Dr. Deanna Attai is associate clinical professor of surgery at the David Geffen School of Medicine at UCLA. Dr. Attai was an early adopter of social media for professional and patient education. She serves as the social media editor for the Journal of Oncology Practice and is a member of the Annals of Surgical Oncology editorial board. She is a member of the American Society of Clinical Oncology Social Media Working Group and co-chair of the Collaborative for Outcomes in Social Media in Oncology research group.
Much of her recent research has focused on going flat and how satisfied women are with this decision, as well as whether surgeons support women who want to go flat.
Listen to the podcast to hear Dr. Attai explain:
- the reasons why a woman may opt to go flat
- why she decided to study how satisfied women were with their decision to go flat
- how a woman should talk to her surgeon to ensure she gets a truly flat chest that she is happy with cosmetically after mastectomy, with symmetrical scars and no dog ears
Running time: 29:15
Show Full Transcript
Jamie DePolo: Hello, everyone. Thanks for listening. Dr. Deanna Attai is associate clinical professor of surgery at the David Geffen School of Medicine at UCLA. Dr. Attai was an early adopter of social media for professional and patient education. She serves as the social media editor for the Journal of Oncology Practice and is a member of the Annals of Surgical Oncology editorial board.
She is a member of the American Society of Clinical Oncology Social Media Working Group and co-chair of the Collaborative for Outcomes in Social Media in Oncology research group. Much of her recent research has focused on going flat and how satisfied women are with this decision, which is the topic we're going to discuss today: going flat after mastectomy.
Dr. Attai, welcome to the podcast.
Deanna Attai: Thank you. Thank you for having me.
Jamie DePolo: So, I know a lot of women opt for some kind of reconstruction after mastectomy, but there are many other women who don't. So, based on your research and your experience, could you tell us some of the reasons why a woman might choose to have no reconstruction after mastectomy?
Deanna Attai: Sure. Well, sometimes it's just not an option. There are some cases with more advanced breast cancers and inflammatory breast cancer where immediate reconstruction may not be recommended. It's also possible that perhaps the woman had radiation therapy in the past, is not a candidate for a tissue flap, and implant reconstruction, maybe, is not recommended. So, there are some cancer-related factors and some individual factors that may lead us to not recommend reconstruction for a woman.
Most women, however, are candidates or potential candidates for immediate reconstruction. But what we found was that among the women who went flat, reasons were primarily not wanting a foreign body, because we know that implant reconstruction is the most commonly performed type of reconstruction, and wanting to minimize the potential for complications and minimize the number of surgical procedures.
One of my plastic surgeons that I work with is fond of saying, “Reconstruction is a process, not a procedure.” We really try to stress to the patient that more than one operation may be necessary, and in our survey at least, some women just weren't interested in that.
One of the reasons, as far as avoiding a foreign body — although we didn't dig really deeply into this — is that there's an increased awareness now of the potential complications related to especially particular types of silicone implants. So, breast implant-associated illness and, of course, implant-associated anaplastic lymphoma. I think as we gain more knowledge about these conditions and as there's more literature published, but also more literature published in the lay press, we may find more and more patients are not comfortable with undergoing these reconstructive procedures.
And finally, we had a fair number of patients who stated that their breasts were just not important for their body image, and breast mound reconstruction, therefore, was not a priority for them. The priority was to get the cancer taken care of and move on.
Jamie DePolo: Okay. Now, are there any statistics in the U.S. as far as how many women choose to go flat? Because since we've been sort of reporting on it at Breastcancer.org, I've just heard more and more about it. So, I wondered if the numbers are actually going up.
Deanna Attai: Exact numbers are really, really hard to come by. We do know that, nationally, more women do not undergo reconstruction than have immediate reconstruction. And some of those reasons actually have to do with healthcare disparities, whether it's not a qualified plastic and reconstructive surgeon in a woman's area, or maybe not having adequate insurance coverage. While there is federal legislation to provide coverage for reconstruction, that doesn't mandate that that be performed with no deductible and no copay. So, the cost may be prohibitive for some patients. There’s an indirect cost as well as far as needing additional time off work, potentially, childcare, things like that.
So, we know that no reconstruction is more common, and there are a variety of reasons for that. Unfortunately, there is no national database that captures every single mastectomy case being done in the country regardless of inpatient or outpatient setting, insurance type, and whether it's done for cancer or, say, prophylaxis or other reasons. And so it's hard to come by exact numbers. But I suspect, over time, as we query different databases such as the National Cancer Database or the SEER database, we'll start to see that at least in those patient populations that the databases cover, that we can start to determine whether or not this is really a trend.
Jamie DePolo: Okay. Okay. Thank you. Now, you did a recent study on patient satisfaction after going flat, and the results found that it was about nearly 75% of the women who opted for no reconstruction were satisfied with the results, but about one quarter of those women said that that decision wasn't supported by their surgeons, which is very disheartening, in my opinion. So, did you kind of have an inkling that things like this were going on? Why did you decide to do this study?
Deanna Attai: So, I was interested in doing the study because there are some of the studies published in the peer-reviewed surgical literature that show that women who do not have immediate reconstruction are less satisfied and have poorer long-term quality of life compared with those who have immediate reconstruction. But I'm very active in the breast cancer social media communities and several online communities, and there are a growing number of going-flat advocates, advocacy organizations, support organizations, and just individual women who are openly discussing their experiences. And overwhelmingly, what I was seeing was really very positive.
The women who had gone flat were happy with their decision. They were there offering their experience to others who might be considering the decision. So, there was this disconnect between what I was reading in my surgical literature and what I was hearing from the patients online. And of course, I've had several of my own patients over the years who have opted to go flat and, at least from my standpoint, seemed like they were very comfortable with their decision.
Many of these studies, although not all of them, use a particular validated survey tool that the patient advocates we partnered with on this study felt that the questions were somewhat biased towards those having reconstruction. And so I really started thinking, maybe it's not the procedure that leaves them dissatisfied or uncomfortable, maybe it's how they were asked about their experience.
And those really were the main reasons that I wanted to do this study, but also in the way that we did it, which was including patients in the study design process to make sure that we were asking the right questions and asking them in a way that made sense to women.
Jamie DePolo: Okay. That makes sense. Um, I do want to dig into a little bit, but the tool you mentioned that was used in the previous studies, I believe it's called BREAST-Q?
Deanna Attai: Yes.
Jamie DePolo: And it's a survey. So, it basically asked women a number of questions about satisfaction, life, quality of life, all those kinds of things. So, could you give us some examples of maybe a question where you said the advocates felt it was biased toward reconstruction?
Deanna Attai: Yes. So, first of all, I do want to say that BREAST-Q has been used for over 10 years. It's widely used. It is a well-validated tool. The initial modules that were validated were for augmentation, so, implants for cosmetic purposes; breast reduction; and mastectomy with reconstruction. And then, about a year or two later, a fourth module was added for mastectomy without reconstruction, and there are now modules for breast conservation as well as lymphedema.
So, it's a widely used tool. It's been used for a number of years, but in the mastectomy without reconstruction module, some of the questions read very similar to how they read in the mastectomy with reconstruction. An example would be, “With your breast area in mind, how comfortable are you with your appearance in a bra? With your breast area in mind, do you feel like other women?” And so for a woman, especially, who was very intentional with her decision to go flat and is very happy with that decision, well, maybe one of the perceived benefits of not having breast mound reconstruction was that she'd never have to wear a bra again.
Jamie DePolo: Exactly.
Deanna Attai: And so, how do you answer that question with the breast area in mind when you no longer have a breast area? And the question, do you feel that your appearance is consistent with other women? Well, if you were never defined by your breasts, and that just is not how you define your femininity, and it's not important for your body image, then maybe you would answer, “No, I don't feel like other women,”… but I am perfectly happy with how I look and with how I appear.
So, that's part of the challenge with using some of these surveys that have been validated. And maybe there just needs to be an update because maybe it's not appropriate for at least all of the women in this population at this point in time. It does not take into account, as I mentioned, body image, but, you know, what about the woman who is transgender or identifies as gender non-binary? Again, these questions may be completely irrelevant, and so she may score lower on the satisfaction score because there are just limited ways to answer the question, but she may be perfectly happy with her outcome and with her appearance.
Jamie DePolo: Okay. So, it sounds like, if I'm understanding right, if somebody either didn't answer a question or answered “no,” that would give the person a lower score, which, when tallied, that translates into lower satisfaction, even though that may not be true, because of the way the questions are worded.
Deanna Attai: Correct. The questions require an answer on a scale. What we sometimes call a Likert scale. So, you know, say, “on a scale of 1 to 5” type of a question. And so, if you don't know how to answer the question, if you're unsure, you may put a lower number. Or if it just doesn't apply to you, you may score lower, when, in fact, you're actually perfectly satisfied with your results.
Jamie DePolo: Okay. And I wanted to ask you, too, I think when I read the paper, you talked about how your team, when you were doing this study, you actually created a new survey tool, and that is specifically for women who go flat. Is that right?
Deanna Attai: Well, this was the question that we were asking. We wanted to get at really two things. One, was there satisfaction? But we also wanted to get at their experience, and we touched on this a little bit before about the 20% or so that found that their surgeon wasn't supportive. One, a term that I heard in collaborating with the patients was this concept of flat denial, which was not something that I had heard before. And the patients define it as: the surgeon wasn't supportive of my decision; the surgeon didn't initially offer me the decision to go flat; or we agreed to go flat, but afterwards, I found that excess skin was left, and I was later told that that was "in case you change your mind."
So, we wanted to really capture that concept in our study as well, and I honestly don't think we would've been able to do this without the assistance of patient advocates. So, we did develop a brand new survey with the assistance of the patient advocates. One of the downsides, and I think one of the criticisms of the paper and an appropriate criticism, is this survey has not been widely validated. But that is, hopefully, one of our next steps, is to take this and perhaps tweak it or adjust it, and then use it in a larger population of patients to see if we really are accurately assessing the patient experience.
Jamie DePolo: Okay, and once you do that, I'm curious, is it possible that some of your survey could be incorporated into the mastectomy with no reconstruction part of BREAST-Q? Is it possible that that ever gets edited, or does it just stay as a separate kind of survey tool? I don't know how these things work.
Deanna Attai: Yeah. I'm, honestly, learning as well. This is a completely new area for me, and I think we'll just have to wait and see when we get there. It may be that it's just a stand-alone tool. One of the advantages to BREAST-Q is you have multiple modules, and so if you want to, for example, survey your patients that had mastectomy with reconstruction, those that had mastectomy without, and those who had breast conservation, you can use the same basic tool for all of them, just a different module. So, that is one advantage. Our survey was very, very different, and so I'm not sure if that will fit in or not.
Jamie DePolo: Okay. So, now, from what I've heard, the term “going flat” is often used to describe no reconstruction, but then, I've also heard a newer term, “aesthetic flat closure,” which is really talking about the specific way the surgery is done. And some people I've talked to have said, “Well, this aesthetic flat closure should actually be considered a type of reconstruction because a breast mound is not recreated, but it's surgery to make the chest area look good.” It's not just mastectomy and then, boom. Nothing. So, could you talk a little bit about the differences between the terms, and what doctors say, and what patients say, and is there any sort of disconnect there?
Deanna Attai: Sure. Well, the term “aesthetic flat closure,” as you noted, this is relatively recent. It was recently added to the National Cancer Institute Dictionary of Cancer Terms. I think “going flat” just refers to removal of the breast and no reconstruction, and what it should refer to is removal of the breast, no reconstruction, and the surgeon doing everything they can to make it look nice and neat.
But unfortunately, over the years, and certainly with some of the patient experiences, I think one of the reasons that some of the advocates pushed for this new term and new definition is because of the experiences of women where either skin was intentionally left, or women may have needed an additional procedure for revision. I think the idea of going flat and taking that additional step as far as performing some types of reconstructive procedures, it can be something sometimes relatively minor. Sometimes it's just all about incision placement and how the scar is made, and no real special surgical techniques are needed.
In some women, especially those that are a little heavier or have much larger breasts, then sometimes it can be a challenge, really, to make the incision look as neat as possible, and sometimes some minor reconstructive procedures or techniques are needed to be incorporated.
But I think what aesthetic flat closure also gets at is that in some women, the chest wall is actually fairly concave. It actually sinks in quite a bit. And a woman may not even be aware of that because her breasts are covering up her ribcage, and so with the breasts there, all you see is the breast. Once the breast is removed, it may be a curved chest wall, or it may be a concave chest wall, and that is not always visually appealing to a patient. So, then you get into some more advanced plastic and reconstructive surgical techniques, such as using the excess skin that can be essentially infolded to create some padding in the area, or doing liposuction and injecting that fat into the area to fill it in, what's called lipofilling.
So, aesthetic flat closure can really mean a variety of things. I think when women are trying to communicate with their surgeons, especially since aesthetic flat closure is not a widely used term yet, I think the first message is, “I want the breast removed, and I want my chest wall looking as lean and neat as possible.” Sometimes addressing the curvature of the rib cage or things like that, that may require a second procedure. These aren't always things that can be done at the same time, aren't always things that we know need to be done at the same time.
And then, thirdly, I think for women who potentially are a little heavier set or have larger breasts, realize just like with breast mound reconstruction, achieving a flat chest wall closure may be more of a process and not a procedure. But I think, then, that's important for the surgeon to explain that to the patient and make sure that everybody really is on the same page — with the patient, what she wants, and with the surgeon, what appropriate expectations are. And breast surgeons should be comfortable to reach out to their plastic and reconstructive colleagues to assist on these cases, especially when a little bit more than the standard closure is needed.
Jamie DePolo: Well you kind of anticipated my next couple questions. So, the first, what I'm wondering is, it sounds like if, say, a woman does have a concave chest wall or does have, say, large breasts, is going flat or aesthetic flat closure something that a breast surgeon can do alone, or is it likely that a plastic surgeon would have to be there as well? So, in a sense, it almost is a reconstruction?
Deanna Attai: It really depends, because breast surgery is done by a whole spectrum of surgeons across the country, including those who maybe do 2 or 3 mastectomy cases a year to those where that is their entire practice. So, it really depends very much. And even the surgeon that only does a few cases a year may have the additional training and the skill set to provide an aesthetic flat closure.
So, this is where patients need to ask, and honestly, this is where surgeons need to be honest. Especially when a patient is coming in and saying, “This is what I want, can you do this,” and being honest with the patient as far as, “Yes, however, I would like to include one of my plastic surgery colleagues in the procedure,” or, “Yes, but because of this, that, and the other factors, we may be looking at more than one procedure.” So, these are all things that I think both parties really need to be completely upfront [about] and address before the first operation.
Jamie DePolo: Okay. That's very helpful. I also want to ask you: I, too, have talked to women where they thought they had agreed with their surgeon that they were going to have a flat chest, but the surgeon then left some extra skin, as you said, “Just in case you change your mind later.” They were very disappointed because, you know, nobody wants that flap of skin, the dog ear under the armpit and all that. It's not a good thing. Are there some terms that women should use when they're talking to their surgeons to make sure they're really clear? Are there steps they can take to make sure that the woman has done everything she can to get the outcome that she wants?
Deanna Attai: Sure. I think one is bringing in pictures, and there are a growing number of women online who are posting their pictures.
Now, again, just like if I were going in for implant surgery, and I came in with a picture of, “This is what I want to look like,” the plastic surgeon may say, “Well, you don't have that body type, and so I can't get you that look.” The breast surgeon should say to the patient, “We will do what we can to get as close to that as possible, however, because you don't have that same body type as the woman in the picture, we may have issues with additional skin on the side.”
You know, you get to a point when we do a mastectomy, we're removing the breast tissue, and that additional tissue on the side is not breast tissue. It's oftentimes excess skin and fat, and it's not always appreciated because with the breast, especially a large breast, it's kind of pulled forward. But once the breast is gone, then gravity does its thing. So, I think women should really do their research and do their homework and be aware of the term “dog ear.” It's not the best term, but it's one that's commonly used by surgeons, and so a woman should feel comfortable asking, “What are you going to do to minimize the dog ears, or the additional tissue, on the side?”
It's easy for me to say, “Well, women just need to be very upfront with their surgeon,” but unfortunately, one of the things we did find in our study, we asked an open-ended question, and a lot of women did say, “You know what? I was as crystal clear as I could possibly be. I brought in pictures. I thought we were all on the same page.” So, unfortunately, there are still situations where that flat denial is going to happen.
I'm hopeful that with more women being aware of this research and a growing number of advocacy organizations empower[ing] women to ask these questions, I'm hoping that on the part of the patients, they'll be more empowered. But I'm also hoping that on the part of the physicians, they'll be more aware that this is not okay. When a woman says she wants to go flat, she means she wants to go flat. And we can always do some type of reconstruction later. Yes, the scars will be larger. It may be more of a process. But if a woman is sure of her decision, we need to respect that.
Jamie DePolo: Okay. So, finally, if the outcome isn't what a woman wants, does she have any recourse? I know that some women have told me, “Well, I wanted to go flat because I only wanted the one surgery. I didn't want to have,” as you call it, a process rather than a procedure.
Deanna Attai: Yes.
Jamie DePolo: But it sounds like, if she's not happy, it is going to involve more surgery.
Deanna Attai: Yeah. Unfortunately, yes. The only way to correct excess skin is to surgically remove it. And so, I think just as much as the woman can really be upfront and very definitive in what she wants, I think that will help. And like I said, I'm hoping that with more physician education... you know, one of the challenges I think from the surgeon's side is that when a lot of our literature says, “Women who don't have reconstruction are less happy and less satisfied,” we may be more uncomfortable going along with that decision.
Now, it's never appropriate if a woman says, “This is what I want,” to intentionally do something else, that is just not appropriate at all. But I think this is where some of the flat denial might come from in terms of surgeons not recommending going flat or not encouraging that option for their patients, is because the literature hasn't supported it. So, we at least now have a little bit of an addition to the literature on the side that women are perfectly satisfied and happy with the results, and I'm hoping it's going to help communication. That patients and surgeons can move a little bit more to being on the same page, and really helping women, as I mentioned before, be a little bit more empowered in their discussions with their surgeons and lead to more satisfied patients. Because at the end of the day, I think that's what all of us as physicians want, is we want our patients to be happy, and we want to respect their wishes as much as possible. The more of this information that gets out and the more both surgeons and women are educated, I think the better.
Jamie DePolo: Okay. Dr. Attai, thank you so much. This has been really informative. I appreciate your help.
Deanna Attai: My pleasure. Thank you.
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