Choosing nonreconstruction on the BCO web site?

MT1

Does BreastCancer.Org have any pages on choosing NOT to reconstruct, on opting out of reconstruction? If so, what words would we use to look this option up? I can't seem to find the pages I am looking for. Or any pages for that matter. Surely, there must be some information on this site.

And if there is not, I wonder if we might discuss what we would like to see. 

I for one would like acknowledgement that not all women opt for a prothesis as is described in this bullet point: 

Breast reconstruction is the rebuilding of the breast after mastectomy and sometimes lumpectomy. Reconstruction can take place at the same time as cancer-removing surgery, or months to years later. Some women decide not to have reconstruction and opt for a prosthesis instead.

This paragraph was found on this page: http://www.breastcancer.org/treatment/surgery

'Non-reconstruction' isn't even the word for people like me, I opted out of reconstruction and I don't want to be defined by it. But at the same time, I would like to see issues related to 'Going Flat' acknowledged and spoken to. I don't want to be too particular about the words we do use, because we have to start somewhere, but what words would a newbie use when using the BCO site that would help her to see that opting out is a growing option that many women are embracing without the need to 'opt for a prothesis instead'. 

 

Erica3681

There's a section called "Is Breast Reconstruction Right For You?" which deals with making the decision. Here's the link: http://www.breastcancer.org/treatment/surgery/reconstruction/is-reconstruction-for-you. I think that's the closest to what you're asking about.

momof3boys

Maybe start a thread "opting out of reconstruction"?

Moiralf

There is also a thread/forum here on going flat.

It has been going for quite a while so might not be active all the time. Does pop up on  a regular basis though.

Many women here  chose not to reconstruct and there have been a number of discussion about this. It is just a matter of finding them.

MT1

This thread is called 'Living without Reconstruction after Mastectomy', but what I am asking about is the over all Breast Cancer.Org site. My thought is that there isn't much of an acknowledgement of 'Going Flat' as an option on the overall BCO site, and as many women are choosing this option, perhaps it is time to address it head on.

indenial

Really, what I'd like to see is simply an amendment to that last sentence, "Some women decide not to have reconstruction and opt for a prosthesis instead." I feel completely unrepresented. I don't have a prosthesis and don't plan on ever having one. It should say something like, "Some women decide not to have reconstruction and instead go flat. Others opt for a prosthesis." The exact words are not important but I do think what IS important is validating the choice to go flat. I don't think it's even recognized as an option, either here on BCO or out in the world. The assumption is that if you opt out of reconstruction, you will use a prosthesis.

I'm only a few weeks out from surgery but I haven't had any problems going flat. I've actually had people ask me if I had my surgery yet, or what kind of surgery I had! LOL!! I want to say, "Uhhh look, notice anything missing??" It does make it easier to realize how completely not noticable it seems to be, but I still get annoyed by the prosthetic & reconstruction comments!

MT1

Indenial, I am right there with you!!

cinnamonsmiles

I just looked at the bc.org informational pages on the website. I do think they could add a little more about it. Like a few things about going flat...especially the pressuring from others to get reconstruction, the emotional side for many of us about going flat, etc. It does seem like breast reconstruction has a lot more information compared to non reconstructing, but there actually is a lot more to it than nonreconstruction.

I don't know if I am making any sense.My brain is fried today.

Outfield

Indenial, that's it for me.

I don't need the personal validation, but think of all the women who have posted on the "rant" thread who got a lot of flak for deciding to go flat.  That's just so crazy wrong.  

It's so demeaning and objectifying to have everything in the statement be related to how a woman will achieve the appearance of a breast post-mastectomy.

Moderators

Thank you all for your suggestions! We'll bring this to the attention of the main Breastcancer.org editorial team.

• The Mods

Momine

Cinnamon, agree. It also seems to me that more women skip recon than get it, so there ought to be more info about the non-recon options. Apart from the flat option, a link to breastfree.org would be good as well as links to alternative foob sources/solutions.

MT1

I do think that women who opt out of reconstruction and do not care to wear prosthetics, face issues that reconstructed women do not. If the BCO site would acknowledge this as an option and address our concerns, those who are newly diagnosed and looking for options and solutions might be able to read and access a full array of options, rather than 'opting to wear prosthesis'. We face societal expectations that we cover up and make like nothing happened, the fears that others have when they make the connection that we are women without breasts, our doctors carry these same expectations and often push us to consider reconstructing our bodies for reasons of 'gender identity' or the loss of that identity. Many of us, do not have the same fears that these people have, we do not equate breasts with identity or femininity. Rather, we would like to get on with our lives as the gorgeous, empowered women that we are, especially in the face of the pressure to reconstruct.

Our doctors sometimes make decisions for us, without telling us beforehand, leaving skin for a future decision to reconstruct, and many doctors do not have the skills to do a gorgeous job and need to be held accountable. 

My suggestion to BCO and to new people opting out of reconstruction:

Research images of other mastectomies, bring 3 images to your breast surgeon or plastic surgeon, label them: unacceptable, acceptable, sought after.

Ask your surgeon about the fat under your arm(s), we call these 'dog ears' and is defined as fat is left behind, sometimes incisions end abruptly leaving a tab or 'dog ear'. A good surgeon will not leave 'dog ears' or 'kisses' under your arms.

Many doctors and family members push reconstruction, you may need to stand firm in your resolve to have mastectomy without reconstruction. Remember, this is your body, you need to live with the results.

crystalphm

These are all valid points. When I had to make my mastectomy choices, the only thing I found to be helpful was Breastfree and even there I would have wanted more personal stories perhaps, representing the choice of being flat and staying flat. But that said, make no mistake, that site was my lifeline and my first realization that women choose to not reconstruct.

I would like to see more on BCO so women clearly can find information about choosing to live flat, no foobs, no recon.

My doctor and social pressure had me trying to wear size 8's against my poor incisions 6 weeks after surgery, even the american breast cancer society sent me a puffy thing, the implication was that I could not be flat even to heal.

All I wanted at that time was conformation in writing that is was a good choice, an acceptable choice. Thanks all.

Erica3681

Hi Crystal,

There are several stories on BreastFree.org in which women talk about living flat, without wearing breast forms, at least they don't wear them most of the time. They include Mia's Story, LindaLou's Story, and the newest story on the website, Dee's Story. But I understand that you would have liked to read more from women for whom the decision to go flat was a focus of their experience.

I would welcome more stories. I'm always looking for women who choose not to reconstruct, feel positive about their choice, and would like to share their story with other women facing mastectomies. If you or anyone else is interested in contributing, please send me a PM.

cinnamonsmiles

I think that the statement "other options for not having reconstruction..." would apply to those of us that choose not to have reconstruction. I think this Forum covers those of who don't have reconstruction well. I really don't see the need to break up the Living Without Reconstruction After a Mastectomy into subgroups like...Those that wear prosthetics, those that don't, those waiting for reconstruction. I think the larger overall Forum does us just fine. I remember a lot of people would get confused with the old forum name. We would get posters who were getting reconstruction posting in the NON reconstruction forum. I haven't see as much lately.

I think we need to keep terminology straight as well. I consider the Forum, the larger heading, as in what bc.org states at the top here : Forum: Living Without Reconstruction After a Mastectomy.

It is hard to choose the wording for forums when there are over 128,000 people using this website. I think that no matter who each forum is worded, someone is not going to be happy. I understand this forum is for those that chose not to reconstruct and all the issues that go with that, including some choosing to wear prosthetics) and those that are flat while waiting to get reconstruction.

Then topics or threads follow beneathe it. I think splitting up this Forum into separate forums would be a bad idea. I feel I get all I need in here. Those of us who choose not to wear prosthetics can post here and get all the info and support I think I  need. 

Outfield

Cinnamon, this isn't about splitting up a forum.  It's not about the forums at all.  This is about including choosing no-reconstruction as a reasonable choice in the basic patient ed parts of the site.  Basically, current site content doesn't give it the same respect as reconstruction.  

sott

Hi all, I have not been on the boards for over a year, having had a UMX in 10/11.

This topic seems to match up with my current question.  I hope I'm not butting in on the discussion of the need for "flat awareness" on Breastcancer.org.

I am 65 and opted for no reconstruction. I had considered getting a reduction on the other side (38DD), but my BS gave me a glimpse of what that entailed and I decided not to do it. I was initially worried that I would feel unbalanced but, in spite of scoliosis, this has not been an issue. I got a prosthesis and bras but gave them away after 3 months when it just seemed too uncomfortable and a hassle to deal with them. So I've been going lopsided for 18 months and it hasn't really been a big deal. I find that very few people seem to notice (or if they do they don't make a big deal of it). I haven’t worn a swimsuit outside of the woman's gym. It's harder to mask the difference then, but since I've been in the sun my whole life I don't miss going to the beach anymore.

So my question is this. Recently I've had a strong urge to have the other breast removed. It's heavy, makes me wear a bra which I hate, and just doesn't seem to serve any purpose. I'm trying to understand the emotional basis for this urge. Has anyone experienced something similar? Part of me wonders if the decision to go lop-sided was a need to “thumb my nose” at anyone who might want to judge me for not having two matching breasts. Maybe I'm beyond that now? I've made my statement and don't need to anymore?? On the other hand, why should I opt for more surgery when I could just keep on with where I'm at? I've discussed this with DH who doesn't care if I have “3 breasts or none” but he, of course, can't really put himself in my shoes (or should I say bra?). Has anyone experienced these feelings and feel able to help me work through them? I know it's my choice but I'd really like to know WHY I feel this way before I actually act on it.

MT1

I knew from the start that it was no breasts or reconstruction. Knowing who I am means I understand that symetry is important to me, both visually and physically. I know that if I had had my right breast removed, that having a left, single breast would mean wearing a breast form to even myself out visually and weight wise. Now, I go flat everyday. I don't want to wear breast forms, again, for me, this would feel like I was asking myself to live up to standards that I do not align myself with. I feel as if my body is my own, I made a decision that works for me, although it is sometimes difficult (to find clothing, be perceived as a man or manly). Each of us is different. We make decisions based on what we have experienced and who we are. Personally, I do not like silicone, do not want it in my body, I do not have enough fat and cannot reconstruct my breasts from fat, nor would I want several scars on my body, nor do I feel it is justifyable to move muscle from here to there in order to make a semblance of a breast. I do not think this decision has much to do with age or marital status, either. This is about having a body that YOU can live with with as much ease and mental agreement that is possible. This is different for each and every one of us. I imagine you will need to suss this out for yourself, I hope my thoughts are helpful to you.

sott

Yes, they are MT1.  DH also brought up the symmetry issue and this is probably as close to identifying the root of my issues as I may be able to find.  I'll be seeing my BS soon for a followup and will be discussing it with her.  Hopefully she will have encountered this before and be able to provide some advice.  In looking back over my previous posts I see that I went through this same dilema last July but was focussed on how a swimsuit fit.  So it's been incubating for a longer time than I was aware of.

Moderators

Hi all! We've brought your concerns to the attention of our Editorial team and they really want to provide some content that you're asking for! They have some questions for you, so any and all imput you can provide will be really helpful in bringing this content to BCO!

From Editorial:

Thanks for bringing the lack of content on choosing not to have breast reconstruction to our attention. It definitely needs to be covered. As we talk to experts, we want to make sure we’re offering you the information you want. So far, we have this list of topics to cover:

• dealing with pressure from doctors/other women to have reconstruction
• emotional issues surrounding the decision
• talking to your surgeon before mastectomy if you plan to have no reconstruction
  • aesthestics (dog ears)
  • extra skin
  • is scar tissue in different places than it would be in a reconstructed breast?
  • are there different mobility issues than there are with reconstruction?
  • are there any long-term post-surgical issues with flexibility/mobility in the chest and arm? what about the remaining breast -- are there any back/shoulder issues to consider with a lack of symmetry? what if you want to have the remaining breast removed?
  • clothing tips
  • nipples: yes or no?

 Are there other topics you would like information on?

 Thanks again!

MT1

Scar orientation: some women perfer diagonal incisions, feeling they will be able to wear v neck clothing without showing scars.

Talking to insurance: mine called my use of a plastic surgeon to do my 'close' *elective surgery*, when my breast surgeon plainly stated I would not get the results I was looking for if she did my close. Seeking a flat, easthetically pleasing result is just as much reconstruction as building the semblance of breasts.

Finding support is also very important after you have had your surgery. Going flat is much different than either wearing breast forms or reconstructing a semblance of a breast. 

From what I have heard many doctors do not fulfill the wishes of their patients, one woman on our boards said, she changed her mind about reconstruction and told her doctor that she wanted to be flat, she woke with skin sparing mastectomy, so we need to make sure our doctors respect our wishes, we need to be quite firm in our communications with our doctors.

MT1

A friend who is not a member of this board wondered if you might cover DE-construction, this is what she said (she gave me permission to do this): 

For me, before my extraction, I was searching "without reconstruction", "implant extraction", "breastless" and "flat" I would search these and then add "after mastectomy". For me, I think I didn't find much because I don't usually go to breast cancer sites because I never had BC, just the mutation so that was probably part of my problem...maybe

indenial

I think something many of us crave when we are in the process of making this decision is pictures. Flat pictures (both bare-chest and clothed) are incredibly hard to find. I wanted to know what to expect, what I might look like, how clothes might look on me, etc. but only found a small handful of pictures. 

Another area to cover is types of mastectomies. My surgeon offered to do a skin-sparing "goldilocks" mastectomy which leaves a small breast mound formed from skin scraped down & folded up. I didn't choose this but when I was considering it I found almost no information about it online. 

MT1

Many women feel great pride in going flat and not wearing breast forms or prosthesis. 

This is a very important sentence. It needs to be said. 

carolyn1953

i had BMX in January. i had no mention from anyone concerning flat vs fake boobs. it was a "given" by the ACS volunteer, the fitter at the hospital, and the BS. after a time or two wearing the fakes i knew that was not for me. luckily i found a website that directed me to a great group of "flats". Cancer is life threatening. Treatment can be rough. should our priorities really be touting fake boobs and reconstruction?  thats a question each of us must answer for ourselves. i am 60 so perhaps my age influences my choice. i'd like to see the alternative of going flat at least put out there. i earned my scars. i can still dress up and look pretty w/o the fake boobs. all options should be in the forefront. That could lead to a true, informed decisions. 

cider8

I have an interest in de-constructing. I've read many stories about women whose implants just don't work and have to go flat. Not by choice, but circumstance. Others, of course, decide implants are not for them and want them out, would rather be flat. I am facing a new diagnosis of inflammatory breast cancer; I get my treatment plan tomorrow. I am facing the possibility of needing to deconstruct the DIEP breasts I worked so hard to get. So if I have to deconstruct it will not be my choice and I will have to cope with that. On the same note, I have read IBC patients are not recommended to have recon for a couple years and no skin sparing mastectomies. So perhaps some might feel being flat is not a choice either.



I may be off base here, being so new to IBC. I'm trying not to jump the gun, as my treatment plan has not been decided. But going flat a concept I didn't think I had to face.

Zenpatrol

Hi All,

I am a 10 year survivor and wore a prosthesis on the other side until this year when I had a second prophylactic mx. I had been thinking about chucking that prosthesis for good after getting "evened up."  I am now going flat with the support of a great group of other like minded women. I agree that the moderators could take a look at the wording on many of the informational pages on the site. On some pages it seems as though your choices are reconstruction vs. protheses after mastectomy. A little more verbage like, "a growing number of women are choosing to go flat after surgery", "many women also choose to not wear prostheses for comfort reasons or simply personal choice", "going flat after mastectomy can be a source of pride to many women after mastectomy" - would give that important THIRD OPTION.  Just clicking through the informational pages this verbage could be added under the Titles "Information for New Patients", "Sequence of Treatment", "Surgery", "Breast Reconstruction" and "Is Breast Reconstruction Right for You". Also another area of the website is the Support and Community Connections area where perhaps a group could be added for those who choose not to reconstruction AND not wear prostheses.  Just a few ideas - are there any other "pages" where we could show MORE CHOICES?  With BC having choices and the support of others to make our own choices is invaluable and empowering.

kbg123

I would appreciate it if the some of the verbage could be changed in the section under "Breast Reconstruction". The second paragraph states; "It's very normal to feel anxious, uncertain, sad, and mournful about giving up a part of your body that was one of the hallmarks of becoming a woman: a significant part of your sexuality, what made you look good in clothes, how you fed your babies". Can someone please do something about "what made you look good in clothes"? As a woman who had a double mastectomy without reconstruction this past December, I am proud to say that giving up the ladies has not made me look any worse in my clothes. I did a double-take when I read that four months ago, while looking on this site for information specific to my case. It made me look elsewhere, because that one statement seemed so unnecessary to me. We are beautiful from the inside out, flat or not, and shouldn't be faced with a lifetime of thinking we do not look good in our clothes because we chose to go flat. Thanks for your time.

Linda-n3

To the Mods: Thank you for looking into including more information on the patient education pages, and the suggestions from MT1 would be great to include as well as the topics you listed. This would at least acknowledge that non-reconstruction is an option, and that some women choose prostheses, others don't. The current page that asks "Is Reconstruction Right for You?" really glosses over the non-reconstruction option as a kind of "after-thought" - rather than presenting the information in a more balanced approach.



One thing that I realized is that reconstruction does NOT need to be immediate, the decision does NOT need to be immediate for most procedures. When a woman is making life and death decisions about TREATING the cancer, tossing in decisions about reconstruction can really be confusing and distracting from the main goal, to get rid of the cancer. Reconstruction decisions can be made later, in a more relaxed timing, with full attention to that aspect rather than adding to information overload, extra stress and anxiety.



Zenpatrol also has some good ideas as to where to include information on non-reconstruction and going flat vs. using prostheses.

Outfield

Mods,

I am so glad you are going to include this!  

I think there are so many sub-areas, but I really am looking forward to seeing that staying flat be presented as an equal option to reconstruction, and that it's clear that not everybody wears forms (although I will say once again, nothing against form wearers!).   

I may come up with something if I think about it longer, but it really seems like the major issues have been identified.

kathindc

Definitely more needs to be said about living flat.  I found very little about this and thought I was an anomaly.  It wasn't until after my surgery that I found MT1's thread "I look for other flat chested women. A rant" that I realized there are many of us out there.  I was proud of my surgical decision before but felt empowered to know I was not alone.  The topic needs to be put forth as more than a passing afterthought.  I had two months to do my research and must say I only came across one picture of a flat chested women showing her scars.  We are doing an injustice to those who come behind us by not getting the word out prior to surgery that there is a very viable third choice after BMX.