reconstruction and no reconstruction -- forum names

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BikerLee
BikerLee Member Posts: 355

Why does this forum have to be called

Living Without Reconstruction After a Mastectomy

I feel like the title feeds into the bias that we should be choosing recon... and if we're not, we're having to figure out how the heck to live -or something.

I think the forums should be called

Mastectomy without reconstruction

Mastectomy with reconstruction

And that's that.

I suppose another option would be

Living Without Reconstruction After a Mastectomy

and

Living With Reconstruction After a Mastectomy

Seems like loads and loads of women struggle with reconstrcution...  complications and challenges galore...

But, parity please!  So many of us struggle with these decisions, and I think this is one place where titles shouldn't feed into biases we already face out in the wild...

THANKS!

Lee

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2012

    BikerLee, thank you for your suggestions. We'll review the forum titles, and look forward to hearing other members' perspectives too.

    • The Mods

  • River_Rat
    River_Rat Member Posts: 1,724
    edited November 2012

    I agree with BikerLee.  The title, 'Living Without Reconstruction After a Mastectomy' somehow makes it seem like this was something I was sentenced to rather than something I chose.  Granted not everyone that hasn't had reconstruction made that as a first choice - some had failed reconstructions or couldn't reconstruct for various reasons.  But if the forum was simply named 'Mastectomy Without Reconstruction' I don't feel that it would seem weighted in any direction.

  • Outfield
    Outfield Member Posts: 1,109
    edited November 2012

    I'm with River Rat and Biker Lee.  I wouldn't so much care which of Biker Lee's alternatives, or even something altogether different, as long as the two categories are presented with words that don't imply inequality or that one is desired over the other.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012
    As someone whose recon failed and chose not to pursue further surgery, I now identify myself as a flattie. I am okay with any of these name changes. However, I know there are women who hang around on the non-recon forum either because they are waiting for recon due to an infection, medical issue, or failed recon they are waiting to redo, etc. It isn't by choice they are flat at the moment and don't intend to remain that way, but they still need info and support about prosthetics, clothing, practical and emotional issues related to being flat for a while.




    Part of me would prefer to totally remove the word reconstruction from the non-recon forum title for something more positive. How about "Living Flat After Mastecomy"? It refers to the body but implies dealing with issues.
  • Erica3681
    Erica3681 Member Posts: 1,916
    edited November 2012

    While I don't have a problem with the name as it is and don't see it as somehow pejorative, I would be fine with a change such as "Mastectomy Without Reconstruction." But I would have a problem with Tina's suggestion, "Living Flat After Mastectomy." While some women truly live "flat" (i.e. don't wear breast forms) once they've had a mastectomy, I think a name like that would make those of us who wear prostheses (breast forms) feel unwelcome. For as long as I've been on the boards, the phrase "going flat" has referred to women who choose not to use breast forms. "Living flat" would likely be interpreted by many women to mean the same thing.

    I agree with Tina's impulse to find a positive phrase that describes the choice women who don't want reconstruction make, but unfortunately I don't think "living flat" is it.

    Edited to add: One of the functions of a forum name is to enable newcomers to the Discussion Boards to find the forums that have the information they seek. The prior name of this forum was something like "Reconstruction Alternatives and Options for Prostheses," which didn't clearly indicate that the forum was for women who had had mastectomies but hadn't had reconstruction. I was among those who urged the selection of a more descriptive name. 

    After the old forum name was replaced by the current one, there was a striking increase in the number of women who found the forum. So, I would urge that any name change be descriptive and inclusive of all women who might benefit from the information and support offered on the forum.

  • Lily55
    Lily55 Member Posts: 3,534
    edited November 2012

    I don´t like living flat as a concept and I am living (or trying to) lop sided which I hate.  The lack of symmetry and sameness REALLY bothers me - I cannot look at both sides of my chest unclothed so feel totally split, looking at all makes me feel ill......and like a freak.....I don´t like how I feel but have to be honest and as I am so uncomfotable post radiotherapy it is a constant awareness of how abnormal and mutilated I am .........so for me I would like this section to cover those of us with only one breast too please.......

    My vote would be Mastectomy with reconstruction or Mastectomy without reconstruction

  • DLL66
    DLL66 Member Posts: 700
    edited November 2012

    I think that "Mastectomy without reconstruction" is a better name for the forum. I agree that choosing not to reconstruct is a valid choice and the current forum name does imply that one is going against the expected choice.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited November 2012

    I've been "living without" for almost 2 years now. To me the name does imply one will have challenges & problems. I had very few. I say change it.

  • Frapp
    Frapp Member Posts: 1,987
    edited November 2012

    When I was scheduled for my bmx, I found it confusing as to where I would post my questions. I knew I was not a candidate for recon but just didn't know where to post my questions. I think a change is definitely in order. Thanks mods.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited November 2012

    The other thing is that "Living without reconstruction after mastectomy" is just too wordy. Ideally it would be "Breast Reconstruction" and "Alternatives to Breast Reconstruction." ETA: I would opt for something neutral to not sound patronizing or insincere - the more neutral the more accepting, IMO.

  • greenfrog
    greenfrog Member Posts: 269
    edited November 2012

    What is wrong with having a Breast Reconstruction section and a Mastectomy/Breast Free section?

    As a non-reconstructer I don't see the point of having reconstruction mentioned in the title at all.

  • DLL66
    DLL66 Member Posts: 700
    edited November 2012

    greenfrog, I think that is an even better suggestion for forum names.

  • BikerLee
    BikerLee Member Posts: 355
    edited November 2012

    thanks everyone for posting... what i see here is a clear need for a name change...  

    and there are loads of options...

    there's mastectomy itself - what to expect from surgery etc...

    then there's what happens after the mastectomy - immediate reconstructure or closure....

    maybe

    Mastectomy with breast reconstruction

    Breast-free after mastectomy

    I like the parallel structure of 

    Mastectomy with breast reconstruction

    Mastectomy with no breast reconstruction

    But I also like the idea of not having to mention reconstruction at all....

    Breast-free after mastectomy?

    Breast-less after mastectomy?

    Finally - Lily - I'm so sorry you are struggling so...  Your feelings about assymmetry really strike a note with me - that was a HUGE part of my decision to go bmx....

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited November 2012

    I like the name just as it is. I think the name before that was confusing for some,as we got quite a few posters who really belonged in the Mastectomy with Reconstruction posting in our no reconstruction area. Personally, I don't like the Breast-free options. I don't like Alternatives to Breast Reconstruction either. That makes me think it sort of shuts out those waiting for reconstruction and can't get it right away.

    I think we have more people finding the right forum with this name.

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