convinced there is any risk because as long as you're not doing it all the time, which nobody is, you're doing it maximum once a year probably. And lot of people do it every two years, so that's fine. I'm going to try and calm myself down for the rest of the conversation. Get a mammogram. Get a mammogram. Get a mammogram. Get a mammogram. And if someone is telling you not to, do not believe them. It's not correct.

Gillian Goddard: Get a mammogram.

Erin Stein: And also, don't stand on tin foil to brush your teeth. Okay, I'm ready.

Gillian Goddard: or to use the microwave.

Erin Stein: This is something we're going to come across a lot, actually. People take something and go so far extreme, and so I'm not saying radiation is good. I'm not saying we should be bathing in it. However, there are times when minimal doses of radiation are totally fine. And the fact is we are exposed to radiation. all day, every day, just by existing on planet Earth. It occurs naturally on the Earth.

Gillian Goddard: This is one of those things, and I talk about this a lot, where you have to think about not just the risk, but how the risk is weighed against the benefit and what the effect of doing nothing would be.

Erin Stein: Right. Yeah, doing nothing is worse, objectively, but also in my opinion, as Bethenny would say, that's my opinion. Also, some people will say, well, since everyone started getting mammograms, everyone's getting breast cancer. No, people are finding their breast cancer and getting it treated. And now the survival rate is 44 % where it was like 18 % before.

Gillian Goddard: we're finding breast cancer sooner so that we can intervene more effectively.

Erin Stein: and that is the tale I will tell you today of finding breast cancer very early and dealing with it, in my opinion, quite definitively. when we talk about breast cancer, we are talking about boobs. I mean, yes, obviously, but also our relationship to our boobs. And so, I want to talk about that for a couple of minutes at the beginning because I

Gillian Goddard: Yes. Indeed.

Erin Stein: don't think we talk about that a lot, but when you're a woman dealing with breast cancer, even contemplating having it, like some women don't get a mammogram because they're just afraid. They don't want to know if they have breast cancer, right? Because it was once upon a time really bad to get breast cancer. We didn't have treatments. Surgeons were just cutting off your shoulder muscle and your breast. I mean, it was a wild, horrible time.

Gillian Goddard: Yeah. Yeah.

Erin Stein: And women were not catching it very early. So by the time it was caught, it was very advanced and it was a death sentence. So all of these things have changed. But culturally we've absorbed a lot of these messages. Also, culture ties being a woman so much to your boobs. So much my entire young life.

Gillian Goddard: Yes. Yeah. so much.

Erin Stein: I was buying padded bras at Victoria's Secret to try to pretend... Yes, I'm sure Gillian was with me on some of these trips to Victoria's Secret because I didn't have any boobs.

Gillian Goddard: Pretty sure I was there when you bought some of those.

Erin Stein: When I got married in my late 20s, I sewed pads into the dress and put cutlets in my bra and there was still room in there. the dress was so beaded that I couldn't adjust the dress itself. So, I was just stuffing to fill the void. my breasts were very small. And so I was embarrassed about them. I thought they weren't big enough. I didn't think I was sexy. I didn't think I was woman enough, you know, because that's the messages we were being given by the once upon a time women's magazines that we were reading. Now the internet and the anime giant boobed figures that we see. in my mind, I didn't care about my boobs. My boobs were a curse upon my existence. They were so annoying. And then in my mid-thirties, they started to grow. I'm like, great. Now I will finally fill out a top except that they grew unevenly. So, one was much bigger than the other and they were so fucking lopsided and so annoying in a totally different way.

Gillian Goddard: this is really important to talk about because women don't realize this. Obviously, there are degrees, but all women have some asymmetry. And we don't even have a good sense of how many women have more severe asymmetry and how many women have less severe asymmetry because there's no good studies on it. But when breasts grow in adolescence during puberty, girls can have huge degrees of asymmetry during puberty while breasts are developing and they, no one tells them that that's totally normal and that it probably won't stay that way. And women don't talk about the fact that most people have one bigger boob and one smaller boob.

Erin Stein: for my fellow lopsided boob ladies out there, I feel you. when they were smaller, I'm sure they weren't a hundred percent the same size, but it was not noticeable, especially when I had a bra on. But as they got larger, even with a bra on stuffing one side to try and even them out, I said something to a friend once and she's like that one. And I'm like, so great. So, you can still tell. went on a beach vacation, I was sewing pads into one side of all of my bathing suits because clothes are not made, it is dramatically evident that they are not the same size and bras are not made in a way that makes it easily adjustable. And the best solution is just stuffing one side, like the fancy bra you can get just has a pocket to put more stuffing in.

Gillian Goddard: Yeah. No. For asymmetry.

Erin Stein: Okay, so my boobs and I were not friends. We were not getting along. So when I turned 40 and I started getting a mammogram, I'm like, you know, I don't even care. If I have to take these things off, whatever, I went for my first mammogram like a good little girl. just to pause on getting mammograms, which everybody should do, you just give them your boob and they squish it into this thing and it gets squished between these plates. And it's not that bad. no, absolutely not. Is it comfortable? No. for me, it's a little bit painful. I know that some women have more pain.

Gillian Goddard: No, it's really…would I do it for fun? No.

Erin Stein: but it is very brief.

Gillian Goddard: It's so short.

Erin Stein: And if your kid walked up to you and punched you in the boob, would probably hurt more, frankly. It is over very quickly and the technicians usually are very good at handling it. They know everyone's nervous and they do it quickly and it's over. So get your mammogram.

Erin Stein: then I got a letter in the mail and it says, you have dense breast tissue, so you need to come back and get a sonogram. Same thing as an ultrasound.

Gillian Goddard: So, fun tip, you can ask your doctor, and this is dense breast tissue is especially common in younger women, so when you're first getting your mammograms in your 40s, ask your doctor to give you the prescription to go for the mammogram and sonogram together so that you don't have to go back and make a second trip.

Erin Stein: Yes, so after the first one I did that every year. I would do both at the same time. So, then I got a sonogram and then they saw some stuff in there and they were like, we want to biopsy it to make sure we know what it is. And so, then I did get nervous. I'm like, my God, there's stuff in there, these fucking things. And then I'm like,

Gillian Goddard: Yup. Yup.

Erin Stein: Maybe I don't want to just cut them off. Like, I don't know. Suddenly I was concerned about keeping my boobs, which I had never been concerned about it before because they caused me nothing but grief. But it's a part of your body. It's attached to you. It's a scary thought and you don't know what's going to happen. And when you're lying there with your arm above your head and they're moving this ultrasound, it’s like that movie where the airline attendant is typing on the computer and they're like, let me see if I can find a seat for you. And then they just type and they type and they type and they type. It's kind of like that. You're there and they're looking in there and they're just clicking it. And then they're clicking it and they're still looking in the same spot and they're clicking, you know, cause they're taking pictures every time and you're like, what's happening? What are you seeing?

Gillian Goddard: Yeah. Well, and the technician is not allowed to say anything to you because the technician is not a doctor. They're an ultrasound technician. And so they literally can't say anything to you.

Erin Stein: Yeah, it's disconcerting. This is the word I would use. So I would say if you haven't had one, a sonogram before, just know that they will stand there silently clicking on a keyboard and it's, it's probably fine. Even if there is something, they're just taking pictures of it for the doctor to look at. It could just be a cyst, a fluid filled sack as we discussed in the last episode. So don't panic yet, but it is very strange to be lying there and having this happen.

Gillian Goddard: Yes. Yeah.

Erin Stein: Then I went back for a third time to have biopsies. I think there's different kinds of ways to do the biopsy. Mine had this little like...

Gillian Goddard: Mm-hmm.

Erin Stein: I want to say gun because it makes this noise like they pull a trigger and core by it's like when you go went to the mall when we were kids to get your ears pierced and it's like cha-ching like right in your ear it's kind of like that so they put some injections to numb it first so you're not you don't feel it and then they but the noise is so loud and they take out little samples and then they test it and you

Gillian Goddard: It makes a noise. That's a core biopsy. Yep, it's exactly like that. Yeah.

Erin Stein: I had some bruising afterward and it went away. The first time they're like, okay, so this was a cyst. This is an adenoma. Like everything was benign, but we checked it all out. Fine. Then I keep going every year. I get my mammogram, my sonogram together because I have started asking to get them at the same appointment. And every year we found stuff and sometimes it was just monitoring the stuff that was there. that they had already found. Sometimes they were finding new things. There was stuff in both breasts so I had a couple more biopsies. think I had five biopsies total. I honestly don't even remember. Yeah, so everything was benign. Yeah, almost. But stuff was growing in there, right? 

Gillian Goddard: in seven years. So almost every time you went you needed a biopsy.

Erin Stein: I was prepared for something to happen. Like it was not a shock to me when breast cancer was found in one of my boobs because these fucking things have been nothing but trouble. Why would it change now? And we keep finding stuff in them. Stuff keeps growing. So we got to the point. there were two things, one in each. They were sort of even in this way. Like there was always one in each boob. So we found these things. Yeah, I know. It's like now we're going to be even about it. We found something called a Pash, P-A-S-H, which Gillian might be able to pronounce the full name of.

Gillian Goddard: Pseudoangiomatous stromal hyperplasia.

Erin Stein: Great. Okay. We found those; those are benign. However, they are pre-cancerous. They have the potential to develop into cancer. So I was given an option. come back every, few months. and see if they're bigger or growing. or you can just take them out and I was like, you know what? I vote for taking them out. I don't want to deal with them. And to be honest, I also thought, well, if there's some sort of surgery involved, maybe I can even up my boobs a little bit. Just take a little more out of this one when you take the Pash out of there. So at that point I was still...

Gillian Goddard: Right. Yep. Take a little more out of one than the other.

Erin Stein: traveling quite a distance to go to my old gynecologist and screening center and I said, okay, I'm going to be dealing with more stuff. I want someplace closer to home. So I went looking for a place, got... I'm very fortunate that I live near not only a hospital that has a breast cancer center, but I found a breast health center. they focus on treating women's boobs. So, I met with the breast surgeon, gave them all my scans and all my results. And she said, I agree. I think we should take them out.  and so I had two lumpectomies, one in each boob, and they test them again to make sure there's not anything else going on. And then I went back to mammograms and sonograms. And I'm a person afraid of needles. I don't like shots, let alone surgery, so it was a big deal for me to have those lumpectomies. because I'm pretty avoidant of these kinds of-

Gillian Goddard: I don't think you're so unique in that way.

Erin Stein: but now a lot of people are like, I just went in and had all this plastic surgery, which is still surgery. And I was always like, never, because I'm not going to volunteer to have you stick a needle in me. So, I got through the surgery and I have to say everyone was wonderful. And as much as I was nervous about it, once they put you under, it's, you're great. It's fine. It's golden.

Gillian Goddard: Yeah. Yeah. Propofol naps are very nice. There's a reason why Michael Jackson liked his Propofol so much.

Erin Stein: It was wonderful. Yeah, I mean, it's a hell of a drug. It wasn't super long. So, I didn't have a huge dose of that stuff. So, I only had a little dry mouth when I woke up. Some people have nausea and then it was just surgery recovery, which did suck. I'm not going to lie. Then my great, wonderful doctor said, I want you to start getting a breast MRI. So, we will, we're going to alternate, get a mammogram in your sonogram and then six months later, get an MRI, that is more helpful if you have dense breast tissue, especially because the reason to do an MRI is it sees things the mammogram and sonogram are not going to see. The mammogram is one thing, but if you have dense tissue, it's not going to see everything in there, so they use the sonogram so they can squish everything around and get a closer look at stuff in there. But they're looking at, I guess, a positive image, essentially, for my photography friends. The MRI takes pictures of your blood flow. That's why you get a little IV, get some crap put in you. And then they take a picture. And so you see, you might see a blank area where the blood has gone around and that's how they look for stuff with the MRI. So it is very valuable. And in my case, my very first breast MRI, found two spots, one in each boob again.

Gillian Goddard: They use IV contrast, yep.

Erin Stein: One was a little bigger than the other one, but they had not found them on the sonogram. Then we went back and we did do sonograms for them to try and find them. One they were able to kind of find and put a little marker in there. And the other one they couldn't find on the sonogram was so small we were able to do the core biopsy of the larger one. Came back as breast cancer.

Gillian Goddard: this is a great point at which to kind of talk about the fact that we talk about breast cancer as though it is one thing, but there are actually multiple different types of breast cancer depending on where the cancer cells came from. common types are like, ductal carcinoma or lobular carcinoma and that is because there's different types of cells in the breast that can mutate and become cancer. That's important because different types of cancer carry different types of risk. They may be more or less sensitive to hormones or more or less likely for the cells to have hormone receptors in them. And so how people think through their treatment options at that point will be different based on all of that information. So, you had ductal carcinoma.

Erin Stein: Mm-hmm. Technically classified as invasive because it was right on the edge of a structure. It hadn't actually invaded into the other structure, but it's borderline. mean, invasive sounds so scary, but it just means where it's positioned over your breasts. But I saw that on a piece of paper. was like, oh, what is that? Is that going to grow and take over my body? But no, that's not, that's not what it means. Um, yeah. So.

Gillian Goddard: Right. Yeah, yeah, yeah, it sounds bad. Right.

Erin Stein: My doctor called me and she said, it's breast cancer. She said, but it's small. It's early. It's treatable. She repeated that to me a couple of times on the phone. It's a very good thing to say to me. because as much as I was expecting this phone call at some point in my life, it still is not a good feeling. And it's the uncertainty, right? You don't know. And until you're going through it, you don't know anything about it. And even though I'm telling you my experience today, there are so many other different versions of this experience. And I hope someday we have other women come on and talk, especially I would like someone who had triple negative breast cancer to come on and talk. It's very different. So yeah, we talk about it like this one entity and it's not. I think...

Gillian Goddard: Yeah. Yeah, it's very different.

Erin Stein: One thing is that so much stuff does grow in your boobs. It's not all cancer, but there's a lot that's in mine, at least there was a lot going on in there and most of it and some, most of it was fine. But then finally there was something that wasn't fine. So I took my husband with me to the doctor.

Gillian Goddard: Yeah. Yeah. Some people have very active boobs. Always a good idea when you're getting news like this where you're going to be getting lots of new information to take a second set of ears.

Erin Stein: it was very nice to have him there, but I also think there is a signal then to the doctor, not that my doctor needed it because I really think she's like an incredible, incredible doctor. But for some doctors, it's a signal that this is being taken seriously and you need to take your time. There's a family member here, slow down and walk people through this.  and so she did, she was fantastic. explained everything to me and then laid out my treatment options. Now, the pro and the con of me catching my cancer so early and it being so small, I had a lot of options for ways I could handle this, which in some ways made it much more difficult because I'm like, I have to decide there isn't just like one best way to deal with this. There was not, was, was, you know, I had to make some decisions. So, ⁓ obviously removing it surgically was number one. Like, yes, we're not going to leave it in there. We're going to take it out.

Gillian Goddard: Yep. Although they're not so much with breast cancer, but there are other types of cancer where we do something called active surveillance, where if it is small and doesn't look like it's growing very quickly, we watch it in a very prescribed way. And so some people do sometimes under very specific circumstances decide to leave cancer in place and watch it and see what it will do.

Erin Stein: Yes. And if I was really resistant to having surgery, they probably would have agreed to monitor it for a little while at least, but if it had grown at all, then they would have just made me take it out anyway. And I was not, I didn't want to mess around with this. I'm like, just get it out immediately.

Gillian Goddard: Yeah. right. Exactly. Yeah. Totally fair. That's most people's sentiment. Most people, that's their instinct initially and it's not wrong.

Erin Stein: As much as you don't want to volunteer for surgery, you don't want to have cancer in there, right? That was one piece that was obvious, but also remember I had that little tiny one in the other boob that we weren't able to biopsy. So I didn't actually know yet if that was cancer or not and there is also some information you don't know for sure about your cancer until they take it out surgically and test the entire piece.

Gillian Goddard: That's correct.

Erin Stein: So that was a little bit like wait what you don't know this yet or that yet.

Gillian Goddard: And they typically will do something called a sentinel node biopsy where they will inject dye into the cancer and the dye will then drain into a lymph node because that's what happens in breasts all the time whether there's cancer or not. 

Erin Stein: Yes.

Gillian Goddard: And so then the surgeon goes during the surgery goes to find the lymph node, which is usually in your armpit. ⁓ They will find the dyed lymph node and look for cancer in that lymph node. The way lymph nodes work with breast cancer, if it's not in that lymph node, it's not going to be another lymph node. So, you don't have to take, you don't have to look at a bunch of lymph nodes. You only have to look at that one.

Erin Stein: Yep. And that actually affected what they did for the rest of the surgery.

Gillian Goddard: Right, they see cancer in that, they go looking for it in other lymph nodes too.

Erin Stein: Right. So, this is going to be a lot of detail that, but I think it's helpful just to hear how much detail there is and how much decision making there is to do, even in my case, which was very early and, and a very common kind of breast cancer. my cancer did not, indicate that I needed chemotherapy.

Gillian Goddard: Yeah.

Erin Stein: So I was relieved that that was not recommended because I didn't want to do that. So that was off the table, but depending on what kind of surgery I did and, how much surgery I had radiation was a possibility. So, I could have a simple lumpectomy again, and then you do radiation on that breast. Or I could. take out all of my breast tissue and then there's nothing left to worry about growing cancer. And so, there's no need to do radiation after that. I was not keen on radiation, but also more than that, because my breasts were so active and growing so much stuff, I wasn't convinced another lumpectomy would take care of it.

Gillian Goddard: Well, and you had the thing in the other breast that you didn't know what that was.

Erin Stein: Right, right. You know, some women really want to preserve their breast tissue. So, they'll do the radiation instead. And it is, it's very targeted. It's 10 minutes a day for, it depends how many weeks you have to go. But the irradiated breast might show some skin changes, some color changes. won't necessarily match the other one anymore.

Gillian Goddard: It depends, but yeah.

Erin Stein: And you can even have some tissue changes because of it. But more than anything for me, I was like I don't want to have to keep doing this I don't want to have to keep getting biopsies and keep getting lumpectomies a factor in this was how I wanted to if I was going to remove my breast tissue How did I want to reconstruct my breasts? I? Didn't want to do implants some people want to do them. I didn't want to do them because Implants means more surgery because you don't keep them forever you get like every at least ten years. I think you have to replace them

Gillian Goddard: Depending on the type, they do have to be replaced with some frequency.

Erin Stein: Yeah. And so also if you were going to get implants, they would remove your breast tissue and put these tissue expanders in there. And then you get the implants put in later. So again, another surgery. Now there's another thing you can do called a diep flap and deep is D I E P. It does not mean they're going deep. It's actually superficial, but they take abdominal tissue fat and move it up to your boobs and reconstruct your breasts that way.

Gillian Goddard: Yep, yes. DIEP stands for Deep Inferior Epigastric Perforator Flat.

Erin Stein: Gross.

Gillian Goddard: Happy to help.

Erin Stein: I feel like more women are taking this option. And I think the practice of it has gotten better. It is now more efficient. It only required a one-night stay in the hospital. It used to require more stays. And my surgeon has done a lot of them and he did it he could do it all in one. So basically, I could have one really big surgery where they would remove the breast tissue and then they would take my abdominal tissue and reconstruct the breast and do it all in one and then I'm done No more surgery, ideally. That was a big factor for me because as I've said, I don't like surgery.

Gillian Goddard: Yep. Yeah, I know that was a big factor for you in your thinking.

Erin Stein: Well, there people who are less scared of it. I'm not a fan. I'm scared of it. I'm anxious about it. I don't want to do it. and having surgery has risks too, right? Um, so that sounded very good to me. It's still natural tissue. I didn't, I had some abdominal fat thanks to middle age, but not a lot. Um, cause I'm a naturally pretty thin person, if not bony. So, my breasts would be small, you know, if I wanted big boobs or even medium sized boobs, I would have had to do implants. I very small boobs again, but I was totally fine with that. All I cared about is that they were the same size.

Gillian Goddard: I love when things come full circle.

Erin Stein: I'm like, I just want them to be pretty close in size so that's what I opted for because, and I don't know that this is obvious, but because we took out all the breast tissue, I don't have to have mammograms and sonograms anymore because it is not going to grow breast cancer because the breast tissue is gone. And it doesn't normally grow in your abdominal tissue, I guess.

Gillian Goddard: No, no breast cancer. That would be a weird place even for metastasis.

Erin Stein: And I guess it's not so much the tissue as the structures, right? The breast structures in there.

Gillian Goddard: when you think about breasts, what is in there. So, there's breast lobules, which are the actual milk producing glands. And then there's breast ducts, which carry the milk to the nipple. the ducts and the glands are the most common cells that cause cancer to arise. And then there's some other structures, other types of glands in there. And then there's some ligaments that in theory hold the whole thing up. And then in between that there's fat. And the structures that actually have the possibility of becoming cancerous, are the lobules and the ducts.

Erin Stein: So, I opted for the big ass surgery, had the big ass surgery. That was a bitch, but because I had had the lumpectomy before I definitely had some idea of what to expect even though it was a bigger deal. I felt a little more confident about getting through it. ⁓ In a weird way this all happened in a good order for me to manage my anxiety about it. Gillian mentioned getting your lymph nodes checked. That was the other thing. The diep flap. That was only if they didn't find any cancer in the lymph nodes. If they had found cancer in the lymph nodes, I would have had to do radiation. So, they would have not, they would not have transplanted the tissue and done the reconstruction. They would have probably put tissue expanders in there as placeholders, and then I would have had radiation, and then I would have had another surgery. So that was sort of like, when I woke up, I'm like, we did it all right.

Gillian Goddard: Right. And then they can't do a reconstruction if you're. Yeah, because you don't know going in for sure.

Erin Stein: You don't know. you're, I think they told my husband in the middle of the surgery, but I was still under, that’s one thing that you don't know. So, there was two possible outcomes actually of the surgery going into it. either doing what you intend to do, or they found some more cancer and you have a plan B. I spent one night in the hospital for anyone who has to have breast surgery. Number one tip I got from someone else, get yourself a little miniature fan to bring with you. I also brought some Pellegrino to the hospital.

Gillian Goddard: I would do that.

Erin Stein: the first 24 hours after the surgery are the worst because they're checking you. So, there's, there's something called a bear, but that's like, she said to me, you're going to have a bear blanket on you or something. And I was like, I don't know what you’re talking about. It turns out it's this like inflatable thing that they put on you with basically what seems like a vacuum cleaner attached to it with a hose and it's filling it constantly with hot air. The brand is B-A something. So you're wearing this inflatable hot air blanket over your boobs. They're keeping it warm and it's very noisy and it tends to slip around and it's a little irritating but It's fine, but it makes you hot and so the personal fan can be helpful, and they didn't keep that on for 24 hours. They kept it on overnight and then finally took it off. But I did not understand what that was, even though somebody told me about it. The other thing that was to me the most, aggravating aside from the fact that you have incisions that are painful and on fire. this is specific to the diep flap because I had tissue transplanted. They are checking to make sure that the nerves have been attached, that the tissue is healthy, So they come by once an hour and hold a little like Doppler wand up to your breasts and listen to the blood flow. And they don't turn the speaker down. The speaker is up very loud and is very crackly. 

Gillian Goddard: whoosh whoosh whoosh. 

Erin Stein: whoosh, whoosh, whoosh, but also the crackling from just the machine. It's so loud and annoying, but you're wearing this compression bra after a breast surgery, and it's the one they give you at the hospital is very tight and it has very strong Velcro and so once an hour they're coming and ripping it open you know, jarring all of your incisions and your new boobs that you just got so they can stick this thing on there and listen to it. And that was the worst part. That was the worst part. I hated that so much. I was never so happy to have something be done when they stopped doing it. So, prepare yourself. But my husband was able to stay overnight in the hospital with me, not that that was comfortable for him, but I appreciated the company.

Gillian Goddard: Right. Right. 

Erin Stein: You're probably not going to sleep much, even though that's all you want to do, because they're going to wake you up every hour to do that horrible thing and also give you some medications for the pain. but after those 24 hours, when I was able to just go home and lie in bed, it was a lot, a lot, a lot easier. And then luckily my, had no complications, no infection, I had to deal with surgical drains, which is gross. And you should talk to someone who's had them before. They're no fun, but they're also. Like, and again, if you have a husband, deputize them. My husband was on drain duty for a week. 

Gillian Goddard: I'm sure he loved that.

Erin Stein: and he just, he, he did not love it at all, but I couldn't bend or twist to do it myself for the first week. So he was doing it. It's gross, but it's a thing and you do it and then it's over. So luckily everything went well. And then I did have a small revision surgery part of that was actually this other detail when they transplant the tissue, they also transplanted a piece of skin that they put underneath the breast and so you can just leave that there but it makes this extra diamond shaped incision so I had those removed so now for me going forward no mammograms no sonograms Presumably no more biopsies and I just get a manual breast exam now every year. I mean, I'm still checking them I'm still having follow-ups with the breast surgeon and after whatever treatment you've gone through Surgery radiation chemo all of the above some combination thereof then you're usually put on medication ⁓ 

Gillian Goddard: Yep. Well, it depends.

Erin Stein: Yes, I said usually So I'll say what I'm on and then you can say more about that. So, I am on tamoxifen for five years the point of that is to reduce your risk of recurrence. there are different drug protocols based on where you are vis-a-vis menopause. I'm still pre-menopause so tamoxifen is the protocol if you're in menopause there's a different drug protocol, there are differences between these medications, I was talked through all of that because if I didn't want to take Tamoxifen, I could take the other drug protocol but I would also then have to take an additional drug to put me into menopause, essentially. So again, more options, more things to think about. a couple of things. One, no one tells you what stage your cancer is. Everyone's like, is it stage one? Is it stage two? I'm like, I don't know. No one's ever told me because partly because you don't know everything about it until it comes out of surgery and gets tested.

Gillian Goddard: No, that's not a thing. Yep, that's correct.

Erin Stein: And then also the tolerance of these drugs. Tamoxifen and I can't remember the name of the other drug, but I'm sure Gillian can... 

Gillian Goddard: Anastrozole.

Erin Stein: Thank you. There are side effects with both of them. And so I talked to my oncologist and I did not get an oncologist until after this giant surgery. And then I went and talked to an oncologist finally, which does not necessarily make sense. You think you go to the cancer doctor when you get cancer, but I dealt with the breast surgeon and the plastic surgeon, but I dealt with the breast surgeon only at the beginning. And she told me some of these things and some about it. And then she said, now go see an oncologist and get a lot more detail and a lot more discussion. And now the oncologist is the one managing the medication. and I have follow-ups with her, but I did not see her until the end, like what felt like the end, because I got through all the surgery. She walked me through all the medications. Also, you have to consider the medications you are currently taking with it. I was on an antidepressant that might have some contraindication. with tamoxifen. So, I switched medications before I started tamoxifen. A lot of people have side effects with these drugs. A pretty high percentage can't tolerate tamoxifen. And they will take it for a year and then go off or they will switch to a different medication. I again feel fortunate. I have some side effects, but I'm tolerating it fine. We haven't even gotten to this. Hormones. So I went through all of these details, but my breast cancer was estrogen positive and progesterone positive. What does that mean, Gillian?

Gillian Goddard: Yes, hormones. They test the cells for three different receptors, estrogen receptors, progesterone receptors, and something called HER2, H-E-R-2 receptors. Those are receptors that are in the cancer cells. And when cancers have estrogen or progesterone receptors, that means that those hormones can, if there's any of those cells left in your body, those hormones, estrogen or progesterone, can bind to those cells and cause them to grow. The idea of tamoxifen or anastrozole is that you (and they work differently), but the point is, is that you're blocking the estrogen from acting on any breast cancer cells that are left in your body anywhere. If there's like microscopic cells someplace, these drugs keep the estrogen from being able to cause those cells to grow and become a clinically significant breast cancer recurrence. They work differently. Tamoxifen is called a selective estrogen receptor modulator, which means that at some estrogen receptors, it blocks the receptor and at some estrogen receptors, it acts like estrogen. And the benefit of that is that it, for many women, it has fewer side effects. if you are not post-menopausal, it doesn't affect your periods and it's better for your bones. Anastrozole prevents other hormones from getting turned into estrogen. So, most of the estrogen that we have in our body comes from our ovaries. but our adrenal glands and fat cells actually make some estrogen. And so if someone is postmenopausal, so their ovaries are not making significant estrogen, you can also block those other tissues from making estrogen. And so, they basically reduce the estrogen in your body to zero, and we do sometimes use anastrozole in very high-risk types of cancers even in younger women. But oncologists try to use tamoxifen in premenopausal women anytime that the risk allows for that.

Erin Stein: Yeah. And many women can't tolerate it, but many women do. you have to take it and see. there's no way to know. And so that was a little bit of like, what's going to happen. Luckily, I had a little stomach upset for a week or two that went away.

Gillian Goddard: Yep, there's no way to know.

Erin Stein: I find it weirdly kind of suppresses my appetite a bit, which is unusual, I guess, on this drug, but fine. Now that I've moved all my abdominal fat to my boobs, now maybe I won't grow more for the time being. But the other element of this is something called an Oncotype score. this is something based on the biopsy and then the more complete lab work done on the entire piece of cancer that they take out and there are these calculations done about whether you will benefit from these drugs or not and you get a number like you get a little report card and it's like here's your Oncotype score, which is really the level of risk you have for recurrence based on the type of cancer you had and so if you have a really low Oncotype score. You may not feel like you need to go on one of these medications because your risk is already so low. I was considered medium risk my number, so by taking this drug for five years, I'm reducing my risk of recurrence to a single digit. So, to me that's worth it.

Gillian Goddard: I have a patient, for example, her oncotype score was six. So that means her risk of recurrence is only 6%. but taking tamoxifen takes it down to three or 4%. So, she was like, well, I'll do it as long as I feel OK. But it becomes less critical the lower your risk is.  The higher your risk is, the more of a difference it can make whether you take tamoxifen versus an anastrozole There's some other subtleties to that,

Erin Stein: Yeah. And there's so many studies about tamoxifen, but they're all long-term. So, they say five or 10 years because that's what the research we have talks about, but there's probably some benefit, even if you only take it for a year or two, we just can't say that for sure. Cause they haven't studied it that way

Gillian Goddard: That's correct.

Erin Stein: There are so many different kinds of breast cancer and these things I walked you through are sort of the basics and I've talked to a lot of other women who have gone through breast cancer all of our cancers were different everyone had different treatments that they chose and were recommended to them And so it's a little bit of a menu of items at each step of the way. And it's guided by what you are diagnosed with. But also in my case, if you catch it early, you do have options and you do have decisions to make, which is, as I said, somewhat overwhelming. It's your body, you know, you're making these choices and the farther along your cancer is, I think that changes things. But mine was super early and some people were like, why did you do such a drastic surgery? It was so early and it was such a tiny thing.

Gillian Goddard: Sure.

Erin Stein: My context was I have shit going on in my boobs and I didn't want to deal with it anymore. Like I don't want my life to be defined by checking my boobs all the time. And if I left the tissue there, chances are I would just grow some more cancer at some other point.

Gillian Goddard: I mean, yeah, I think the chances were good that that would have been the case.

Erin Stein:  Were good. And luckily, I still have some boobs to put in a bathing suit. They're much smaller and I'm fine with that because I lived a lot of life with some very small boobs and now in middle age, I don't feel like I need to get a Victoria's Secret padded bra. I think I'm fine

Gillian Goddard: And they're the same size!

Erin Stein: I'm very lucky that I have the health insurance that I have, which at this point is actually better than any other health insurance I've ever had. And a lot of this was covered and I did not pay a lot of money. I was grateful, but also, I know that I'm lucky that that's true. I don't know for other women how much of the reconstruction would be covered, but I do know it is covered more often. Another factor for me is that I had a history of breast cancer on both sides of my family. And even when I was getting mammograms, I told them that. And so that was always in my record. You tend to get more covered. You get more screenings. Like the breast MRI that I had was covered because I had a family history on both sides. So, if you do, tell them. No one's, it's really important and also all you have to do is tell them. No one's asking for paperwork or anything else to say my grandmother or my aunt or my mom or you know, if you have a family history, put that in there. It helps and it helps with your insurance.

Gillian Goddard: Yeah, family history is actually really important in breast cancer.

Erin Stein: I do want to talk about what causes your breast cancer. Where did it come from? It didn't come from my mammogram. I can tell you that. And my breast surgeon said the reality is 90 % or 90 plus percent of breast cancer is environmental caused by environmental factors.

Gillian Goddard: That's correct. I think the way a lot of us think about this and we talked about this a little bit, a lot of times you have a genetic susceptibility, but then something has to trigger those cells with that genetic susceptibility to actually become cancer cells. So, and that typically is something environmental. We don't know what all those triggers are. I wouldn't even say we know what most of those triggers are. But it's the combination of having the right genetics and having that environmental hit, whatever that might be.

Erin Stein: Another element of this is genetic testing. I was thinking about it, but I hadn't done it yet. And then when I got the diagnosis, we went ahead and did it then, because if it did show up that I had a genetic predisposition or had the genes active, that could have informed my treatment that I chose as well. So we did go through that test to get all the information possible, but you may want to do that proactively and then be more vigilant with your monitoring of your breasts. They also tell women with Ashkenazi Jewish heritage that you should definitely be tested because unfortunately the risk is much higher.

Gillian Goddard: Yeah, yes, the risk is much higher.

Erin Stein: And my breast cancer doctor has signs on every wall in every room that if you have this heritage, you should get tested.

Gillian Goddard: Yep. It's just the genetics. It's just a surrogate way of saying your genetics put you at higher risk of having these mutations that really confer significant breast cancer risk.

Erin Stein: But I think what's interesting is that breast cancer has always existed in ancient times even. There’re ancient burials where they've dug up and found what would be considered breast cancer. So it's not new. So environmental factors, yeah, I would agree we have some extra ones happening in our industrial toxic waste age, but it's not like we never got it before.

Gillian Goddard: No, no, there are naturally occurring environmental factors.

Erin Stein: Yes. And Gillian and were talking about carcinogens and things that cause cancer. And she's like, well, campfire in a cave. So we've always had carcinogens.

Gillian Goddard: Yep. Campfire in a cave. Yeah, I mean, and like imagine if you were barbecuing inside. You know, it's kind of what they were doing.

Erin Stein: Cooking that wooly mammoth. So all of that is to say, it is scary, but I feel like it's emotionally scary and it doesn't have to be as medically scary as it was once in the past. There are so many screening methods we now have to catch it early. There are so many ways to treat it now. The treatments are so much more tolerable than they used to be. Please check your boobs.

Gillian Goddard: Check your boobs. 

Erin Stein: Check your boobs. That’s the main message. This is a big topic and this conversation was based on my experience that is singular. That is certainly not everyone's experience and it does not make me an expert on anyone else's breast cancer, but there were some milestones along the way that I thought would be helpful to share if you are ever entering navigating this.

[It’s called the Bair Hugger Warming Blanket!]