To her surprise, Dr Berger learned that younger women are more likely to choose “going flat” as a reconstructive option, in part because they’re more focused on survival than older patients.
Because if someone isn’t comfortable in their body and they’re going into an intimate experience, [they’re going to be] really, really anxious about how this is going to go.
“ [G]oing flat should absolutely … be considered a part of reconstruction, and be respected as a woman choosing a different kind of femininity that doesn’t have to be associated with a breast mound.
When I say 3 types, implant-based vs using their own tissue vs going flat.
And I really feel families are very important and should be involved.
In the second entry in this 3-part series hosted by Cancer Therapy Advisor and Psychiatry Advisor, surgical oncologist Elizabeth R. Berger, MD, MS; Susanne Weber, MD; and Fugen Neziroglu, PhD, explore how romantic and familial relationships can affect patients who have undergone mastectomy.
Dr Weber says that body image plays a huge role in sexual function. A patient will have to “expand” her sense of sexuality and femininity after the surgery to become comfortable with her body again.
Dr Berger notes that breasts, especially in the United States, are closely tied with sex and sexuality; a woman who has lost one or both breasts may find her relationship to her sexuality has changed. To her surprise, Dr Berger learned that younger women are more likely to choose “going flat” as a reconstructive option, in part because they’re more focused on survival than older patients.
Dr Neziroglu adds that including the patient’s sexual partner in physician-patient discussions can have a huge influence, positive or negative, on the patient. As such, it is important to include the partner in conversations about healing and the patient’s self-image.
How can a physician help a woman rethink sex and sexuality after losing a breast?
Elizabeth R. Berger, MD, MS
That’s why, in surgical approaches to breast cancer care, when we have the option of doing breast conservation vs mastectomy, meaning we can take out the cancer with a lumpectomy, [and] save a woman’s native breast, that’s why I always, and this happens every single day I see…patients with breast cancer, I always bring up this idea of sensation loss, nipple removal. And I now make a point to talk about sexual health when I’m discussing the 2 options.
Now, a patient who has breast cancer [and] who has an option of a mastectomy vs a lumpectomy, in my opinion, that’s a very different conversation than when I’m talking to a woman who has to have a mastectomy. Because unfortunately, at that point I can’t offer them an option where they can save sensation. Oftentimes [surgeons] can’t save the nipple, for instance. And then, it is a more kind of detailed and challenging conversation to say, “You are going to lose sensation of your breast or…of your skin,” and that can be really challenging sexually.
Now, I will say there’s been some incredible work on neurotization of skin after mastectomy. The data are mixed, still, as far as how well it actually works, but we’re trying our best in the breast surgical oncology communities and reconstructive communities to try to maintain some sensation to the mastectomy flap or the mastectomy skin, which can change the sexual piece of this, but not completely, as you can imagine.
You bring up this point of the femininity of breasts in America and in kind of what it means to women. I also find it really fascinating. One thing I wanted to touch on is the relationship that a woman has with their breast is so dramatically different. And I, early in my career, always would assume…that a young woman with breast cancer would have this really strong desire to save their breast and that, [she would say], “I’m young, and I just got married, and I want to breastfeed”—that’s a whole other conversation we could have—and I thought that older women who had maybe a bad breast cancer that needed a mastectomy would have no challenges losing their breasts or no second thoughts about it.
I’ve really found everyone has a hard time losing their breast, no matter their age. But I’ve really found the inverse—a lot of older women who’ve had such a strong relationship with their breasts their whole lives, they’ve lived with them, they’ve fed 5 children, and they have a really strong identity with their breasts that they have even a harder time actually losing their breast than, for instance, young women who feel betrayed. “I’m 32, and I’m dealing with this awful diagnosis.”
The [younger women] want them off, and they feel confident about that because it’s this, kind of, early-onset betrayal when they’re trying to live their young 30s life. And so, I feel that’s a really fascinating piece of this as well. Even though they recognize it might affect their sexual life or their ultimate dysmorphic idea of their bodies, they’re much more often comfortable with that idea because, again, they want to live. They have 60 more years to take care of their children and experience life. I find that is an interesting dichotomy and difference than I always thought it would be even earlier in my career.
Susanne Weber, MD
I find that oftentimes patients who don’t necessarily place a high value on their appearance, they’re really shocked by how they react to the change in their physical shape, just the loss of those curves or the way that their clothes have always hung. People don’t necessarily know, going in, how they’re going to react. But, certainly, in terms of sexuality, I think it’s hard when people are going through such an intense surgery, such a big change to their body, that, like you’re saying, with the sensation loss, they can almost feel like, “I’m an alien inside my body. I look in the mirror, I don’t recognize myself.”
It’s hard, then, with that change in body image to feel comfortable, to feel sexual. There’s this worry about, “How is my partner going to react to me? How am I going to restart dating if I’m single and feel like I’m someone who can be sexually attractive to others?”
Again, even if their surgeons can say, “You’re healing great. Everything looks wonderful,” and other people in their lives could say, “You still look beautiful.” It’s that sense of change in femininity that can really be difficult. And so, it’s thinking about how do you expand your sense of femininity, how do you expand your sense of sexuality? Because if someone isn’t comfortable in their body and they’re going into an intimate experience, [they’re going to be] really, really anxious about how this is going to go. How is this other person going to react to me? It’s going to be really hard for them to enjoy that experience. And then there can be kind of this negative feedback loop of, “Well, I just don’t even want to try. I don’t want to put myself in that situation again.” And that’s a real loss to their full quality of life.
I think it is really important to talk with patients about their body image, sexual function, and how all these [factors] interplay, and for people who do have partners, the importance of really having those conversations openly, which a lot of people don’t have within their relationships, and being able to guide people to couples therapy if that’s appropriate.
Fugen Neziroglu, PhD
Exactly. Yeah, I was just going to say that including spouses or partners is extremely important in the dialogue. They can certainly provide support and encouragement, and maybe, also, they are negative influences on the person, and maybe we don’t know that. Maybe they’re making comments here and there, or looking at other women. Who knows what’s going on unless you actually discuss it and bring them in?
The issue of internal vs external control is extremely important here. In mastectomies, when you do have a diagnosis of cancer, you don’t feel in control.
Whereas if you go for breast reduction, breast augmentation, implants, all these other forms of surgeries, you feel like you’re making the decision. It’s an internal control. And so the response is not as drastic and not as emotional as when something is happening to you from the external world that you don’t feel in control of. So I think even touching upon control, and feeling of control and not feeling in control is extremely important. And how can we give these individuals, these women, a sense of control when something [that is] actually not within their control happened to them? So what are the options where they do have control over certain decisions going forward is important, I think.
“ [G]oing flat should absolutely … be considered a part of reconstruction, and be respected as a woman choosing a different kind of femininity that doesn’t have to be associated with a breast mound. Elizabeth R. Berger, MD, MS
“Going flat,” deciding against recreating a breast after mastectomy, is a type of reconstruction. What is the process behind making that decision?
Dr Berger
Man, I feel like we could talk about this for another many hours.
And a shout-out I would give to one of my medical students who I’m working with very closely on this research project. She wrote her entire senior thesis on this idea of reconstruction being an identifying part of femininity when, in actuality, why do we associate so much femininity with a breast mound? And that going flat should absolutely … be considered a part of reconstruction, and be respected as a woman choosing a different kind of femininity that doesn’t have to be associated with a breast mound. It’s an incredible body of work. We’re hopefully getting it published soon.
But I think it’s so pertinent now, actually, and even coming to the surface more, and, not to get into insurance companies, but they are starting to not cover reconstructive surgeons being a part of mastectomy care when a woman is going flat. We often involve our reconstructive surgeons a lot when we are removing breasts and a woman has elected to go flat because it’s a reconstruction–making sure that there’s no additional skin, making sure that their incisions are appropriately flat and not leaving them with excess skin on the sides or even in the center. Right now, working collectively, it’s a coverable operation through the insurance companies and they are, insurance companies, are starting to not cover this, which is unfortunately a drastic change potentially for our patients for that resource.
I’m not answering your question right now, I just wanted to kind of get a little bit of that background. But your question about who chooses to go flat, I mean, I don’t think it’s one particular person, honestly. There’s a lot of factors, I think, that go into that decision.
Sometimes just the idea of all the ongoing complications that come with having a breast mound when women feel confident that, again, they want to get back to as normal [a] life as possible, and they feel that going flat will allow them that ability. That’s their priority, and that is often the way I hear it, why women choose to go flat.
A lot of women who articulate that they’ve never had a strong relationship with their breasts and they actually, I think, would feel more effeminate being flat is a big conversation that I have a lot.
And it’s interesting, too, because again, getting back to this age idea. I hear time and time again when an older woman says, ‘Well, I’m old. Why would I get reconstruction?’ And I try really hard to kind of stop that line of thinking because I often articulate: every woman deserves the right to choose whatever they want. If they want a breast mound at 80 or if they want to go flat at 22, that is that patient’s choice. And we try really hard to make sure that the patient knows they have options, [we] offer all 3 types [of breast reconstruction]. When I say 3 types, implant-based vs using their own tissue vs going flat. We really shouldn’t factor age into it nearly as much as I think sometimes women do.
Dr Weber
I would say from my perspective, there’s certainly some bias that if people are being referred to me, that they’ve been experiencing some distress in the process of their breast cancer diagnosis and treatment. And I agree; I think there are lots of very healthy and reasonable reasons why someone would say, “I would prefer to go flat.”
When I’m working with somebody, and they have chosen to go flat, what I’m thinking about is: is there something getting in the way in terms of anxiety, fear of surgery, fear of future monitoring that is preventing them from making a choice that they otherwise would make? And to the point that women do tend to have better outcomes if they’re able to move through surgery and reconstruction, and if they want and choose the breast mound, that they do that more quickly vs a prolonged process. That is better for mental health: making sure that there isn’t something stopping [them] that we can address from a mental health perspective.
How can physicians bring the patient’s partner into the process and better prepare them for the coming changes?
Dr Neziroglu
In general, when I do consults, I always ask for family members to be present. I know that many mental health practitioners, psychiatrists, psychologists feel [that] if somebody’s over 18 or 21, they’re not going to involve the family. And I really feel families are very important and should be involved. And I’m always surprised at a consult if a family member isn’t there. …When I go to greet [the patient], I always ask, “Would you like your mom [or] your partner to come now, [or] later throughout the whole session? But at one point or another today, I am going to have the person in with you.” So, it is very important to include whoever is the supportive community of that individual in the session. I would hope that in surgery it would be the same, that the person would be coming to hear about: what are the options of treatment and also to assess how supportive or negative they are, or are they going to stand by, go through the process, or is this something the person has to go through individually?
Dr Berger
[I] say, gently and politely, that I often am concerned when partners who come with women for their initial visit [and] offer an opinion about what kind of surgery the patient should choose. I hear it more often when…the partners weigh in. The reassuring partner is often the one who says, “This is your body, your choice.” I say that a lot in visits, “It’s your body, your choice,” and that is less concerning to me often.
Sometimes I will even circle back with the patients on the telephone or maybe another encounter when their partner is not there if I feel like the partner is potentially affecting their decision. And again, not that that’s bad or good per se, but I think it’s really important that the woman feels ownership over their own decision for their body, and that they’re making choices that feel the best for them. Yes, for their relationship, but not necessarily for their partner.
Dr Neziroglu
Right. You could assess that at that meeting, but if they’re not there, you don’t really know what’s going on at home. Whereas there you have the opportunity to say exactly what you said: It’s your body, it’s your choice, and that partner is hearing that. And the woman is hearing it in front of the partner, so she has a sense of empowerment, I think. Whereas if the person isn’t with her, we don’t really know what goes on at home.
Dr Weber
And I think partners are very valuable in the process of assessment and as you’re moving through exploring with someone what is coming up for them, because we all have blind spots. And sometimes, it is the people around us, and the people who love us, who notice first when we’re struggling with something. …They can also be the people who notice first when we’re starting to turn a corner and do better, actually.
Dr Neziroglu
Excellent.
Dr Weber
So, I think the input from partners is really fantastic in terms of getting a full picture of what’s going on for somebody. I also think partners can be huge in terms of reality testing: that people come in with fears, that [their] partner is perceiving [them] in a certain way, or the world is seeing this [or] that, and to be able to, kind of, bounce that off of, well… “Let’s gently ask this person how are they feeling about the changes to your body? How are they feeling about being put into a caregiver role? How is that impacting them?”
And it can also be a great springboard then for saying we need to connect with caregiver support services as well, that they may also need their own support while their partners are moving through breast cancer treatment. And the patients certainly, hopefully ideally, are getting a wealth of support around them that can be extended to caregivers as well.
Elizabeth R. Berger, MD, MS, is an assistant professor of breast surgical oncology at Yale School of Medicine, and cares for patients as part of The Center for Breast Cancer at Smilow Cancer Hospital at Yale Cancer Center in New Haven, Connecticut.
Fugen Neziroglu, PhD, is a board-certified cognitive and behavior psychologist, and the Executive Director of the Bio Behavioral Institute in Great Neck, NY.
Susanne Weber, MD, is a consultant psychiatrist and clinical instructor at the Fred Hutch Cancer Center who works with people undergoing active cancer care and a clinical assistant professor in the Department of Psychiatry and Behavioral Sciences at the University of Washington in Seattle.
