Choosing nonreconstruction on the BCO web site?

124

Comments

  • Ariom
    Ariom Member Posts: 6,197
    edited May 2013

    You're a cracker Bobo! You never fail to give me a laugh!

  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    Hmmm, Kylie's bum ... Now that might be worth going under the knife for ;)

  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    Mods, what kind of pictures are you looking for?

  • LindaKR
    LindaKR Member Posts: 1,577
    edited May 2013

    I read an article recently, wish I could remember where, that said that a much greater number in the US get reconstruction than in other countries, they particularly mentioned in European countries.  I'll see if I can find the article. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Decontruction.  I'm having trouble finding the right Forum, thread to ask this question.  Wonder if someone here can help.  I've had very small ( my choice) silicone implants for almost 6 years - and now want them removed.  Tired of always feeling like there is something "weighing" on my chest, strange feeling in pec muscle.

    QUESTION:  Can this be done in a PS office? Is it painful?  Do you need to wear a drain ( PLEASE, oh, please say NO) after they're removed?  Thanks.

  • Ariom
    Ariom Member Posts: 6,197
    edited May 2013

    Just saw your respose Momine, you're not wrong there! LOL

  • LindaKR
    LindaKR Member Posts: 1,577
    edited May 2013

    Sunflowers - you can join the Flat and Fabulous https://www.facebook.com/groups/FlatANDFabulous/?hc_location=stream Facebook site.  There are quite a few women on there that have undergone "de-construction". 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    thanks Lindakr, but I'm not on FB ( by choice) - will keep looking for answers.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited May 2013

    Hi Sunflowers,

    I hope someone who's had this done will fill you in about their experience. I know several women who have had it done and are very happy with the results. It's not major surgery but I doubt it can be done in the plastic surgeon's office. To get the best result, you'd probably want your PS to remove extra skin (so you can be smoothly flat) and also to remove extra scar tissue, as this might be contributing to pain, plus I think sometimes the PS can help reconnect the pec muscle where it's been cut, but I might be wrong about that. 

    You might want to start your own thread and call it something like "Deconstruction?" and then ask your question. That way those women who have had the procedure are more likely to see it and respond.

    FWIW, two women have contributed their stories about deconstruction on my non-profit website, BreastFree.org. They are Susan's Story and Joan's Story.

    Barbara

  • Starak
    Starak Member Posts: 536
    edited May 2013

    SunflowersMA - I think some of the women who frequent this thread have gone through deconstruction.

    http://community.breastcancer.org/forum/82/topic/789067?page=101#idx_3022

    I look for other flat chested women. A rant.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Thanks, Erica, I tried starting a deconstruction thread in this forum, got many views, but no comments.  I appreciate your post - guess I have to expect being an out patient in local hospital.  Didn't know the pec muscle was cut - ugh.  I regret the decision to go the reconstruction route, and in hindsight, realize it MADE MONEY for the PS, hospital, where I had the BLM.  Didn't go there for chemotherapy - and went to a different PS ( wonderful, wonderful woman) to finish the process.  Live & learn Wink

    Thanks, Starak, I'll check that thread.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited May 2013

    Sorry Sunflower, I didn't notice that you'd started another thread. I hope you get all the answers you need when you see your PS in June.

  • MT1
    MT1 Member Posts: 371
    edited June 2013

    I would like to see non-reconstruction represented on this page: 

    http://www.breastcancer.org/pictures/reconstruction

    I would like to see a 'satisfaction with non-reconstruction' page. Like this one: http://www.breastcancer.org/treatment/surgery/reconstruction/satisfaction

    I would love a page named: Is going flat an alternative to wearing breast prosthesis?

    this page should be linked in the left hand column, as are similar topics, found on this page: http://www.breastcancer.org/treatment/surgery/reconstruction

    'non-reconstruction' ought to be added to the downloadable content here: http://www.breastcancer.org/treatment/surgery/reconstruction/types/comparison-chart

    Non-reconstruction should be listed here too: http://www.breastcancer.org/treatment/surgery/reconstruction

    This sentence was taken from the first paragraph of the above linked page... If so, your doctor has likely told you about options to rebuild your breast or breasts -- a surgery called breast reconstruction. 

    My problem with the above is that many doctors do not offer advice about non-reconstruction.

    Non-reconstruction is -actually- reconstruction, and getting good non-reconstructed results is important to women's psychological health.Just because we have decided against reconstruction, does not mean we know how to talk with our doctors, how to tell them we have expectations and needs of the work they provide and that we dont want stellar results.

    I don't think it is useful to separate reconstruction from non-reconstruction as an option. Information about non-reconstruction should be just as previlent as info about reconstruction, page for page, easily accessed and available to all. Especially given the numbers of women who opt out of 'immediate reconstruction'.

    I happily sent pictures of my results to the admins and I am really glad that BreastCancer.org is open to adding to and changing their content. It means a great deal to me, as this site has been my main source of support through treatment. I look forward to the inclusive content that you add and will gladly continue to suggest or help in whatever way I am able.

    reconstruction, non-reconstruction, de-construction. All of it is construction.

  • Ariom
    Ariom Member Posts: 6,197
    edited June 2013

    Great job MT1,

    I totally agree with everything you have outlined there.

    I would be happpy to send in my UMX result, too.

    There does seem to be more women making this choice of non reconstruction. I know I spent time looking at photos on Breastfree, of ladies who'd had UMX and were proud to show it. It was very empowering, ad I thank them for being brave enough to make that choice, and brave enough to document it for other like minded women to see.  

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2013

    Thank you for your suggestions, MT1. We'll pass them on to the Editorial team, as always.

    • The Mods

  • crystalphm
    crystalphm Member Posts: 1,138
    edited June 2013

    MT, fantastic job, I agree completely! Actually it was the exact photos on BCO (the link you listed) that made me choose to not reconstruct, the surgeries were too much to even consider...

  • MT1
    MT1 Member Posts: 371
    edited February 2014

    Any progress?

    I just wanted to update with this most recent blog post. http://melanietesta.com/2014/02/the-grace-to-be-f...

  • Moderators
    Moderators Member Posts: 25,912
    edited February 2014

    MT1 and all,

    You asked for it, and we responded! Check out the new content on the main Breastcancer.org site on Going Flat: Choosing No Reconstruction. We're also hoping to be adding pictures in the near future!

    We hope you enjoy!

    --The Breastcancer.org Team

  • CassDugan
    CassDugan Member Posts: 100
    edited February 2014

    Awesome!  I had a partial mastectomy in May of 2013.  The surgeon was truly bewildered when I said that the only thing I wanted to criticize was the lack of support for no reconstruction as a viable option.  I was appalled that the facilities that I initially went to for an opinion & second opinion presented only reconstruction as a viable option, and heavily pressured me to think about a breast form (also didn't want) when I said, over and over, that I didn't want reconstruction. 

    MT1 - that you were sent for a psych eval is beyond insulting.  Good for you for sticking to your beliefs, and thank you for pushing to get this seen as a real option here on BCO.

  • Ariom
    Ariom Member Posts: 6,197
    edited March 2014

    Thanks Mods, that is fantastic!

    There are more and more of us deciding to forgo the reconstruction, and that text is exactly what we need to see before making that decision, or indeed, to reaffirm our decision.

    I am pleased you have directed women to the Breastfree site too. It is a really valuable resource. I used it when I was in the decision process, and am so grateful to all those women for allowing their photos to be there, it was such a help to me. Since having my "Dog Ear" revision recently, I have offered Erica before and after pictures so anyone considering having the same surgery has an idea of what the result could be like. 

    Thanks again to everyone involved for adding this valuable information to this site. 

  • kathindc
    kathindc Member Posts: 2,042
    edited March 2014

    Oh, it would have been so nice to have that before I decided to have a BMX.  Until I found the I look for other flat chested women.  A rant after my surgery I thought I was an oddity.  Nice to know there are more of us than I realized.  The Breastfree site was a go to in helping me realize that my choice was valid.  Thank you Mods for getting this done and a big thank you to Melanie for bringing this matter up!

  • gtgirl
    gtgirl Member Posts: 129
    edited March 2014

    I had no option with having reconstruction.  I am ok with not having reconstruction because I know it's not an option.  I did get fitted for my prosthesis and only wore it for a couple weeks.  I have sensations that I can't stand the bra touching the side of my skin.  I was told I should wear it by the fitting lady.  I am in PT right now and the PTA/massage therapist is really massaging my scar and the minimal cording that I have. 

    Tonight I am going to an event one side flat with a shirt that you can tell.  This is a big deal for me. 

  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited March 2014

    Dear gtgirl, I hope you have a GREAT evening. Best wishes with your healing and recovery. I promise you that although you may wear a shirt where "you can tell", from one "uni" to another - you will be amazed. People do not look. No-one is thinking about the number of breasts you have. You would need to walk in there topless for people to notice. Only if there is another lady in the room who has had mx and is scanning the room for a fellow mx-ee will anyone notice. I hope it goes really well. XXX

  • 16Christine
    16Christine Member Posts: 23
    edited March 2014

    Thanks, mods, for the new article.  I fall into the first category (health being a reason to avoid recon) because I had 3 cancers diagnosed at once. So treatment for all 3 came before niceties like recon and PT. Didn't get to PT till 7 months after first mx. With the second mx I went right to PT after the drain came out.

    Also, my first general surgeon advised against reconstruction. I remember my first preop appointment with her. She cited the high infection rate, said that for now, I needed the least risky procedure to enable me to move on to treat the other cancers. That almost worked. But I got a deep vein thrombosis from my port and that, plus a slow gyn-onc consult, delayed further cancer treatment a month. And I was way too weak to endure fills of TE's while doing a chemo-rad combo treatment for another cancer. Then it was a total hysterectomy for the endometrial cancer. It's a tough row to hoe, no matter what you choose.

    After my second mx, a different (breast-only) surgeon asked me, at the last postop appointment, if I didn't really want tissue expanders? I guess she felt she was doing her job. I'd never want any patient to feel she was not entitled to recon so I don't mind her asking. But I said no thanks, I'd had C-D breasts all my adult life and I didn't think numb flesh would be worth all the effort. Besides, after doing all that, suppose one of my other cancers returned? I don't feel like I have a lot of time to spend on elective surgery.

    Thanks for the clothing suggestions. I have to change my thinking from trying to minimize large breasts to finding ways (like lapels) to balance the chest and abdomen.

    I splurged on a Nordstrom leather moto jacket (50% off). It's not for anyone with a BMI over 23. But it's cool if you zip it half way up to make a slim waist. The top of the zipper pouches out into little air breasts. It's kind of silly for a 70-year-old like me, but it's my reward, along with a quilted leather Chanel-type cross-body bag, for all I went through in the past couple of years.

    I have one more body-image experience, but I'm just not ready to share it yet. It's kind of weird. Maybe someday.

  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited March 2014

    Wow Christine you really have dealt with so much, you deserve a wardrobe FULL of leather jackets with biker trousers to match. SmileBuying something that you look good in, feel good in is not silly, it makes a heap of sense.

  • 16Christine
    16Christine Member Posts: 23
    edited March 2014

    Hi feelingfeline -

    Cute cat in your avatar! Thanks for your message, all the way from Ireland to here in New Mexico.

    Yes, we have all been through a lot. Even when things go perfectly (does that ever happen?) almost any cancer is a life changing event. You find out who your friends are. I'm grateful to everyone for sharing their recon experiences, good and bad, otherwise I might have been talked into recon by my second breast surgeon. But I doubt it. I used to be an RN and I have a healthy respect for the damage surgery can sometimes do.

  • MT1
    MT1 Member Posts: 371
    edited March 2014

    Thank you BCO, thank you for being one of the first, if not THE first major breast cancer related informational web site to present information on opting out of reconstruction and 'going flat'. I have honestly felt marginalized and swept under the rug, as if I am being told that women do not choose the option of 'going flat' and NOT wearing forms. But many do, and many are young, and most do not know how to ask for and get the results they want to see on their bodies. So this article is a great beginning to normalizing one of the many options related to our breast cancer experience.

    I know that this many sound picky and I apologize for it, but the article starts and ends with talk of prothesis, which has its own tab on the site. I understand the tone of the BCO web site is as open and non-threatening as possible, and the hope is to gently present all options.

    the article starts out like this:

    While most women choose to have some type of reconstruction, some women don’t want to have more surgery and don’t want to deal with special bras, magnets, or adhesive patches that hold a prosthesis in place. They choose no reconstruction and don’t wear a breast form most of the time. Many women and doctors call this “going flat” or “living flat.”

    Could it read more like this:

    Some women review all options related to reconstruction and decide to embrace their bodies simply by choosing mastectomy without reconstruction. Others may have additional health concerns that make reconstruction impossible. There are also women who for whatever reason decide to de-construct silicone implantation after a period of introspection. While some women choose to wear prothesis (link to that page), others do not and this is called “going flat” or “living flat.”

    I have additional editing ideas, and i will write them up, but for now, i hope you are willing to consider this one. I feel it is much more inclusive.

    thank you.

    Melly

  • kathindc
    kathindc Member Posts: 2,042
    edited March 2014

    Mods, do take into consideration what MT has written and pass it on to the editorial board.  I like it so much more.  Unless there are women (yes plural) on that board who live flat, no one can really know what we go through making the decision to live against the norm of what society thinks women should look like.  I was lucky.  My surgeon completely understood but there are some who, as in MT's case, give their patients a hard time.

    While I liked what was written I do remember thinking why was reconstruction and prothesis mentioned so prominently when they have their own page.  MT's revision of that paragraph hits wanting to live flat out of the ball park and would do so much in helping those on the fence make a decision.

  • Ariom
    Ariom Member Posts: 6,197
    edited March 2014

    I agree with MT1 and Kathindc, Mods, even as a Uni who does wear a Prosthesis most of the time, I think  MT1's text is Flat specific, as I believe it should be. There is enough information available for women who choose to use prosthetics. 

    I believe there is a swell of acceptance by women to go flat, even to deconstruct for many reasons and not the least being the frequency of horrendous infection and  disappointment in final results. By including this unbiased information, presenting it as a completely acceptable and normal choice on it's own without mention of the "fall back" position of prosthesis is really presenting it as a viable option, as it should be.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Melly - just went to your website - FABULOUS, FABULOUS, FABULOUS, your art & creativity is INSPIRING!

    eta - think there should also be good information on explantation!  Removing those horrible ( often ruptured & we don't even know it) implants.

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