Website for women who choose NOT to reconstruct

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Erica3681
Erica3681 Member Posts: 1,916
edited June 2014 in Living Without Reconstruction After a Mastectomy
I've already posted about this in the midst of another thread ("bathing suit dilemma"), but a couple of women suggested I create a separate post, so here goes:

I've been thinking for a while that, along with this forum, there might be a need for a separate website devoted to women who choose not to reconstruct as well as for those who are trying to decide whether or not to reconstruct. I've now created such a site. It's called BreastFree and can be accessed at http://breastfree.org .

My plan is to use the knowledge I've gain here and elsewhere to create a site that will present the option of NOT having reconstruction in a positive way and will also present information in a more systematic and permanent way than is possible on this Discussion Board. As you know, over time many of the wonderful threads here disappear and a lot of great information and advice disappears along with them.

I have NO desire to compete with breastcancer.org. Far from it. I love this site and these Discussion Boards. In fact, I plan to feature a link to breastcancer.org on my site and will encourage women to check it out and join the Discussion Boards.

As you'll see if you check out BreastFree, among the things I plan to focus on will be helping women sort through the many options for breast forms, bras, and clothing. I'll also include personal stories of women who have chosen not to reconstruct, plus photos of women after mastectomy surgery as well as women in clothing, both wearing breast forms and going flat.

So far, I've completed the Homepage and the "Deciding NOT to Reconstruct" page. I've also posted my story on the "Personal Stories" page. I have room for many more stories!

I'm working hard on the site and hope to have more content up very soon. I would welcome your contributions and ideas. A number of women who saw my earlier post have already offered to contribute stories, photographs, and suggestions for bras and breast forms. I want to fully represent our diverse community of women--young and old, unilateral and bilateral, petite and plus size. So please let me know what you think of the site. You can respond here or PM me. I look forward to your feedback.

Barbara
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Comments

  • wallycat
    wallycat Member Posts: 3,227
    edited July 2007

    YAY!!! I am sure it will be a glorious success!

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  • DWS43
    DWS43 Member Posts: 56
    edited July 2007
    I looked the other day and it looked like it was going to be great. You made so many good points on the first page I concluded it would probably be a great resource for many once you have it up and running.

    D
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  • mikim
    mikim Member Posts: 39
    edited July 2007
    Erica
    I think breastfree is an excellent idea.
    I have just been diagnosed 5 weeks ago and cannot imagine any surgery besides the masectomy which is being suggested.

    Wishing you the best.
    Maybe some great sponsors to come on board and also imagining lots of great personal stories.
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  • MzzHope
    MzzHope Member Posts: 49
    edited July 2007
    Erica,
    This is just wonderful! Thank you so much for investing your time to do this.This will be a wonderful resource for all of us!
    Best of luck,
    Hope
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  • LiveForToday
    LiveForToday Member Posts: 311
    edited July 2007
    Barbara;

    You are one talented woman!! You have been so helpful to me about a number of topics! I wish you all the best with this site.

    huggs, Sherry
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  • getgig
    getgig Member Posts: 3
    edited July 2007
    Barbara,
    Great idea, I'll be a frequent visitor to your site.
    G.
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  • getgig
    getgig Member Posts: 3
    edited July 2007
    Barbara,
    I think I replied to the wrong post, so here's a second try. You have a great idea and I know it will be very helpful to many women. I'll be a frequent visitor to the site, thanks so much.
    G.
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  • tos
    tos Member Posts: 376
    edited July 2007
    What a wonderful idea. I know I'll be a frequent visitor.
    Good luck to you,
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  • RSA
    RSA Member Posts: 3
    edited August 2007
    Barbara,
    Thank you so much for this very needed site. I know its under construction but from the initial page set ups you are right on target. I am very comfortable with my decision after bilateral surgery 14 months out. However, I have struggled with the aesthetics and lack of appropriate clothes and other resources during that time. RSA
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  • geebung
    geebung Member Posts: 1,851
    edited August 2007
    Erica,
    This is a fabulous idea! Thankyou so much for starting the breastfree website - it's going to be great!
    As I am not sure how to start a new thread, I will ask a question here: When I was diagnosed and scheduled for a mastectomy & SNB, I had very little time to think about reconstruction and my brain was numb with both fear and denial. So I asked my surgeon to do a skin saving mast to give me options when my mind was clearer.
    I am beiginning to think that I don't want reconstruction but I want to feel good about my scar. Being flat is not really a concern but I would like to be neat! My scar is an ugly, jagged thing, with an annoying little "dog's ear" where they took the sentinel nodes out. Do you think it would be possible to have it tidied up a bit with further surgery? Has anyone else had this done? If so, how long after the mastectomy did you wait?
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  • Erica3681
    Erica3681 Member Posts: 1,916
    edited August 2007
    Hi Geebung,

    I'm so glad you like the website idea. Regarding your question, someone posted not long ago (but I can't remember where; maybe someone else will) about going to a plastic surgeon to have her scars neatened up, so it's definitely possible. I imagine a PS might try to talk you into reconstruction instead, but if you were clear about what you wanted, I don't see why it couldn't be done.

    I admire you for keeping your options open but if you've now decided that you don't want reconstruction, I'm sure you can find a PS who will give you a more cosmetically pleasing result.

    Barbara
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  • SusaninSF
    SusaninSF Member Posts: 1,213
    edited August 2007
    Geebung,

    If you find out anything about the scar cleaning up surgery, I'd like to hear about it. At this point, I'm too sick of surgery to do anything but at some point I may. I didn't ask my surgeon to save any skin, in fact, during my last surgery, I asked him to make my scar as flat as possible but it is still an ugly, jagged trench across my chest, not a flat clean scar. I thought maybe that was the best that could be done but perhaps that isn't true. Maybe he thought I'd want to try reconstruction again at some point in the future.

    Thanks, Susan
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  • geebung
    geebung Member Posts: 1,851
    edited August 2007
    Thanks Susan & Erica,
    I'm with you about further surgery at this stage Susan but it is hard to look at my scar. I have seen photos of other women's mastectomy scars and they are so neat! Will let you know if I find out anything but it won't be for at least a few months yet.
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  • Erica3681
    Erica3681 Member Posts: 1,916
    edited August 2007
    Geebung and Susan,

    Here's the post I was thinking of. It's at the bottom of page 2 of the thread entitled "No reconstruction- Happy w/your decision?" and was posted by scs. Here's the relevant part of the post:

    I, too, had bilateral mastectomy without reconstruction (Stage 2A right side and prophylactic on left..58 years old) And had dog ears on both sides and in middle. Waited a year to decide if I wanted reconstruction (was considering DIEP) Decided to have plastic surgery for scar revision;still have the option for further surgery/reconstruction. My ps also "contoured" my chest. I now have nice pecs and fullness around the upper chest without the dog ears. Do have cavities; but they are not noticeable in clothes. I wear high necked regular bathing suits (important because I am a sailor and grandmother of beach goers/swimmers.) Almost no one looks at my chest! I am very comfortable and content with my decision.
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  • starzhere
    starzhere Member Posts: 162
    edited August 2007
    Barbara,
    I haven't been here in a while. I am so impressed with your site. You are an awesome woman and writer!

    Elaine
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  • Erica3681
    Erica3681 Member Posts: 1,916
    edited August 2007
    Hi Elaine,

    Nice to see you on the boards. If you're interested in contributing a story or other info to the site, please let me know. I'd love to have your input. You can PM me. Thanks!!
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  • rumoret
    rumoret Member Posts: 685
    edited August 2007
    Barbara,
    I bookmarked your website and can't wait for all of your future sections to come to life. JUST GREAT!

    Love,
    Terry
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Barbara, I just visited your site. It's beautiful! So professionally done.

    I am looking forward to see it up and running.
    Shirley
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  • biondi
    biondi Member Posts: 223
    edited August 2007
    hi erica, miss no recon here..love your site. great job! you once said you would like to see me in my hip hugger jeans, tight top, long earrings, red lipstick, and big shades, well, if i can get a photo together, ill be happy to send you one. (my new style after mastectomy and a little weight loss)..androgynous me and BOOB FREE! BIONDI
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  • lisacp
    lisacp Member Posts: 15
    edited August 2007
    Hi Barbara,
    I'm new here and have just started to post. Reading the posts on this forum has made me feel not so alone even though I haven't regreted my decsion. I will be a frequent visitor to your site. What a hero you are!
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  • Erica3681
    Erica3681 Member Posts: 1,916
    edited August 2007
    Terry, Shirley, Biondi, Lisa,

    Thanks so much for your positive comments about the site. Without the women on these boards, the site really wouldn't have been possible. Most of the stories and photographs are from generous women I've met here.

    Biondi, I've now posted three sets of photos on the website. More are coming! I remember our "conversation" a while ago here when I said I'd love to see your picture. Now I have a place to put it!! If you'd like to contribute, please send me a PM.

    Barbara
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  • wallycat
    wallycat Member Posts: 3,227
    edited August 2007
    Erica...YAY!!
    The pix look great (I sure wish I didn't have such a barrel shaped rib cage ).

    I'll work on getting DH to take the bare ones and send them soon.
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  • marshakb
    marshakb Member Posts: 1,664
    edited August 2007

    Barbara, I love your website! Right now I have the uniboob but having that removed Oct 1. I can not WAIT to be flat chested!!!!!!!!!!!!!

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  • Erica3681
    Erica3681 Member Posts: 1,916
    edited August 2007
    So glad you like the site. Good luck with your surgery! Please keep us posted on how everything goes

    Barbara
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  • bezeiv
    bezeiv Member Posts: 5
    edited August 2007
    Erica,
    I was told about your site by one of my customers who I have helped over the years. I am the founder of The Woman's Personal Health Resource www.womanspersonalhealth.com
    I have dedicated myself over the last 8 years to providing well-fitting clothing for women who have had breast surgery, along with information and support to each customer. I placed your website link on my monthly email to my customers. One of them just wrote me and has information she would like to share with you. Her email address is: ccschuch@gmail.com She wanted to contact your website, but at this time there is no way to do that. I am sure she would love to hear from you.

    As you add information to your website, I hope you will consider either adding my link, or informing your visitors that we exist and are here to help.

    Good Luck to you.

    Barbara
    www.womanspersonalhealth.com
    bezeiv@gmail.com
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  • joanne_elizabeth
    joanne_elizabeth Member Posts: 499
    edited September 2007

    Do any of you go to a gym?  I find going anymore to be a trail -getting half undressed in the bathroom and shower.  What do you do?

     Thanks,

    Joanne 

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