Deciding to be flat after reconstruction

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Hello everyone.. my name is vanessa. I am 33 years old. I was at high risk for breast cancer and I had multiple tumors that riddled my breasts. In July of 2012 I had a bi lateral mastectomy with immediate reconstruction. First..let me express how much I did not want reconstruction. I may be young but I did not want further surgeries or revisions. I also had researched the danger of implants. The doctors were determined to make me feel like reconstruction was my only option. I quote. They stated "it will be hard for you to find love. No reconstruction will severely damage you mentally and being so young you will decrease your chances to ever find a partner." I took the leap and had tissue expanders immediately placed. Went through the expansion process and tried to back out a few times. In november I had 800cc implants placed. I was told I would have seintra brand and it was safer because it was a coehisive gel, I picked 2 models in 4 sizes all 700 to 800 range. When I woke my device card was allergen. My PS didnt mention it once. I soon developed neuralgia and other symptoms. I went back to my sugeons ans of course I got the same talk. I asked if it was a possibility that they were making me sick. They told me they are FDA approved. I dont know much but I do know the FDA approves many day to day medications that kill people on a daily basis. I just wanted them out. I was told "why do you want to look like a boy?" It hurt and shocked me. So long story short... I had explant surgery the 27th of March. The burning is gone, I cant wait to get rid of my tubes..but I feel better. I know im a woman. And I guess what I am doing here is to support anyone who feels that she needs someone to talk to. Being flat is OK...:)

Thank you for listening.

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Comments

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

    Hey there, and sorry you had a gang of asses for doctors. I am much older than you (47 at DX), but like you I feel perfectly female and feminine without boobs. If some guy starts any nonsense, like the stuff your docs said, I tell him that I understand how for some men, losing their testicles would make them feel diminished somehow, but that, luckily, I don't have such problems. That usually gets them to change the subject.

    That said, it is obviously quite an adjustment, but I am getting there. For now, I still wear small foobs much of the time and I just take it as it comes.

  • Alynne61
    Alynne61 Member Posts: 11
    edited April 2013

    I'm with you.  I decided against reconstruction and am fine with external prosthetics.  If I had the nerve, I would dispense with those, too.  I would rather be comfortable.  my doctor tried to talk me into reconstruction.  However, I had a mastectomy on the left 23 years ago and went w/o reconstruction.  so, when I had the mastectomy on the right two years ago and said, "no reconstruction", I guess he figured he wouldn't push it.   I did not like the idea of more surgery, discomfort, etc. and, the numbness would have driven me crazy.  I just didn't want to do it and my husband understood.

    There is always some numbness in the underarm and chest area after mastectomy.  Often there is a sensation as if you are wearing a tight bra even if you don't have a bra on.  This is due to the fact that the surgeon had to manipulate the nerves in the area.  It seems to me that this gets better with time.   I'm wondering, Vanessa, if the weight of the implants you had didn't aggravate that and give you the neuralgia.  Glad you are feeling better, now.  

  • mizkitty
    mizkitty Member Posts: 8
    edited April 2013

    Hi everyone..thank you thank you for posting :) well a little update. I had my drains pulled on Tuesday only 5 days post op. My breast surgeon is out on vacation so I had a different surgeon. He was happy I choose no reconstruction and said it's normal for the implants to hurt. So I felt a little relieved naturally. The drain pull was yucky but I lived.. Lol. I was having swelling so I had to go back today. I was seen by yet another surgeon other than my own. She asked my story and told me that implants hurt. Especially for us reconstruction ladies. I told her my experience and she stated she was embarrassed that someone in her office would say such things to me. She also gave me a copy of my op report. It concluded that I did in fact have a leak and had a reaction to the silicone causing reactive giant cells. Since my explant, all the tingling, the severe burning and all the pain is gone. Amazing... And Alynne61..she told me they were way too big for my frame.. The neuralgia cleared and I feel good. I got new light weight prosetics this past week. I think they look fantastic. I go without too.. I really don't mind.

    :) I am actually writing a book. I hope to be there for others.. Thanks again

    :)

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

    Good on you mizkitty!

    I really feel fo you having to go through all that, to end up where you wanted to be all along.

    I have absolutely no concept of where these Doctors are coming from when they push for immediate reconstruction. We are hearing of more and more brave women like you who are having these things removed, when they didn't want them in the first place, and are going forward feeling far more confident and with less pain. How dare this shallow individual tell you that you'll have mental issues, or indeed, have trouble finding love. To say such things at a time when you would be feeling vulnerable is unconscionable.

    Just how sick could you have become with that thing leaking inside you? It doesn't bear thinking about.

    There are plenty of stories here about women finding love after a BMX, we have a saying that it sorts the "wheat from the chaff". LOL

    It is really refreshing to hear your story, I wish you all the very best for your future! Take care!

  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited April 2013

    Good for you Vanessa, I watched your You Tube video that you mentioned on another thread - you are so good to put that up for other women who might be thinking of doing the same. Sorry you had to go through all that to arrive where you wanted to get to in the first place.

    What a load of garbage about not finding love - that doctor must have confused love with something not worth having (loveless lust perhaps?). The people who love you love you, heart, soul and mind, not bits and pieces of your body. Wonder if that doctor trades his wife in for a new model every few years...Tongue Out

    Best wishes for your continued recovery, you have been through a lot. XXX

  • Alynne61
    Alynne61 Member Posts: 11
    edited April 2013

    So glad you had the implants removed.  I know they make implants now that have cohesive gel that will not leak out, even if there is a rupture.  However, I don't want them, cohesive gel or not.  and that is that.  It is my choice.  and I respect the choice of anyone who wants reconstruction.  I know two ladies who had it and are very happy and one lady who, like me chose not to have it ... and she is feeling quite OK about it.

    There is another thread in here where a gal mentions having a "flat-fest" and that gave me such a chuckle.  I can sure understand!

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2013

    I have implants, cohesive gels as all silicone is these days (the leaky liquid ones are a thing of the past) and have had no problems with mine but I applaud you for making the decision that most suited you! Your original surgeon/plastic surgeon sounds like a pompous jerk. Glad you didn't have to see him again. I hope it gets better and better for you.

  • mizkitty
    mizkitty Member Posts: 8
    edited April 2013

    Thank you so much ladies.. I am really happy I'm flat. I did a lot of research and what I found silicone is also in the Shell of saline implants. My pathology report clearly indicates a reaction to the silicone. I did more research yet again in the past two days and found that people who are on dialysis and use silicone tubing have the same problems. :/ I am so happy.. Seriously.. I am very happy to hear when someone gets reconstruction and is happy.. :) people happy makes me happy. Today was my first day back at work and whooooo am I beat! I am just happy that this is over..

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

    Great to hear you are doing fine and back at work mizkitty!

    Take it easy and get some rest. It is easy to do too much when you are feeling good, just have a little "me" time.

    Take care...onward and upward mizkitty!

  • Cathi1
    Cathi1 Member Posts: 3
    edited April 2013

    Hey MizKitty

    GOOD FOR YOU!!! I'm horrified that doctors could actually say what they said to you. I had a bi-lateral mastectomy in December 2005. I have never opted for reconstruction (have a good laugh about my pin-striped chest) and have never worried in the slightest about the flat chest. I've got quite a small frame as it is so no-one even notices. I have just recently had another lump removed from my chest walls and it's come back ER+/HER2+ and after all my scans etc have two spots mets on my liver so doing weekly Taxol for 28 weeks, Herceptin every third week and that will be for a year but so far so good. Last chemo was for six months (Jan-June 06) and also Herceptin for year (2006).....Going tomorrow for #10 / 28. fter that I will do daily radiotherapy for 5 weeks on the chest area. Happy happy days folks xxx

  • MT1
    MT1 Member Posts: 371
    edited April 2013

    I don't know if you have checked out the, 'I look for other flat chested women. A rant.', but I have found great support there.

    I go flat each day. I don't want to wear breast forms and I don't mind 'looking like a boy', though I would have to correct the statement, I don't mind looking like a woman who had to decide against a choice that did not sit well with her and as a result, looks like a woman without breasts. Your doctor bit into an idea that is limiting and distructive to say the least, especially given his job title. We realize this is a money making industry, where doctors, like many of the people in our daily lives do not question their ideas and assumptions. Luckily, it sounds like you are a creative thinker and know how to honor and respect your own thoughts and ideas. WAY TO GO.

  • mizkitty
    mizkitty Member Posts: 8
    edited April 2013

    Hi ladies :) well let me tell you how awesome you all are for supporting me by taking the time to post. Truly it means a lot to me. I saw my breast surgeon last week she said everything looked great and I still have quite a bit of swelling. I have to get checked yearly now for my chest wall... I don't think people realize how it doesn't really just go away. I also don't think the people around me, ie. My family.. Realize what I just went through. Have you all gone through a sensitive period afterwards? I just noticed I don't take crap from anyone and yet I cry easily. My family treated it like I got a dang mole removed or something. Maybe I am being to sensitive? Anyways, I do have prosetics and I do enjoy wearing them with certain clothes just cuz they fit better but I must say I love going flat and free. Cathi1..i will be sending tons of love your way... Love you all... Vanessa

  • MaggiPgh
    MaggiPgh Member Posts: 45
    edited April 2013

    My name is Maggi. I am 58 years old and had bilateral mastectomies on 9/22/08.  I have gone through 5 years of hell trying to deal with the pain of silicone implants.  I have burning pain and tons of pressure, like my chest is in a vice.  Anyway, I finally made the decision to have everything taken off and go flat.  I was just wondering, to anyone who is flat..do you still feel that tightness in your chest?  how long is the recovery time for this surgery?

    I have missed 5 years of my life, with the pain being so bad at night, I can't stand it. then I'd have some good times and not have pain.  Drs. are all telling me what they told Mizkitty...oh you won't recovery emotionally, you are too young. Well, I am ready to do it.  I just need some words of encouragement and maybe a few of you to take with me on this last journey of breast cancer de-construction.  I am scared sometimes and empowered at others.  My family also just says, "Oh have them taken off already..they're just breast!"  So sensitive, aren't they!  I know I need the women of this world who have walked in my shoes.  Is anyone out there?

    MaggiPgh

  • mizkitty
    mizkitty Member Posts: 8
    edited April 2013

    Hi Maggie! First and foremost remember you are a beautiful woman and breasts don't make you less than. I am at week 3 and I feel great. I can only give you my experience. I do get sore and tight but it's still fresh. As for mentally I feel amazing, I don't have the stress and worry any more. I don't have the stinging pain either.. Let us know.. I'll be sending love.. Muah

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

    Hi Maggi,

    Sorry you've been suffering for so many years. There are a couple of Personal Stories on my non-profit website, BreastFree.org, that are by women who have had implants removed. One is Joan's Story and the other Susan's Story. I met Susan here at breastcancer.org. You might find their experiences helpful to read as you decide what to do.

  • redboots
    redboots Member Posts: 18
    edited April 2013

    I just finished my rads today!!!!! 28/28 Woohooooo.... Just wanted to say I'm in anybody's corner for going flat. I had a right mastectomy and honestly I LIKE my flat side. I look at the left boob and think, "Why do I need this thing hanging here?"  Seriously considering having it taken off. My surgeon did not want to remove a healthy breast when I had the mastectomy, and I think he wanted to give me time to give it more thought before I made a rash decision. I respect that, but after several months I can see many advantages to not having breasts. For one thing, no more mammograms. Then no more prosthetics unless I had a wild hair to dress up and have boobs again(it would be optional). Not waiting for the other shoe to drop so to speak waiting for the inevitable recall mammogram and the bad news about something showing up in the "healthy" breast. In reading many, many posts, I hear of dx by pathology of hidden bc after prophylactic removal when nothing showed up on the mammo or MRI. The way I see it, if a man discards me because I have no breasts, well he wasn't worthy of  attention in the first place!  It certainly rules out a lot of crummy men, or as someone on here said, separates the wheat from the chaff......

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

    Hey RedBoots, well done, finishing the rads!

    I too, LIKE my flat, right side, but I am not ready to Do It Again!. Not yet, anyway.

    I agree with all your thoughts and reasons for wanting to do this. I am fascinated by thought of being able to go flat, if I wanted to. It would be great to have that option. The pics I have seen of women going flat are very powerful.

    In my opinion, if a man discards you because you have no breasts, he wasn't worthy, full stop!

    I like to sort the wheat from the chaff!LOL

  • redboots
    redboots Member Posts: 18
    edited April 2013

    Like you, I am not really wanting to dive back into the surgery scene and have those blasted drains again (the worst part). Well yes, I guess it IS kind of fun to do some occasional sorting of wheat from chaff. But after cancer, I am thinking my life could be very short if I have a recurrence, and who has time to waste now? After the months of worry and treatments and surgeries, I want to do some fun things like travel and pursue hobbies I've never taken time to enjoy. If I just happen to meet a worthy guy, that MIGHT be an extra bonus. I've had two unhappy marriages, so no rush to jump into another relationship at this time. Hey, I can be flat-chested and not worry about being rejected for my physical limitations. Opening up a whole new chapter.......

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited April 2013

    Redboots, I pretty much feel the same way. I was not given an option at the time. The surgeons here seem to feel there is no reason to remove a healthy breast. The only time it was ever mentioned was in passing, by the MO when she said that many women who test positive for the BRCA gene opt to have both removed for prevention. At that time all I could think about was how much more difficult it would make the recovery. There are plenty of things that need to get done around here, but I managed to do them one-handed, lol. But then my test came back negative and not one more word was ever said about it.



    I did not have time to really think about or research options or really process what was happening to me. Not whining, just the way it was. Would I have made a different choice? Perhaps. But hindsight is 20-20 as they say. For me personally, I have always felt that the risks of surgery are too great to do anything that is cosmetic, not medically necessary. But now having lived with one breast for several months I almost wish I had been offered the BMX and done it. Having it there means I still have to wear a bra, which is uncomfortable on my scar - I've not been able to find one that doesn't hurt. And it serves no purpose, I'm long since done feeding babies at my age, lol. But would I go through another surgery to have it off? Tough, tough choice. I think probably not. But if they found something suspicious in it? I'd schedule that surgery in a heartbeat and be glad to be rid of it.

  • redboots
    redboots Member Posts: 18
    edited April 2013

    Jennie93, we are sympatico on the subject. When I had the unilateral mastectomy on the right, I was so blindsided by the whole BC thing, I just couldn't fully focus on taking the other side off. Not that it would have done any good to protest keeping the left one. It is hard to fight when you are down on a gurney and being wheeled into the OR for the second time in a week. Male doctors seem to think women must be crazy to consider going flat, maybe they are convinced that we will not be attractive any longer to the opposite sex. I am sooooo done with all of that thinking. I am 65 and breast fed three children, so I used those boobs as they were intended. I am living separately from my second husband of 37 years and really don't care if I ever have another man in my life. Maybe that will change, but I doubt it. I'm having too much fun on my own, not catering to somebody else all the time. My "ex" says I am selfish, and the BC is a punishment. OMG. 

    I don't wear a bra except when I absolutely have to, and then I just sewed a pouch with micro beads into the empty cup. That seems to work okay because I was never one to wear tight, revealing, or low-cut things. I'm a very practical person and do a lot of gardening and heavy yard work so I wear lots of flannel shirts and sweatshirts that cover everything up. Not that I don't know how to be a girly-girl. I do and I have in the past been fashionable and feminine. Now that I'm older I don't even buy spike heels anymore like in the old days. I would rather be comfy. Besides, I have a bunion.....  :)  

    I wonder if Medicare would cover a prophilactic mastectomy now?  Jennie93, I agree I would have that other boob off in a heartbeat if they found so much as a smidgen of DCIS. I plan to ask for an MRI with my next mammogram to see if there is ANYTHING in there. But, as we know, tests only go so far and don't show everything.

  • mkgcpa
    mkgcpa Member Posts: 1
    edited April 2013

    It's not the flat, sort of sunken, chest that I mind as much as the expanded midriff.  I sometimes think I have the profile of a pregnant 40 year old man.  I've always loved fashion and dressed relatively well but now ????  I do not like to wear prostheses.  So what does anyone suggest?  Woven blouses,  jackets,  ?????

  • redboots
    redboots Member Posts: 18
    edited April 2013

    I hate to wear a bra now that I'm recovering from burns and skin irritation from my recent radiation, so I wear a cami as a substitute when I go out in public, and I've found that patterned clothing seems to be good at camoflaging the flat chest. Also I wear a lot of button up shirts partially unbuttoned over the cami. Jewelry and scarves tend to attract the eye, so somebody looking at you head on would not notice a flat chest as much. Most people don't seem to really pay that much attention anyway. MKGCPA, I have a midriff pooch too (mine is menopause fat) and I hate the fact that it seems more apparent than ever now that I can see it when looking down. I'm trying to lose some weight, but it's not coming off very fast. I was pretty inactive for a few months with all the medical junk I've been going through. I've always worn jackets because of my pear shape, so I continue to do that.  I hope we get some posts on this forum with original fashion ideas.  Ladies?????

  • JAN69
    JAN69 Member Posts: 947
    edited April 2013

    Ladies, this is a topic I can relate to.  I was diagnosed in January 2011 and had a unilateral mastectomy.  I hated having that one healthy boob just hanging there or having to wear a prosthesis.  I wished all along I had put up a fuss to get healthy breast removed at same time.  Finally I had 2nd mastectomy in October 2012 and I love being flat.  And yes, Redboots, Medicare does cover it. 

    I'm retired and we live in the mountains, so our life style is very casual.  I usually just wear Tshirts, some printed, some with gathers or tucks in the front.  I have a large collection of Target tank tops that I wear under button up shirts.  For a dressier occasion I might wear a bra and foobs. 

    I feel free and liberated and happy with my decision.

    Best wishes for a long healthy future to all of you, Jan

  • redboots
    redboots Member Posts: 18
    edited April 2013

    Thank you JAN69 for the Medicare info. I was DCIS Stage 0 though, so unless the cancer is invasive, would they be likely to let me just take off the other boob "just in case"? I'm going to pursue it.  I'm also retired and live a very casual lifestyle, so mostly wear shirts and jeans. Very seldom dress up for anything. Dressing up for me would be putting on a new pair of jeans.... :)

  • MaggiPgh
    MaggiPgh Member Posts: 45
    edited April 2013

    Hi Redboots,

    thanks so much for your comments.  I am going to the surgeon today to schedule my deconstruction surgery.  I have had implants for almost 5 years and cannot take the pain and pressure anymore. I am scared about going through this surgery and having to be flat-chested, but am ready, so ready to get these things out of me.  I have lots of questions, but erica's breast free website cleared up a lot.  I am just now looking for support to go through with this. Thanks for listening, and i hope i hear from some of you breast free women over the next few weeks.

  • redboots
    redboots Member Posts: 18
    edited April 2013

    Maggi, I admire your courage and determination.  I will be thinking of you in the weeks ahead and will support you emotionally on this forum in any way I possibly can. Feel free to rant and cry if you need to. After five years of misery, it will be such a relief for you to get rid of your implants! This website is just full of comments from women who hate their implants and have so many issues.   Good luck, and keep us posted here on the forum.  

  • BikerLee
    BikerLee Member Posts: 355
    edited April 2013

    i'm quite happy flat - i do not use prosthetics... i just rock the flat look.  i feel a wee bit self conscious some times... but not often.  i love not having boobs in the way...  i'm an athlete and i love having no bounce to deal with! 

    now - i do miss my nipples tho... those were ... delightfully fun and wonderful.  sigh...

    i'm so sorry you had a bunch of jerks for docs. how awful! that you've had to go through all this - and for WHAT????  jerks.  momine said it well, she did.

    i was super lucky - i had no troubles with my decision to go flat - no problem with my choice to do the double - no persuasive bs to try talking me into implants... none of that.  they asked me a few questions that were aimed at getting a feel for my certainty, but i never waivered and felt confident that i did not want reconstruction.  but you know what? that experience should be the norm - not "super lucky"....

    it's soooo good you posted this!  and i'm so glad you are feeling better!

  • MaggiPgh
    MaggiPgh Member Posts: 45
    edited April 2013

    I am very scared of having even more pain after the surgery. who knows?  I already have so much nerve damage, the surgery could do more damage. but, I am pressing on with my decision to go flat,don't think I will be able to jsut go flat though, will probably use foobs some of the time, especially when getting dressed up. Oh, now i need to get clothes that flatter this look.  I am just so glad this is almost over.  I hope sharing my story will help other women to avoid such a mess. Surgeons are egomaniacs and think they know everything.  I cannot wait to be rid of them!!  Please, anyone, feel free to respond, it helps me so much.  No one else really understands what I am doing.  Even my sweet husband said, "Just have those things off and be done with it"

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

    Oh Maggie, I feel for you, but I admire you so much for what you are doing.

    It takes a lot of guts to go through this, but you'll feel so much better when it is done. You'll find many women here who absolutely understand why you are doing this, and they'll be here to support you if, and when you need them.

    I love your husband's attitude. I didn't reconstruct, and even though it is early days for me, I have not regretted it for a moment. On seeing my Umx, my husband said "You don't need two boobs to be gorgeous!" gotta love him!

    I wish you all the very best for a speedy recovery from an uneventful surgery, and a feeling of freedom that you can choose to embrace, or to dress up with "foobs".....Your choice!

  • ninamat
    ninamat Member Posts: 2
    edited May 2013

    Hi Maggi....I too admire your courage.  I have had my reconstruction done twice (since April 2007) and I hate hate hate them.  I have pain, pressure, itching, and can't sleep on my side.  I would have had them out last summer but I developed splenic lymphoma and spent two weeks in the hospital then two months at home recovering from a gawdawful surgery.  My plastic surgeon said she would take them out and if I wanted to she could do "fat grafting" to keep me from being concave.  I would in essence get a tummy tuck which is paid for because it is "grafting not "lipo" according to insurance terminology.

    Can you tell me if you are "concave" or just flat now that you have had them removed?  Did they remove the skin that was stretched due to the expanders?  I would love to sleep on my side again without pain.  If I do sleep on it too much - it aches for days.  I am a size 16 so I had large implants put in.  Even so, I still wear a small insert to balance my chest with the rest of my body for symmetry.  I won't mind using a prosthetic when I want to "dress up"  but I am fine with flat if it looks flat not sunken.  Any advice is so appreciated!  Thank you! 

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