Breast Cancer (Erin’s Version) Part 2)

We continue our candid conversation about breast cancer, though much of what we discuss applies to anyone facing a major diagnosis or hospital stay. Erin shares practical advice on telling family and friends about a cancer diagnosis, and managing the emotional challenges that come with being both a patient and a supporter. We dive deeper into breast cancer screening and risk assessment tools, reconstruction decisions, scar care, and recovery after surgery. Plus, Erin shares her top hospital stay tips—from what to pack to what to expect. Filled with personal experience, expert insights, and plenty of practical takeaways, this episode offers support and guidance for patients and loved ones alike.

We take a moment to remind you that while this is a medical discussion, it is not providing a diagnosis or treatment or any medical advice. The only way to get a diagnosis, treatment or medical advice for your particular condition is through a discussion with your doctor.

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Visit www.thesavvypatient.com/podcast for episode transcripts.
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Get your copy of The Hormone Loop by Dr. Gillian Goddard wherever books are sold.

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.

References:

Information about different Breast Cancer Risk Calculators: https://www.breastcancer.org/risk/breast-cancer-risk-calculators

The Tyrer-Cuzick Risk Assessment Calculator:

https://magview.com/ibis-risk-calculator/

Olivia Munn’s story:

https://www.instagram.com/p/C4dXfrULDdJ/?img_index=3

TRANSCRIPT:

00:00 Introduction to the Journey

00:34 Getting a Diagnosis and Telling Everyone Else

04:24 Reacting to Someone Else's Diagnosis

08:46 Screenings, Online Risk Calculators, and Self-Exams

15:44 More About Reconstruction Options

17:57 Minimizing Scars: Silicone Tape, Sun Protection, Keloids and more

24:29 Skin Reactions

26:38 Erin's Top 5 Hospital Stay Tips

39:23 Bra Tips for Post-Surgery Recovery

Gillian Goddard: Hi and welcome to the Savvy Patient.

Erin Stein: Hi everyone. I'm baaaack. We recorded the first episode all about my boobs and I felt like you hadn't heard enough about them. But actually, I just thought of like 10 different things that I wanted to talk about that I didn't think about in the first episode. So, you get a part two.

Gillian Goddard: That's right. I mean, it's a big topic, so it's not surprising that it wouldn't all fit into a single episode.

Erin Stein: It is a big topic and I was trying to get through the basic events and milestones and then afterward I'm like, I forgot to talk about this and that. And a lot of it is really the more emotional part of it probably because I tend to bury that until later. I'd rather just get it done and feel things about it later. 

Gillian Goddard: Yes, that's a coping mechanism.

Erin Stein: It is, it is. I didn't mean to give that short shrift in our part one. Something we talked about when we did an AMA on your Substack was telling people about when you get your diagnosis.

Gillian Goddard: Yes, it really is such a challenging thing to do. And if you've never done it or if you've never been close to someone who's had to share news like this, you've probably never given it much thought.

Erin Stein: Yes. And it applies to any, you know, major medical event diagnosis that you're going to have to deal with. But cancer in particular, is a scary thing. We've made it a very scary thing and it can be a very scary thing. When I got my diagnosis, as I said before, I had been kind of expecting it to happen eventually, but still, you're not ready for it when it actually happens. Emotionally for me, it was a weird mix of almost relief because now I know it's happening. Now I can deal with it. Now I don't have to just dread it happening.

Gillian Goddard: Right? Yeah, it's not just hanging over your head.

Erin Stein: When you're first told you don't know anything about it. You don't know what kind it is. You don't know how big it is. You don't know what the treatments are going to look like. You don't know how long of a road you have ahead of you. So the first couple of days are the worst because you don't, literally don't know anything. Until you go sit down with the doctor, they tell you a lot more but you still don't know everything, which I think is one of the hardest parts; you still have to wait until you have that surgery and then you will know everything about your cancer because they have to take it all out and test all of it and test your lymph nodes. And so you still don't have all the information and I think that's why for me and probably a lot of people you're just focused on the next step. You know, okay, what do I have to do next? And what do I have to do next? And what do I have to do next? Because you literally can't think about the bigger picture yet because you don't have all the information.

Gillian Goddard: It's true. And this is actually a point that applies to a lot of different types of cancers, not just breast cancer. A lot of times they find things that are unexpected, both positively and negatively, when the surgeon actually does the surgery. So it's not unique to breast cancer, but it is certainly an aspect of this path that is challenging.

Erin Stein: The first couple of days, I didn't tell anyone. I mean, I told my husband, because then I made him go to the doctor with me. 

Gillian Goddard:  Which is a good idea.

Erin Stein: So when I first got the phone call, I told my husband, cried a little bit and then was like, okay, she said it was early and treatable and I have to just focus on that until I talk to her. Luckily, I only had to wait over the weekend. We went in on Monday and sat down with her, got a lot more information. And it was not, not scary, but could have been a lot scarier. Then we started telling people. So, one thing is that you're dealing with it yourself. You're dealing with lot of emotions or in my case, suppressing some of those emotions for later, which is totally valid. And every time you tell someone, you have to deal with their reaction to it, which… it's fair. They love you and they're worried about you and they're going to have a reaction and they're going to be scared and worried, but it becomes a chore because it's exhausting to then feel all of their emotions.

Gillian Goddard: That's really hard.

Erin Stein: And I am not saying that you should not have a reaction when you talk to someone. You should and you should say I'm worried and I want to make sure you have good doctors but when someone tells you, just say what do you know so far and then say well I want to do whatever you need me to do for you. I think that's my best advice. You know, some people want people to visit and descend upon them with things and some people don't. They just want to know you're there if they need you. Our instinct as humans is to start asking a million questions. What kind of cancer? What are you going to do? My God, why would you do that? And you know, when I decided to do the double mastectomy, that freaked people out. Like, why would you have this huge surgery if it's so early and so small? I have very good reasons and it's all laid out and once I explained that to everyone, they were like, okay, that makes sense. But when you're hit with this barrage of questions, especially early on when you don't know everything, it's less fun. Ask them what they know instead of firing off a million specific questions, from all your Googling. Cause we know you're going to do it and that's fine. We're all doing it for ourselves. With cancer specifically, don't start asking a million specific questions they might not know and it's going to just add stress that they don't know. And that's not helpful.

Gillian Goddard: I think that's great advice. Asking what somebody knows is always a great way to sort of take their temperature in a challenging conversation.

Erin Stein: Yeah. The other thing is I told my parents myself, I told some of my friends myself, but I asked my husband to tell his family. So I delegated a little bit of the informing, not because I don't want to tell them personally, but it was too many people. And, I did talk to all of them eventually about it. It's not that I never talked to them, but the breaking of the news, my husband handled some of that which was helpful. And I, kind of made a joke about it, I think I told at least one of my parents, I'm getting a boob job. And they were like, excuse me. I was like, well, not just for kicks. [laughs] Telling people is a lot. And I think we don't take a moment to pause on that and realize that it's a lot and it takes a lot out of you. And when someone is telling you, try to stay calm when you're on the phone with them, freak out afterward with other people.

Gillian Goddard: Sure. I also think as the person receiving the news it can be helpful to ask about their feelings about you sharing the news. So, for example, our mothers are also friendly and my mother has known you since you were a teenager. It was news that she was going to be interested to hear, but you don't talk to my mother all the time. And so asking, is it okay if I share this news with my mom?

Erin Stein: Yes.

Gillian Goddard: It is important because different people have different answers to that and if you are the receiver of the news, it's your job to abide by whatever those wishes.

Erin Stein: Yes. That is an excellent point. And in my case, I was like, yes, please tell people so I don't have to tell them, but I think depending on who it is and who you are going through the process, you may want to tell certain people personally. I'm obviously not private about it at this point, but some people are very private about their healthcare. They don't want everyone to know. They don't want to be shouting it on a podcast. So you also have to respect that. If people want to keep their circle close, some people don't want to tell people at work that it's going on. That's also totally valid. So you do really have to just respect what the patient wants and how they feel about it. It's fair to suggest things or ask how they feel about it, but don't tell them how they should be feeling about it.

Gillian Goddard: I mean, that's a good rule of thumb in life sort of generally. It's not a great idea to tell someone how they should feel.

Erin Stein: It is. The other thing I wanted to go back to a little bit was screenings because we did say pretty forcefully that you should get mammograms in part one. 

Gillian Goddard: And you should.

Erin Stein: But I wanted to add that the mammogram itself is improving all the time. They are constantly refining, inventing new versions of it. AI is getting in on the game. There's 3D modeling. The screenings continue to get better and the mammogram experience continues to get better. So, I'm not saying it's a horrible thing, but you got to do it anyway. I'm saying you need to do it, but also, it's constantly getting better and easier to do.

Gillian Goddard: This is actually an area where AI tends to perform relatively well, is in imaging tests, like a mammogram helping to do the reading.

Erin Stein: Yes, helping to read.

Gillian Goddard: These days though that still means there's a radiologist confirming the AI reading by the way, just so you know, the radiologist is using AI as a tool. There's some data to suggest that it's quite beneficial.

Erin Stein: The other thing we didn't talk about with screening and risk assessment is these online calculators that you can do. If you are familiar with the actress Olivia Munn—Olivia, I love you. Let's be best friends!—She's amazing and I love her, but she has been talking publicly about her experience with breast cancer. She was younger. She had dense tissue, but she did not know that she should be getting these extra screenings because she didn't have the normal risk factors. She wasn't finding things constantly like I was, you know, whatever she did was in the situation where you're living your life happily enough and you don't have any reason to suspect you need extra screenings for breast cancer. But she did this online risk calculator and the specific one that she did that she talks about is the Tyrer-Cuzick risk assessment calculator, which we'll link in the show notes. There are other ones. There's actually a whole bunch of them and I'll post a link to that. There's actually one specifically for black women, the Black Women's Health Study Risk Calculator. These online tests are very useful, because they may suggest you have a higher risk than you would normally think. But also, if you sit and do it with your doctor, there is then a valid reason for your insurance to cover that screening, especially if you're younger.

Gillian Goddard: I just ran into this with a patient last week who was told that she didn't qualify for breast MRI, and we sat down and did the tool together and she was quite high risk and so she was going to take that score back to her breast surgeon and have them resubmit for the MRI. It doesn't take very long and it can be a really useful piece of ammunition when dealing with insurance.

Erin Stein: Yeah, that is a huge thing that people should be aware of and know, and it is a tool for you to use to be more aware of your risk, but also then to get what you need to happen covered by your insurance. And I don't know, maybe you know a little bit more, Gillian about how these tools work. I know they're objective and based obviously on data, but it seems like I can just take a quiz and it will know, like my Cosmo quiz.

Gillian Goddard: Exactly. Right, right. It's funny. So, a lot of these types of tools exist. There are several for like cardiovascular risk. Basically, what they do is they take existing high-quality data and reverse engineer that data into questions where we know independently how that question affects your risk up or down. Usually what will happen is someone will build one and then they will test it out. They'll compare it to how other tools perform and on lots and lots of patients. They'll then publish that research. So, developing one of these types of tools actually takes years. Sometimes they'll then refine it a little, but really what they do is they start with the data about people at risk and they reverse engineer to the quiz as it were. But they then prospectively study the quiz too. So, there's actually a ton of research that goes into developing one of these types of things.

Erin Stein: You should know about these tools. You should do one for yourself. Olivia talked about doing it and then she got a breast MRI, you know, joining the breast MRI club. I have another friend who found hers through a breast MRI. Breast MRIs, breast MRIs. Had no idea they existed until my doctor suggested it. So, I try to tell people that they exist and they can find things the mammogram and sonogram can't find. The other screening thing that we didn't talk about because it's feels so old school now is your self-exam, just squishing your own boobs yourself at home. The classic raise your arm in the shower, feel yourself up. I tend to not think about it a lot because my breast tissue was so dense that whenever I tried to do a self-exam, I felt one giant lump that was my breast and I wasn't feeling anything else separate from that. Even when I knew there were lumps in there, I tried to feel them. Couldn't find them. If you are having that same experience, it might be an indication you have dense breast tissue.

Gillian Goddard: Perhaps. The guidelines have gone back and forth a bit on this and some of them recommend it and some of them don't. But we have to remember that guidelines are guide lines and they're not hard fast rules. In certain circumstances, it definitely can make some sense. I also know plenty of women who have felt changes in their own breasts that turned out to be cancer or not, but warranted investigation. We know our bodies best. And so certainly if you notice something that's different in your own breasts, raising that issue with your doctor, expediently, not just waiting for your regular routine visit, but scheduling a special visit just to go in and talk about this one particular issue is definitely a very important thing to do. A lot of times it turns out to be nothing, but that's okay. At least we know.

Erin Stein: Yeah, check your boobs and then check them out. We're inviting you to have a closer relationship with your boobs. Just get to know them, how they feel. And then when you notice a difference, get it checked out. And there are plenty of natural changes. I found plenty of benign things in there when I was checking it all out, but I was happy to check it out. And then I was happy when I found cancer early.

Gillian Goddard: Yes. 

Erin Stein: I wanted to go back to surgery a little bit because I covered a lot about it, but I forgot some things. I talked a lot about reconstruction because I chose to do that, but some women don't choose reconstruction. They just, as we call it, go flat and that is also a totally valid choice. I think more women are choosing to do that because reconstruction can be a big pain and require a lot more surgeries. And depending on your type of cancer, you might just not want to deal with that. So going flat is an option and another factor in choosing what kind of surgery and what kind of reconstruction is your nipple and your areola. We don't often say the words nipples and areola out loud, but depending on where your cancer is, it's a question of whether they can be preserved, saved or not. And then if they do have to be removed to get all the cancer cells out, you can reconstruct them. There are things they can do. Again, I was lucky that I could keep mine. We moved them a little bit, which is a weird thing to think about, but I guess pretty common in the breast surgery world.

Gillian Goddard: That is correct.

Erin Stein: But I was able to keep them, so I didn't have to worry about trying to reconstruct them. Even if you keep them, there can be changes in color and things like that. Sensation is a big thing that can change in general overall. But also, the appearance, like they can fade and you can lose some of the color on them depending on how you scarred. Scar tissue might affect the appearance since it goes all the way around. But there's a very cool thing if you've had reconstruction or if you've just had changes as a result of surgery, there are tattoo artists that specialize in tattooing the color back on your areola and they are geniuses at matching your skin tone and color. And that's such a cool thing that somebody does that and knows how to do that. 

Gillian Goddard: I know, isn't that amazing?

Erin Stein: Yes. So if you end up in that boat, do some online research. There are people out there who specialize and do this. Obviously look for someone with good recommendations, but I just think that's so cool that there are tattoo artists out there doing this. Yeah. That leads us into scars, which I didn't also didn't talk about a lot and Gillian will probably add some more to this conversation because I have my version of how I scar and everybody is different. but the number one thing after you have surgery, the thing backed by data, which Gillian will love, is using silicone tape on your scars. You put it on every day for about three months. I was like, I'll just leave it on all the time because I don't want to think about peeling it off and putting it back on, but it doesn't really help to put it on all the time.

Gillian Goddard: No, it doesn't.

Erin Stein: But I did anyway, cause I'm lazy. But you need like two to three hours a day, I think is the recommendation. But that actually really helps minimize your scars. And the other thing is just plain old Aquaphor. 

Gillian Goddard: I love Aquaphor. Emily Oster says it's like the Windex in their family, like from My Big Fat Greek Wedding where he sprays Windex on everything. And I would agree with that. We only buy Aquaphor in like the gigantic tub. It's good for everything.

Erin Stein: Apparently, it's good for your scars, and healing. So if you're vigilant about that, it does help the appearance. But having the scars is a big deal for a lot of people.

Gillian Goddard: The other thing that is super important to think about maybe not for breast reconstruction, but for abdominal scars for some people is sun protection. Sun protection is really is also really important in how the scar will appear ultimately. And it's really important in the first year for preventing hyperpigmentation specifically.

Erin Stein: Yeah, stay out of the sun with those scars, which, the breast scars are one thing you'd be more concerned about in an intimate situation, but they're, I hope covered up usually in public most of the time. Maybe you change your bathing suit slightly to make sure they're covered, but less problematic to cover up your breast scars.

Gillian Goddard: Probably most of the time.

Erin Stein: But because I did the diep flap, I do have this long abdominal scar that goes all the way across. It's actually, after talking to some friends, it's even wider than a cesarean scar because it goes hip to hip.

Gillian Goddard: Yeah, yeah, cesarean scars are narrower. They're only about four or five inches wide.

Erin Stein: Yes. So that affected bathing suit bottoms for sure. Anything too high cut it's showing. And maybe you want to show it off and you don't give a shit. And I admire you if that is the case. I wish I was that person, but I don't want to answer questions about it. If I want to tell you about my experience, I'll tell you about my experience. It's a big scar and I am still working on it, minimizing in appearance and it can be an emotional thing for people to suddenly have this major body change and have to deal with that on top of everything else.

Gillian Goddard: Yeah, the one thing I would add to that is that scars take about a year to settle in. So, you won't know what a scar will look like until a full year after you've had surgery.

Erin Stein: Yes, that's another really good point. And I don't know if you want to speak to keloid scars.

Gillian Goddard: Yeah, this is a real challenge. Often in women of color, they're more common. But you probably know if you are someone who keloids because people who keloid, depending on the severity of their keloids, they can get keloiding with fairly minor scratches, or other procedures. In this case, I would say you want to have your dermatologist lined up and on call because there are things that they can do to help you minimize keloiding and you want to discuss it with your surgeon too. And obviously, when you're dealing with something like cancer, it's easy to sort of minimize the importance of it, but I think it's important to talk about the cosmetic result that you are hoping to get and some of the factors at play, especially if you know that you keloid. But there are things that can be done to minimize it, but it's really helpful if you know in advance.

Erin Stein: Yeah, I think that's really important and the point of talking about all of this is the cosmetic results are important. They're your boobs and you have to be comfortable with what they're going to look like the rest of your life. Even though you're dealing with cancer and you're going through it, it's still your body for the rest of your life. It's not unimportant what your nipples and your areola will be and what color they will be and what your scars will be like. All of that's really important to think about and consider. And there are steps you can take both ahead of time and immediately after surgery to affect that. So, you need to learn about it and talk to your doctors about it.

Gillian Goddard: Absolutely.

Erin Stein: One last thing about healing and scars is that both with my lumpectomy surgery and my bigger surgery, I had one spot both times that did not heal at the same rate as everything else. And there's a name for it. And so you get a special honey dressing to put on it and it just takes a little bit longer and you need to keep an eye on it so it's not infected, but it's a normal thing. And, for my bigger surgery, that spot was my belly button. So, I had this weird thing, which is not common, but my belly button basically totally filled in. I have like a little dent. it wasn't that they were messing with the belly button, but some suture was tied up through there.

Gillian Goddard: The belly button doesn't serve a purpose after we're born.

Erin Stein: But it is a thing you expect to see, so to me that's actually the weirdest thing not the big long abdominal scar or the Frankenstein boob scars… it's my belly button.

Gillian Goddard: It's these things that I think, it's that they catch us by surprise. 

Erin Stein: Yeah. In this case, even my plastic surgeon was like, huh. There's always going to be something unexpected. Have fun with that!

Gillian Goddard: Yeah. Yeah.

Erin Stein: Thinking about my plastic surgeon, if you have sensitive skin and particularly with adhesives, I did have some reactions to some of the adhesives they cover your wounds with this tape, clear plastic cellophane, whatever. And I reacted to some of that sometimes. And also from the leads that I was lying on during the surgery.

Gillian Goddard: Yes. Tegaderm. Allergies are actually quite common. And adhesive allergies to things where they're like covering a large area are really common. I had that; they cover your whole back when you have an epidural with an adhesive. And so, with all four of my pregnancies, I ended up with like a massive skin rash from the adhesive from the epidural. I still would get the epidural every time.

Erin Stein: Yes, it's something to prepare for and if you're talking to a plastic surgeon and you're concerned about that, you could ask for a couple bandages and tape and just put it on your leg or whatever for a week and see if you react to it. Because I found that the bandages that have a cellophane window they put it over the drain area, that I reacted to, but just the tape around things I didn't react to. At one point I was like, can you not use another one of those and put something else on? And there was something else they could put on that was far less itchy for me. Also, when you're healing, it itches on the inside of your body and you can't scratch it because it's on the inside and it is maddening.

Gillian Goddard: You can't get to it. Yes, itching in general is a fascinating phenomenon, but yes, when you are healing, is intense.

Erin Stein: I'm still having it months later. I still have random itching sensations on the inside and I keep trying to tell myself it's good. It means it's healing. It means those nerves are doing something instead of nothing, I keep trying to itch my abdomen and my husband's like, what are you doing? And I'm like, it itches on the inside. I can't get to it. So, I wanted to give my top five hospital tips, which will apply for breast surgery, but also other surgeries, because I was so nervous about going into the hospital and having a big surgery. My lumpectomy was just at a surgical center. It was less intimidating somehow. But the hospital is a big deal and the hospital is a business being run and you're brought in with a whole crew of other people and it's very organized but it feels a little impersonal because it's organized. You're all put in a bed and then everyone gets their IV in and then everyone gets their doctor visit and their anesthesiologist visit and it feels a little bit like a factory is what I'm trying to get at. Number one is be prepared to wait a lot at every step of the way.

Gillian Goddard: Yes. Yes.

Erin Stein: I went into the hospital first thing in the morning and then I waited and then they brought us back to a bed and then we waited and then we finally did all the things and got ready and I talked to all the doctors and the anesthesiologist and then we waited and then finally someone wheeled me into surgery and then you're out of it and you don't care.

Gillian Goddard: Right. At least you hope you are. If the anesthesiologist is doing their job, then you are.

Erin Stein: You really hope you are, correct, and if you're not, hopefully you can signal that to someone. In my case, eight hours went by totally fine, but then you go to recovery and you wake up and then you wait in recovery. Depending on your situation, some people just wait in recovery forever. I was getting a bed. I was told I would be getting a bed to spend the night in. I was spending one night in the hospital, but I waited five hours to get to that bed.

Gillian Goddard: Probably because somebody else needed to get discharged before and then the room has to have cleaning and as you can imagine in a hospital, the cleaning that has to happen to make a room ready for a new patient is more intense than what most of us do, in our kitchen or living room.

Erin Stein: Yep, I was told all of those things and I was also told they had to then warm the room up, which I feel like was bullshit. I was like, either you have the heat on or you don't. 

Gillian Goddard: That's a new one to me. I've spent a lot of time in hospitals as a resident and a fellow and a med student and warming the room up is not one, I've heard before.

Erin Stein: The nurse was very nice and it wasn't his fault, but I was getting quite annoyed, even in my post-surgical state, not at my best. And then the room's finally ready, but I still can't go because I have to wait for something called transport. And the transport had come earlier when the room wasn't ready and then they had to be sent away and then we had to wait again. So, I waited an extra hour just waiting for transport. So, what that means is there are people whose jobs it is to wheel you from one part of the hospital to another and or at the end to wheel you in a wheelchair out the door and only those people are allowed to do it.

Gillian Goddard: That is correct. So it depends on where you are. First of all, it is a specific job, patient transport. It's not a nurse, it's not a patient care assistant. Like there's lots of different jobs. Transport is a specific job. It is typically a unionized job depending on where you are. And so there are restrictions around who is allowed to move patients around the hospital. And typically, the one exception is that the doctor can move the patient. So as a resident, you learn that if you need somebody to get something done, you move them yourself. And so you will often see residents moving people around hospitals, especially in the New York metro area. But I would say in general, in most hospitals, really the only people doing it are the transport people.

Erin Stein: So be prepared to wait for your transport person. Hopefully it won't be an hour. apparently, this was like rush hour. 

Gillian Goddard: There's rush hour, there's shift change. So, depending on whether they do eight- or 12-hour shifts, there are various shift changes when there won't be people available. Obviously, they're rightfully entitled to breaks and lunches, which are staggered, but it does mean that at times there's fewer people available.

Erin Stein: The last part of waiting in the hospital is discharge. So you have some idea of when you'll be discharged, but it all depends on how you're doing. I had to get up and walk around, had to show I could go to the bathroom on my own, which is a critical thing that they usually check in the hospital and not the first thing you would think of, but it is important obviously. For discharge, the doctor has to put the order in, then they have to get the paperwork, then they have to print out the paperwork, then they have to bring you the paperwork and go through it with you, which took some time. I was going home with drains, showing us how to clean out the drain. She gave us bandages. They should be explaining all these things. All your medications are explained in the schedule. All that stuff is very important, but it takes time. So even if they're like, you'll probably be discharged around five o'clock, that's probably not true. Add an hour at least to that. 

Gillian Goddard: Correct. I was going to say two.

Erin Stein: Or two, for me, it was about two hours from when I thought I would be leaving to when I actually left. Overall, if you're going to the hospital, just be prepared to be waiting at all these various stages. And it's going to be annoying and there's nothing you can do about it.

Gillian Goddard: Mm-hmm.

Erin Stein: I don't know how helpful that tip is, but it's something to know ahead of time.

Gillian Goddard: A lot of what gets people frustrated and upset in these situations is inaccurate expectations. And so to the degree that we can set people's expectations a little bit more accurately, we'll save them maybe a little grief.

Erin Stein: Yes. Hopefully, hopefully. The other thing—I did not do this and I now wish I had—was bring your own cozy blanket. There are blankets that they put on you in the hospital and if you're lucky…

Gillian Goddard: They are. They are. And they have blanket warmers, which are quite nice.

Erin Stein: … and they have blanket warmers, was just going to say sometimes that blanket's already warm, that is lovely. But it's thin, And I was there long enough that it would have been nice to have my own little cozy blanket. Also, hot tip for those of you who are needle phobic like I am, I always put the blanket over my arm where the IV goes in. So anytime someone puts an IV in me, I'm like, I'll just take this blanket and drape it over there. So I don't have to look at that. and they were very nice about me doing that. No one made fun of me. But in that case, it would have been nice to have an extra blanket since some of it was being put to a different purpose. Covering up needles I didn't want to see poking out of me. The other thing is if you are spending a night or more in the hospital, bring a sleeping mask. Because if you're in recovery, the lights are never going off. 

Gillian Goddard: They might dim them, but they might not.

Erin Stein: They're not going off. Even in my room, they were turning the lights off, but then there was one light that they couldn't figure out how to turn off. So, I was very happy I had the sleeping mask. But even so, there would have been one small light probably left on, or she would have turned it on when the nurse comes in once an hour to check on you. So, if you really need darkness, bring a sleeping mask.

Gillian Goddard: The other thing is rooms often have windows that go out into the hallway and even though they're often have like a curtain or something over them for privacy. Light leaks in for sure. Hospitals in general are not restful places.

Erin Stein: Correct. So, if you want to try and be a little more restful, a lot of these items are to that purpose. So, sleeping mask and the next one, similar, a personal fan, which I mentioned this in part one, and that was specific to this Bair Hugger machine, the Bair Hugger machine does make you hot. And so the personal fan is good for that. But I also found myself just wanting it on all the time because for me the little bit of breeze was a nice distraction from pain and also the noise is a little bit like a white noise it made it a lot easier for me to doze at least a little bit. I'm not going to say that I slept in the hospital but I dozed and the fan was particularly helpful so if you think that kind of thing would be helpful bring two. Mine was a rechargeable. So, I brought two so that I had one ready to go already charged. Or if you have one with batteries, bring extra batteries, because it'll run out if you're using it the whole time. So personal fan, highly recommend. And then as I also said, bring Pellegrino. I don't mean you have to bring Pellegrino, but bring something you like to drink. They are less restrictive on your beverages. And the hospital really just had apple juice or water.

Gillian Goddard: Sometimes they have ginger ale.

Erin Stein: And the other hot tip is when it comes to food in the hospital, there are a couple of things to know. They're not going to let you bring in your own food necessarily because there's protocols you get a special menu that you're allowed to order from after your surgery. There are windows of time when you can put your order in for your food. You don't want to miss that window because you're screwed. So check with the nurse.

Gillian Goddard: No, because then you're screwed. You basically will get a leftover tray of whatever somebody else didn't want.

Erin Stein: Yeah, you don't want that. So check with the nurse when it's appropriate or have the person with you check to make sure you don't miss the window to put your order in because you were sleeping or something. And then ask the nurse about what's on the menu because I wanted some eggs, I wanted some protein, and she gave me a very important piece of information. She's like, order the omelet because that's made with real eggs. If you order the scrambled eggs, those are made out of powdered eggs and people don't like them. And I was like, that is a very important piece of information. Thank you so much. I will be ordering the omelet. So, definitely ask the nurse about the quality of the different items on the menu. And I will say the food was fine. I was pleasantly surprised that the food was edible.

Gillian Goddard: Yes. I always found the special menus are better than the run-of-the-mill menu. For example, the hospital where I had my kids always offered a kosher menu and the kosher food was much better than the regular food. So I would routinely order the kosher meal.

Erin Stein: That makes sense. These are important decisions you get to make during your medical care.

Gillian Goddard: At points in your care, you are allowed to eat outside food, but you have to check with your medical team first.

Erin Stein: Yes, I don't think I was really there long enough. We did bring some snacks and I just never actually ate them. You want to have some rations for yourself. Yeah, so be prepared for waiting, bring a blanket, bring a sleeping mask, bring a personal fan and bring some drink some food and be aware of what you're ordering. Ask for recommendations. I'm not saying treat your nurse like a waiter, but ask for some insider info.

Gillian Goddard: Nurses always have the inside scoop on anything. So, what you really want to do is be friends with your nurse.

Erin Stein: Yes, you will have more than one nurse. They have shift changes and they rotate in and out and you will like some better than others, but you want to be friendly with them.

Gillian Goddard: I think a lot of these topics that we talked about today are actually more broadly applicable because they have to do as much with being a patient who is experiencing something kind of big and hard as opposed to having breast cancer specifically.

Erin Stein: That's true. And hopefully some of it was helpful and I would love for you [listeners] to put your own tips. These little things like the fan and the sleeping mask make a big difference for making you feel prepared for what you're going to go through. 

Gillian Goddard: Erin, you had something to say about bras.

Erin Stein: I know. Okay. I swear this is the last thing. We're recording this last bit on another day because I forgot about it when we did breast cancer part two. So, here's your mini breast cancer part three, which will be part of breast cancer part two. I wanted to talk about bras really quick because you will need them after your surgery. You need a compression bra, a post-surgical compression bra. And depending on your surgery, I don't think a sports bra is good enough. Eventually you can switch to a sports bra, but initially you need a fancier compression bra squishing it all in there while you're healing.

Gillian Goddard: Sounds lovely.

Erin Stein: It does. Now here's the thing. You need to think about what size you're going to be after your surgery when you buy these bras.

Gillian Goddard: That makes sense, but I can also see how it is something that one would forget about when making a purchase.

Erin Stein: Yes. And also like most bras, figuring out what size you need is challenging. So my advice is order a whole bunch of them, try them on and return what doesn't fit and what you don't like. A couple of things I realized doing that is I needed adjustable straps because I have a very long torso and I needed longer straps than most people.

Gillian Goddard: Well, but I would need adjustable straps for the opposite problem.

Erin Stein: Yes. they have straps that are either Velcro or have hooks on them. That was a big thing I realized quickly. I needed adjustable straps. Also, some have hooks in the front or zippers in the front. You may have a preference. I preferred the hooks because then if it was digging into me, I could at least undo one hook and have some relief. My other tip is to have a variety of styles. Don't just buy one bra. I mean, you can't just buy one bra. You have to wear it 24/seven for like two months.

Gillian Goddard: You're probably going to wanna wash it in somewhere in there.

Erin Stein: So, you're probably going to want at least a couple so you can wash them occasionally. Wearing any bra for that long it gets uncomfortable. It's digging into your skin. So I bought a variety of styles so that I could switch styles. 

Gillian Goddard: So they would dig in differently.

Erin Stein: Exactly. That's precisely what my strategy was, that it would dig in in different spots as I changed it. I would basically wear one during the day, one at night and switch on and off. So those are my hot bra tips. A second piece of that is some of the bras come with these little, plastic circles, like key chain rings, basically for you to put your drains on.

Gillian Goddard: How elegant.

Erin Stein: All of this is so elegant. You're going to have drains probably hanging off of you. And so, some of these bras are like, here's a little thing you can clip your drain onto. I wouldn't get those. Partly because it is like trying to open a key ring. They're very challenging to use. Second of all, I didn't want my drains like flopping around hanging by my sides right under my arms where I felt like I was going to bump into them or whatever. The drains have a ring on them that you can just use a giant safety pin or a diaper pin if anyone still has those, just pin them to your clothes. Pin them to the bra, pin them to your pants. My other drain thing is when you're taking a shower again you can't have your drains flopping around so one of my doctors actually said get a lanyard like when you go to a conference and you get the thing around your neck with your tag on it get one of those and just clip them to the lanyard when you're showering. It's genius. I know you have a drawer full of lanyards, all you professionals, that you don't know what to do with. This is what you do with them. You clip your surgical drains to them. And most of the time I just walked around with my drains on a lanyard because it was frankly easier.

Gillian Goddard: Yeah, that makes sense. Luckily, you don't have the drains for so long. 

Erin Stein: Not for too long, a week or two. So yeah, those are all my hot tips. I swear I'm done for now.

Gillian Goddard: Thanks.