Choosing to Live Breast Free
September 11, 2014

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This Breastcancer.org podcast focuses on not having reconstruction after mastectomy and features Barbara Kriss, the founder of BreastFree.org, a nonprofit website that presents non-reconstruction as a positive alternative to reconstruction. Listen to the podcast to hear Barbara talk about:

  • how she made her decision to not have reconstruction
  • how to handle any pressure to have reconstruction from doctors or loved ones
  • how to ask your doctor for the best possible cosmetic results after mastectomy if you're not going to have reconstruction
  • clothing tips for women who opt for no reconstruction and decide not to wear breast forms

Running time: 25:49

Show Full Transcript

Jamie DePolo: Hello, everyone. Welcome to this edition of the Breastcancer.org podcast. I’m Jamie DePolo, I’m the senior editor at Breastcancer.org. And our guest today is Barbara Kriss. Some of you may know her if you are regular visitors to our site. She has written blogs for us on not having reconstruction after having a mastectomy. After being diagnosed with two primary breast cancers in 3 years, the first in 2003 and the second in the other breast in 2006, Barbara Kriss decided to have bilateral mastectomy. She opted not to have reconstruction and subsequently founded BreastFree.org, a nonprofit website that presents non-reconstruction as a positive alternative to reconstruction.

And we are delighted to have you here today, Barbara. Welcome. I know several women on our boards, I believe we even have, if I’m getting the terminology right, a “going flat” forum on our Discussion Boards so people can support each other if they are looking into this option or making this decision. So, just to start to help them out, if you could sort of tell us the process you went through when you made this decision, how did you come to it?

Barbara Kriss: Okay. I should say that going flat in the parlance these days means some women are choosing to not have reconstruction and not even wear breast forms. And others among us who don’t have reconstruction still want to look in clothing as if we still have breasts, and we choose to wear breast forms. So when I was facing the decision, well, in a way it was just sort of a gut feeling. After my first cancer, I had a wide excision, which is also sometimes called a lumpectomy, and I didn’t get clean margins, which meant that I was going to have to have another procedure, and my surgeon told me I might be looking at a mastectomy. And then, actually, she was going off on vacation, so I had three weeks to think about the possibility.

And during those three weeks I really thought a lot about it. I tried to find things online and there weren’t so many resources at that time. But really, sort of just my gut feeling about myself was I just couldn’t really imagine having reconstruction. What I thought of when I thought of an implant, I thought of it as a foreign body inside me. And I still hear from women who feel that way, but some women don’t think about it that way at all, and of course, as we know, many women have breast augmentation with implants, so implants are common in our culture. But for me somehow it just didn’t feel right.

And then I learned about the tissue reconstructions. And also, they just didn’t feel like they were going to be the right thing for me. I’m not someone who tended to show a lot of cleavage. I was kind of conservative in my style of dressing. And somehow I felt that I was going to be able to move on with my life and not feel like less of a person because I didn’t have breasts. So, that’s how I began thinking about it.

I also should mention, my mother-in-law had two mastectomies, the first at a very early age, when she was 30, at a time when reconstruction wasn’t even available. So, I sort of knew, all of my adult life I had known her, and she had a wonderful, full life, and she was a beautiful woman, and she’d never had reconstruction. So, I think I was fortunate in that sense that I had a role model right from the beginning.

Jamie DePolo: Okay. Did the idea of having more surgery or any possibilities of infection, did that play into it at all, or was it strictly, as you said, just a gut feeling that it wasn’t right for you?

Barbara Kriss: Thank you for asking that. It was absolutely true for me that I felt like I wanted to have the minimum amount of surgery possible, which would definitely be just having a simple mastectomy. And I also felt that if I had reconstruction surgery and I had problems, which, as you know, do occur — infections, or even the idea of having an extended-length surgery, the long time under anesthesia — all of those things concerned me. And I should add, because it was a factor, I am married, and my husband -- he was supportive, he said “Whatever you want to do, I’ll support you” -- but he was actually very concerned about things like the length of the surgery. For example, for a DIEP reconstruction, which uses tissue from the abdomen, I was told that would be for me like a twelve-hour surgery. And that concerned him a lot. He was kind of hoping I would opt not to have reconstruction, which honestly, although we both felt it was my decision, it was very helpful for me to feel that he was going to be very comfortable with my choice.

Jamie DePolo: Okay. Okay.

Barbara Kriss: And I’d add one more thing, finally. I met a woman through a friend who was someone who at the time of her bilateral mastectomy, because of other medical conditions, was told by her doctor, “You should not have reconstruction at this time. We can delay it and you can have it in a year.” And by about six months after, when she was actually better and she could have later had the reconstruction, she began to realize that she was really glad she hadn’t had it and that she felt really comfortable wearing light-weight breast forms, and she just had such a feeling of freedom. She was a lovely-looking woman, she looked perfectly regular and normal. And that was a very reinforcing thing for me to meet her, right at that time. So all of those factors had a part in my decision.

Jamie DePolo: Okay. Now, I know some women on our boards and some women who have also written in have told us that they feel some pressure from their doctors or perhaps their family members or loved ones to have reconstruction, or it’s just assumed that they would want to have reconstruction. Did that happen to you at all?

Barbara Kriss: You know, I feel that I was very fortunate because this is really a very typical thing, and I’m interested that you even have board members who have experienced this. I was lucky, I think, because after my first cancer I wound up not needing a mastectomy at that time, and so it was only later when I had the second cancer that I decided to have the bilateral, but I had gotten to know my surgeon pretty well by then. And I don’t know whether perhaps because of that or just her nature, at any rate she never pushed reconstruction on me. In fact, I chose to explore my options and had to ask her for a referral. But I gather this isn’t very typical. And also because of the other things I mentioned, my husband and also my grown sons were very supportive, so I didn’t feel pressure from either doctors or family or friends.

But this is something that actually at BreastFree, my website, is one of the most common comments that I get from visitors, who write to say how much pressure they feel. And I actually, I just got a message about two days ago from a woman, and I’ve got her quote in front of me because it really struck me. She said, “None of my providers offered going breast-free as an option, and that floors me and disappoints me.” She was someone who, from her message, it was clear that she had been very clear about her wishes and without her insistence, they were not going to, you know, even offer that as an option.

Jamie DePolo: What advice would you give to a woman who is facing that kind of pressure? What’s the best way to handle that?

Barbara Kriss: That’s a tough question. I think it’s important to really be very clear with the doctor and assure the doctor that you’ve thought this through. Some people have told me that their doctors then will insist that they’ll be unhappy without reconstruction. And again, I guess the best thing I could recommend is just to really be clear that you’ve considered that and you feel that you really will be fine, and in fact you might be unhappy with reconstruction.

And as doctors know, but maybe it would be worth bringing up, for almost every woman there is the possibility of delayed reconstruction. So, by deciding not to have reconstruction at the time of your mastectomy, you’re not committing yourself forever to live without breasts if you change your mind. And this does happen. I hear from women that sometimes a year, two, or three years down the road, they realize that they’ve never really adjusted to the feeling of being breast-free and being flat. And then they can then go back and have reconstruction. So, you’re not committing yourself forever.

Jamie DePolo: All right. That actually brings up a question, too, because I know sometimes, well, not sometimes, but women, if they do not want reconstruction, there are things that perhaps they may want to talk to their surgeon about. For example, having symmetrical scars and making sure that there’s no extra skin so everything looks good aesthetically. It’s not lopsided or raised or lumpy. Would you talk to your surgeon any differently if you thought, “Well, maybe like three years down the road I might want to have reconstruction?” I mean, would it be a different type of end result?

Barbara Kriss: Well, I’ll tell you how I felt about it. As I understood it, if you have what’s called a skin-sparing mastectomy, some surgeons, where they have a patient who doesn’t want reconstruction, might say, “Well, let me leave the extra skin in case you change your mind.” And I’m not sure about this, but I had understood that after a certain amount of time the skin would not be viable anyway, that if you waited longer than a year, that might be an issue.

But, in any event, I felt that if I was left with folds of skin on my chest, I felt it would be unsightly and even potentially a little uncomfortable to wear breast forms over that, and I felt that it would make it less likely that I would be happy without reconstruction. So, I asked my surgeon — and I recommend this to people who feel that they don’t want reconstruction and feel quite convinced of this — I asked my surgeon to please give me the most cosmetically-pleasing result possible, with just what you said, with no extra skin and symmetrical scars, if someone’s having a bilateral mastectomy.

And this was my regular breast surgeon (in my case, I didn’t have a plastic surgeon involved), and she did exactly what I asked, and I think it really helped my initial recovery and perception. And when I first looked at myself, I thought I looked fine — the surgical site was very smooth and flat, and I did have very thin symmetrical scars. And I think this was really helpful. And as I say, even in that case, delayed reconstruction is possible. Skin can still be stretched along with muscle, which would be necessary for implants, and flap reconstruction is still possible. Although, if someone really wants reconstruction, it’s better to do it at the same time.

But even for those who have any doubts, who are on the fence about it, it might be helpful to live without reconstruction and see how it feels, knowing you could change your mind. For someone like that, if they’re really on the fence, maybe leave the extra skin. There are options there. And it’s something that’s very important to discuss with your surgeon, so you know what approach he or she is going to take when they do the mastectomy. Because I’ve heard from people who were not clear about removing the extra skin even though they were clear about not wanting reconstruction, and their surgeon then left the extra skin. I should add that for women who have that happen but ultimately decide they still don’t want to have reconstruction, who don’t want to have delayed reconstruction, there is a minor procedure that you can have that’s usually on, I believe, an outpatient basis, most often done by a plastic surgeon, during which that extra skin would be removed.

Jamie DePolo: Okay.

Barbara Kriss: So, in the worst-case scenario that you wound up with a surgical result you didn’t like, you could still have that repaired with a very minor procedure.

Jamie DePolo: Okay. Now are there surgeons that you know of that specialize in a mastectomy without reconstruction, they’re familiar with creating the best cosmetic results possible, or not? I’m really curious.

Barbara Kriss: I’m not really aware of that. As I say, I was fortunate because my surgeon seemed to do that very well. But it’s something worth talking about with the surgeon, just to see how receptive they are to giving you a good cosmetic result, and some might very honestly say, “I do a lot of surgeries with reconstruction and I tend to have the plastic surgeon take over.” In which case, actually I have known women who have asked to have a plastic surgeon, even women who are not having reconstruction, who have asked to have a plastic surgeon come in at the end of the mastectomy and close up the site and neaten it up and create the best aesthetic result possible. And those women have tended to be very happy with their results.

So that’s an option. I suppose there might be some concern, you don’t want to insult your surgeon. You have to think about how you ask that question. But this is your life and for a woman facing this, it certainly might be worth pursuing.

Jamie DePolo: True. It’s your results and you want to make sure that you get what you want.

Barbara Kriss: Right. Right.

Jamie DePolo: Along those lines, too, I know on your site you have before and after pictures, correct?

Barbara Kriss: Yes.

Jamie DePolo: And I think that is hugely helpful, too, because I know some women have written to us saying, “I’m pretty sure I don’t want reconstruction but I’m not really sure what to ask for instead. Like, what is a good result?” And so I think those photos are extremely valuable, and for anyone who’s listening, again, Barbara’s site is BreastFree.org, and you can see results that people are very happy with. And so we thank all those people and you, Barbara, who have donated those photos because I think it’s very helpful.

Barbara Kriss: Thank you. And I do want to say actually that most of the women who contributed those photos are women that I met here at Breastcancer.org on your Discussion Boards where you have, as I think you mentioned at the beginning, you have a forum, which is Living Without Reconstruction After a Mastectomy, and it’s a wonderful forum. It was one of the early things that I found that helped me meet a community of women, also many of whom contributed stories to my website. And I think of it as a really wonderful collaboration that’s happened.

Jamie DePolo: Yes. Exactly. We’re always happy to have synergy like that when the outcome is good and people are helped. That’s wonderful. Now, are there any special recovery issues that women who opt for no reconstruction face? Anything different that you know of?

Barbara Kriss: I would say, in general, women who don’t have reconstruction, as you’ve gathered, have easier recoveries and less pain than if they’d had reconstruction, simply because it is a simpler surgery. And even a woman who is having implants, for example, almost always the procedure would be to have tissue expanders inserted under the pectoral muscles, and so naturally that’s a more invasive surgery and likely in the short term to cause more discomfort. In the long term, most women do fine with implants. But with the simple mastectomy, I think the recovery tends to be faster and easier.

I would say sometimes — in all cases, women who have and don’t have reconstruction — there can be a natural accumulation of fluid, and when it’s large enough it’s called a seroma. And the main difference, women who have reconstruction, because they’re not totally flat, they may not notice it as much, whereas if you’ve got a totally flat chest and then you have some fluid accumulating, you’re going to see it and it might look a little alarming. So it’s not really any different than an outcome that would probably happen if you’d had reconstruction, but you’re just more aware of it.

Jamie DePolo: Okay. Okay. That’s good to know. And I know you also focus on this topic on your website as well, which is getting dressed. And do you have to think more about getting dressed? Is it no big deal if you don’t have reconstruction, and I guess, if you could answer that in two ways, one from the point of view of someone who wears breast forms and the point of view from somebody who doesn’t.

Barbara Kriss: Yes. Yeah, that makes sense. I would say initially, when you’re first getting used to not having breasts and trying to find a new normal and even in some cases trying to decide whether or not to wear breast forms, there’s a period of trial and error. But I think for women who wear breast forms, they can in general dress just as they did before. For example, I like to wear fitted T-shirts, you know, during the day, fitted cotton T-shirts. And afterwards, I still wanted to do that. And even though they are kind of fitted, I do wear breast forms, and I wear all the same T-shirts that I wore before and dress in the same way.

If you’re someone who was accustomed to wearing very low-cut things and showing cleavage, that obviously you can’t do any more. So, for some women that’s an adjustment, and to try to figure out — one concern that some women have is that in certain tops they are concerned that if they bend over there might be a gap, and people could see down their chest and there’s self-consciousness about that. And again, I would say that definitely it’s initially a bit of a challenge to figure out what works for you and finding the tops that you feel secure in, you feel comfortable, and you’re not feeling self-conscious in any way. But, in general, other than wearing very low-cut things, you really can wear pretty much anything you wore before with breast forms.

And those women who choose to go flat, they may find that there are certain — I’ve heard women say that certain clothes that have darts or some other way in which you need to have something to fill out the top, that they either have to alter those clothes or they can’t wear that kind of thing. And some women who go flat really are just, like, they feel like this is who I am and they’re not trying to camouflage it in any way.

Other women who go flat, they don’t really want to wear breast forms, they’re more comfortable without them, but they may still not want to draw attention to themselves. And for those women, I’d say there are a few very obvious things. Scarves can be great — an artfully arranged scarf can really cover a lot of things. Printed tops tend to distract your attention and you’re not as likely to notice if somebody is very flat. Also some women say wearing jewelry, a chunky necklace or even earrings or something, just something that pulls your eye away from the chest.

And finally, I would say that one of the most interesting things that I hear from most women who go flat, who are initially, when they go out in public, they’re feeling self-conscious, and they’re often surprised to find that nobody seems to notice. Sometimes people will say things like gee, have you lost weight, or something of that nature.

So, in general, I think people do well and they can wear most things. Sometimes there are challenges with swimsuits, but nowadays there are a lot of just even regular swimsuits that have little pockets for inserts, either for enhancement or modesty pads. And women who have had mastectomies who want to wear breast forms can insert little breast forms in there, so they don’t even necessarily need to wear a mastectomy bathing suit.

Jamie DePolo: Now do you know of a lot of women, say if they had a single mastectomy and opted for no reconstruction, I assume some people might be concerned about balance, and do you think most of those women choose to wear breast forms or no, or is it every which way, all up in the air?

Barbara Kriss: I do think, this is just anecdotal, but it’s my impression that most women with unilateral mastectomies do choose to wear breast forms. And in some cases, especially if the remaining breast is large, that’s about the only instance — there are some old-fashioned ideas that if you’ve had a bilateral mastectomy you still need to wear breast forms for some kind of balance or back issues or posture issues. But once you’ve had a bilateral, it’s not necessary at all. And in fact, I feel I stand up straighter now because the breast forms I wear are lighter in weight than my breasts were.

But for women with unilateral mastectomies, especially if they have a large remaining breast, it is true that there can be, sometimes, balance issues. They may feel more comfortable wearing a breast form on the other side. And I feel that more often women do. If women were small-breasted to begin with and they have just one breast removed, a lot of those women feel, sometimes they’ll wear breast forms at work or out in public or whatever, but when they’re home, they won’t wear them and they don’t experience any issues with back problems or posture or whatever.

And then there are some women who just say, I’m just going to go flat. And again, amazingly, people say it’s just amazing how little other people seem to notice, even though they might look in the mirror and say, “It seems obvious to me that the two sides are really different.” So, as I say, most women with unilaterals I think do opt for breast forms, but some don’t.

Jamie DePolo: Okay. And I guess one last question before we go. Some women have said they feel outcast, a little bit isolated, because they’re considering having no reconstruction. And now we have your great website, we have the Discussion Boards on our site. Did you feel that way, and how did you go about finding a community? I mean, what would you recommend to somebody, besides the two websites. Are there other things people can do?

Barbara Kriss: Well, as I described a little bit, because I had just these particulars of my own history with my mother-in-law, meeting a woman early on, and also because my doctors were very supportive of me, which I gather these days is not as common, so I did not feel very isolated. But still, I felt that — so, before I made the decision I think I felt like I had some input and I felt pretty comfortable. But afterwards, I still found I didn’t know where to look for… you know, I went to a mastectomy shop, but I wanted more support for how to live breast-free, how to find creative solutions, how to look for lighter-weight breast forms, where to locate things online. So, obviously, that’s why I created my website, because I felt that it might be helpful to other people.

And the most common comment that I get from people who contact me is how isolated they felt and how helpful it has been to find sites like mine and like yours. Some women seek out live support groups. Often in those instances the majority of women will have had reconstruction, though, so I’m not really sure that helps. Sometimes, I’ve heard that actually increases the sense of isolation.

So, I’m not really sure what else I can recommend. But my hope is that through the work that I do and the forum that you’ve made available and other information on your website, I hope that the balance will shift a little bit and there’ll be at least more consideration, and doctors will include non-reconstruction in the list of options after a mastectomy so people will feel less isolated right from the beginning of the process.

Jamie DePolo: Okay. Now do you know of, just quickly, do you know of any support groups that specialize or are focused on women without reconstruction? Do you know if any of those exist?

Barbara Kriss: I wish I did, but no, I’m not aware of anything.

Jamie DePolo: Okay. Okay. All right. Well, thank you so much. Barbara Kriss is the founder of the website BreastFree.org. It’s devoted to presenting no reconstruction as a positive alternative to reconstruction, and Barbara, thank you so much for joining us today. It’s been very helpful. And I hope maybe we can get you back in maybe 6 months and we can talk about, we can explore some other topics in this area.

Barbara Kriss: I would love that. And thank you very much for having me.

Jamie DePolo: All right. Thank you.

Barbara Kriss: Bye-bye.

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