so... I'm opting out...

Options

of recon.  I've finally made a decision.  I'm having a prophy on the rt next Nov.  (The left is already gone.) I *was* going to have expanders placed then but am now going to wait a few yrs (or forever if I can get used to this!).

I need to get some better bras for my prosthesis... I HATE the ones I have but I kept telling myself that it wouldn't be long 'till the expanders were in... well, now things have changed.

This decision was really HAAAARD for me.  I'm youngish and *everyone* who I've told says "that's a long time to live without boobs"... well, maybe. But, there are so many reasons to opt out right now that I just can't sign up for a procedure *I* don't *need*.

Reassurance anyone??

Michele

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Comments

  • bethr
    bethr Member Posts: 259
    edited July 2009

    Hi Michele,

    As far as I'm concerned everyone has to make the decision that's right for them.  Your decision is just that...  'your decision'.  As long as you're happy with it, that's all that should matter.

    Take good care and I wish you the best.

     Beth

  • kim40
    kim40 Member Posts: 904
    edited July 2009

    Hi Michelle

    I'm young too (41) and I have also opted out of recon.  It was a very hard decision for me but now that I have made it, I'm fine with it.  I'm meeting with my BS on the 12th of August to discuss the prophy on the right one as well and I'm hoping that I won't have to wait too long. 

    Everyone's feelings are different. I just think that by not having recon, it gives a sense of freedom and less worry.

  • lisa-e
    lisa-e Member Posts: 819
    edited July 2009

    Michelle,

    I decided against reconstruction, as all of the methods of have major drawbacks as far as I am concerne.  With regards to folks who question your decision, remember it is your body and you have to make decisions for yourself and no one else.  When I was trying to decide about reconstruction, my doctors all said I could have delayed reconstruction if I didn't want immediate reconstruction.  The knowledge that my dscision was not final was a bit comforting.

    I have been boobless for almost a year.  I am comfortable not wearing forms so I only wear them when I get dressed up.   It is nice to be able to throw on a tee-shirt and head out the door.   After your surgery in November, you will be able to play with your appearance and decide how you want to look.  Now, post surgery, I think it is sort of amusing.  

    Good luck with your surgery! 

  • caaclark
    caaclark Member Posts: 936
    edited July 2009

    I am another young (ish) one who has opted out.  I am SOOOOOOO glad that I did!!  I was 40 at the time and I had lots of reasons why it was the right decision for ME.  I have also gotten people saying things like, "Well, someday you will change your mind."  So far (3 years now) I don't seem to be changing my mind and I don't think I ever will.

  • baywatcher
    baywatcher Member Posts: 532
    edited July 2009

    Michelle-

    I am 54. I had my first mx at 49. I didn't have recon but I got a beautiful tattoo over my scar. Of course I wasn't happy to lose my breast but I seemed to adjust pretty well. When I was diagnosed last year, I could have chosen a lumpectomy but since I already had one missing and I didn't want radiation, I chose another mx. I figured that it would be easier the second time but it hasn't been. I am having so much more difficulty having no breasts than one breast. It's crazy because I didn't wear a prosthetic and I was lopsided. I am sure that I look better being even but mentally I don't feel better. I miss my breasts, I feel like I took extreme measures and I am an overall emotional nut case now.

    Recon still doesn't appeal to me but sometimes I wonder if it would have helped me emotionally. I was just so much saner before this last mx. What made you decide to have a prophy on your other breast (if you don't mind me asking)? 

  • marejo
    marejo Member Posts: 1,356
    edited July 2009

    This is a personel decision and only a decision you can make.  No one should give you their opinion on whether you should or shouldn't have reconstruction.  You also should never feel the need to explain your decision to anyone.  It is nobody elses business and it isn't their body.

    What's most important is how you feel and if you are comfortable with you.  What might be right for you one day may not feel right at another time but only you can know that and decide.

    I had my cancer breast removed in 2005 and my other breast prophylactically removed 6 months later in 2006.  I never missed my breasts and never cried over losing them.  I was happy to be alive and happy my cancer didn't spread anywhere else.  I lived like this until 2008 and one day started thinking about having reconstruction.  I couldn't believe I was even contemplating it.  I did my research and knew that if I went ahead with it , DIEP was the only option for me.  Long story short......... I started thinking about this in January 2008 and in June 2008 I went through bilateral DIEP and am very, very pleased.  Until I started thinking about reconstruction and actually went ahead with it was when I first realized how much I missed them.

    So........only YOU can know.  It's very personel BUT whatever you do decide ... well....that is the right decision.....for you.

    Mary Jo

  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited July 2009

    Hi, Michele,

    I had a bilateral mast. in March 2008 and have been boobless since. I had very large, uncomfortable breasts that limited my physical abilities and hurt and made me miserable. On top of that, the buggers tried to kill me! Good riddance!

    After many years of having two albatrosses hanging below my neck, I can once again run, dance, row a boat, do jumping jacks, sleep on my stomach, and wear normal-size clothing. I don't miss them (I'm a youthful 49). I'm not comfortable with any of the current reconstruction options...had radiation, so probably couldn't do implants any time soon; can't see tearing up my body (for a flap recon) just to have boobs. And I'm bloody tired of surgeries for now. Time to have fun! I find the protheses very comfortable...I wear them every day, including during vigorous exercise, and I generally forget I have them on.

    Do whatever you're comfortable with. You can always change your mind...or not. One of the bc volunteers at my hospital did reconstruction 16 years after her mastectomy

  • heymoose
    heymoose Member Posts: 1,119
    edited July 2009

    Hi Michele,

    I had a bilateral mast in May of 2008.  I had cancer inboth breast.  I opted for recon with TE and then implants,and nipple recon.  My breast look great.  I am still tying to get used to them, but would not have changed my decision for anything. 

    Everyone that has responded is correct.  This is your decision, it is a personal decision and no one should tell you what to do and you should not have to explain your decision to anyone.  I wish you the best and go to a good mx bra store.  They are really worth the cost.

    Have a great night and a bright tomorrow.  Sending (((((HUGS and PRAYERS))))) your way.

    Heymoose (Cheryl)

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited July 2009

    Michelle,

    As a woman opting FOR reconstruction I offer my support and reassurance to you in YOUR decision for YOU.  Recon/no recon is a highly personal decision.  It sounds like you did the research, so you are making a decision based on good information.  I applaud your effort to do the research, think long and hard, and come to a definitive desicion. 

    Have you seen a certified mastectomy fitter?  I saw one after the mastectomy.  She spent almost 2 hours with me trying on different styles and sizes of pokected bras and difference prostheses until we found one that looked and felt good.  We even looked at the "stick on" prostheses, but I tend to react badly to tape and adhesive so I opted to avoid that option.  A good fit makes all the difference in the comfort of the bras and prosthesis.  Also, there is a site that gives directions for knitted foobs--"knit-a-tit"--my mother has made several for me--one for my bathing suit, and several in different colors that I wear when the silicone one is too hot or heavy.  They are actually kind of fun, and if you have a bilat you can even be different sizes depending on your mood! 

    http://www.boingboing.net/2005/10/17/knityourown_fake_bre.html

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited July 2009

    Also--ask your surgeon or oncologist for a prescription for prothesis and bras--a certified fitter can then bill your insurance, which is required to cover at least some of the cost.  My insurance company covers either 4 or 6 bras per year, I forget exactly which, and all of the fitter's fee since I had met my deductible & out of pocket for last year.  This year I just made a phone call and ordered more of the bras I like best. 

  • MariaG67370
    MariaG67370 Member Posts: 88
    edited July 2009

    Michele, the decision is yours and you owe nobody an explanation as to why or how you came to that decision.  I was a 40 D, had a bi-lateral June 08. I chose no reconstruction nor do I wear a prosthesis.  This is my decision, I feel very comfortable, and somewhat liberated to be boobless.  It has felt great with all this humidity to go out only in shorts and tank top and not worry about binding bra straps, or irritation from a sweat soaked bra band.   I don't need nor want any more surgeries, especially those that aren't necessary.  It's Time to just move on and have some fun. I am a very active 59 year old and being boobless has not stopped me from doing what I want to do, whether it be playing sports, swimming, going to concerts, traveling or doing my job and yes, even dating.  IMO and this is My opinion, breasts don't make me a woman, they are only window dressing.  It is me that makes me a woman, who I am, what I say, what I do and what I give back to my community shows the world that I am a woman.   I am not about to have unnecessary surgery and risk complications just so that the guy standing next to me in the Super Market or co-workers, or friends and family members can see bumps sticking out from my sweater.  They don't like what they see, too bad, deal with it!  All the best to you!

  • Raye99
    Raye99 Member Posts: 1,350
    edited July 2009

    Hi Michele,

    Another "youngish" woman here who has chosen not to reconstruct either, unless they come up with a method that will not sacrifice my muscles (can't do DIEP or any other microvascular surgery). I am happy with my decision, most of the time. To be honest, there are fleeting moments when I wish I could have reconstruction, but I can't w/o sacrificing who knows what. It is just not worth it to me. I think if I had reconstruction, I would look back and wish that I hadn't, if that makes any sense.

    Through this website and with Barbara's help and her website, I've been able to find bras I love and find very comfortable. Many days I go without my prostheses. My husband loves me how I am and actually encourages me NEVER to reconstruct.

    I am active, healthy and feel great.

    Best to you, Michele,

    Raye

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Hi Michele,

    Another woman in her 50s with no recon.  I have no regrets other than wish I did not have the blasted cancer in the first place.  I agree, Barbara's website has been so much help.

    Much love,

    Melissa

  • carolehalston
    carolehalston Member Posts: 6,887
    edited July 2009

    Michelle, I wholeheartedly support you in your decision which differed from mine.  There are so many personal decisions to be made in this whole bc ordeal, from diagnosis on.  I'm not young in age at 66 yrs. but was enjoying a very active healthy lifestyle, walking 3 mi. a day, doing some weight workouts, playing golf 3 or 4 times a week.  Then whammo.  Mammogram on June 3.  Followups.  Diagnosis on June 25.  Now I'm a week into recovery from bilateral with immediate one-step with implants.  I'll be glad I opted for the recon. if it works out well.  Sorry if it doesn't.   The recon. certainly makes recovery longer and harder. 

    Hindsight is always great.  Now that my path report is back after surgery, I see that I could well have taken a less radical route than bilat.  Tumor so small that the needle biopsy pretty much removed it.  No other malignancy in that breast.  Nothing detected in the "good" breast.  So I might have done well opting for lumpectomy and rads and lived with a slightly deformed small right breast.  Taken Arimidex for 5 years, etc.  But I didn't have the path report going in.

    Recon is always there in the future if you change your mind.  I admire all you ladies who are so strong in your image of self that you don't need breasts.

  • Indomitable1
    Indomitable1 Member Posts: 253
    edited July 2009

    I'm a 44 yo s/p bilat mastectomy 3/27/09 with no recon; drains in (in/out/in) for ~8 weeks. Not eager for additional surgery. Had thought if I was BRCA1/2 (+) I would combine hysterectomy/BSO with DIEP if possible but was BRCA (-) so... will wait and see how I feel in 2010. I complete chemo in Sept and start Rads in Oct. 

    I, too, had large (40H) pendulous breasts (40G prior to kids) which were not much fun and didn't make me feel very sexy. The kids never latched well-had to express. Anyway, you get the pix. And I agree with Celtic_Spirit-and then "the buggers tried to kill me." It is very nice to be free and light (lost 10 lbs with the mastectomies). I wear the camisoles with the soft foobs. Will eventually get the prostheses and bra but just don't feel motivated in the hot Florida summer. Am perfectly OK with my physique-especially now that I'm so well healed. Would go foobless if only I could get rid of my belly!

    So many decisions to be made and each one PERSONAL. I understand that I may feel differently later. I'm OK with that. My goal is to have a LONG later! Here's to all of our Long Laters & forevers!

  • LoriL
    LoriL Member Posts: 185
    edited July 2009

    I agree with the others in that it is such a personal decision and the wonderful ladies around here are supportive which ever way you go.

    I'm 43 and decided to not have any reconstruction at all. I'm very happy with this decision. I LOVE not having to wear a bra if I don't want to!!! :-) I have a few mast bras with a set of forms that I like, but right now with radiation it feels better to go braless. And when I'm done with the rads I can see myself going "flat" a majority of the time. I'm very athletic, lean and was small chested to begin with- so I don't look a whole lot different. :-)  

  • MicheleS
    MicheleS Member Posts: 937
    edited July 2009

    Thanks everyone!! I really appreciate all of the posts.  I'm already small (34A) so there won't be a huge difference being flat.  But, I'm having such body-image issues right now.  I *know* that I just can't do recon now. Too bad recon isn't *easy* or that there are better options. <sigh>

    So what is "Barbara's site" or... who is Barbara?? 

     Thanks again,

    Michele

  • Raye99
    Raye99 Member Posts: 1,350
    edited July 2009

     Michele,

    I was small as well, the same size as you are - 34A and, you are right, there is not much of a difference. I know what you mean about body issues - I think we all have them from time to time. Maybe one day, there will be a way to grow our boobs back!! Now that, my friend, would be wonderful. In the meantime, we have to do what is right for each of us.

    Barbara (screen name Erica) is a lovely woman on these boards who started the website www.breastfree.org.  The site is tremendously helpful, as is Barbara - she's helped so many of us here numerous times.

    Raye

  • angelsabove
    angelsabove Member Posts: 363
    edited August 2009

    Michele,

    I too am young....36 years old and just beginning this journey. I have NOT had reconstruction. I did do a double mastectomy. Lump was in left breast, I am BRCA negative. I just chose a double because I felt they failed me so they had to got. Guess you could say the right one was just guily by association....LOL....... I am in the middle of Chemo and after that I do radiation. I did see a plastic surgeon and he said we would have to wait for the skin to heal after radiation for us to reconstruct. He did tell me something about the muscle in the back.... Like RAYE99 that sorta freaked me out..... I will be making this decision later down the road... RAYE I see you are 3 years out....THAT IS GREAT... You and I seem to have close to the same DX.

    Michelle,

    I wish you luck and I will be seeking the same advice later down this road.... But reconstruction does scare me....

    God Bless U All!!!!

  • starzhere
    starzhere Member Posts: 162
    edited August 2009

    I had a mastectomy, 20 years ago, at the age of 37.  At the time, I had a five year old daughter and just wanted to get the chemo over with and carry on with my life. 

    I've never regretted NOT getting reconstruction.  I think reconstruction is a big committment, in that you don't know how it will turn out and what complications may arise and you have to have the temperment to stick it out.  I don't have that type of personality.   So, for me, not getting reconstruction has been the best choice.  

    ~elaine~

  • lottie
    lottie Member Posts: 205
    edited August 2009

    Hi There - I had a unilateral mastectomy on Monday (right breast) and no reconstruction. I don't think I will elect to do so in the future either. (However, I do want a tattoo when I heal up) I'm 51 and was a 40 D. I'm very comfortable with my decision. Right now what I need is some sort of something to wear when the compression bandage (translation: ugly pink and purple elastic tube top thingy) comes off. I'm looking at post surgical camies and light weight forms but I'm confused. I phoned the local place that does fittings and so forth (Lady Grace) and the woman was not at all helpful. Everything needs to be ordered in advance and she didn't seem at all interested in helping me until  was healed. I guess I'll wing it in the meantime. I expect as I live with one breast, I'll be the kind of person who uses a form only for dress up work-related occassions. I'll have to experiment and see what works and what doesn't.

    Anyway, Michele, as everyone says, this is your decision and your body. Personally I found reconstruction options to be very invasive and painful. I also have spoken with several women who have implants who feel they acted to quickly and would have prefered not to reconstruct. And, I know women who love their reconstructed breasts and are delighted.

    Everyone is different -go with what you feel!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Hi, Michele (we spell our names the same - small world!) -

    I had a lumpectomy but am wishing I'd had a bilat mastectomy in February instead, because although my bs did a fantastic job of reconstructing my breast after he took the 3cm tumor and a lot of breast tissue out, it is now a very different size than the left one - and I was a 36 D.  If I had gotten an bilat, I would not be getting reconstructive surgery, only for the fact that there are so many ways to fill your bra if you want to (prosthesis, etc.) but the option to not have to wear anything is so freeing - no bouncing, jarring or watching them droop!  I am still a woman regardless, and my DH is also supportive of this.  If my situation changes and this beast returns to either breast, they are both coming off.  I am also considering a prophylatic bilat just to ease my own mind.  I'm 46, and very active - work full time in public relations, garden, bike (mountain bike and road ride) and beach, and am so angry that this beast took 6 months of my life already, I don't want a replay of that.

    Goodluck in your decision making process - it is very personal for each woman.   You will make the decision that is right for you.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited August 2009

    Lottie,

    I've also been to Lady Grace, both to the Waltham and Brookline stores. I found the fitter at Brookline more helpful, but I was already a year out from surgery and was able to tell her what I wanted. The local place I like the best is Friends Boutique--it's right at the Dana Farber Cancer Institute in Boston (on the 9th floor, I think). You don't have to be a patient there to use it. I was treated elsewhere. The fitter, Mary, is very kind and patient. I felt really comfortable with her. They have a good selection of forms and bras and will order things for you, too.

    You're still at too early a stage to be fitted with silicone forms (you should wait until you're at least four weeks, but preferably six to eight weeks, out from surgery), but I bought a nice post-surgery camisole at Friends Boutique and wore it with fiberfilled "puffy" forms after my bilateral mastectomy. 

    Raye,

    "I am happy with my decision, most of the time. To be honest, there are fleeting moments when I wish I could have reconstruction, but I can't w/o sacrificing who knows what. It is just not worth it to me. I think if I had reconstruction, I would look back and wish that I hadn't, if that makes any sense."  Your words express so well how I feel. I couldn't have said it better. Living without reconstruction isn't perfect, but for me it's better than the alternatives.

    Thanks for your kind words about me and BreastFree. I've learned so much from you. And your photos on the "Wardrobe pics for boobless days" thread are fabulous! Sometimes, I think people assume that if we decide against reconstruction we must not care about looking pretty. For better or worse, I care a lot about how I look. I actually like that with breast forms I can be exactly the size and shape I want. I was looking at some pre-bc photos yesterday and honestly think I look better in clothes now than I did before. Plus, with the help of physical therapy, I'm standing up straighter. I'm slowly moving toward going form-free on occasion, but I'll only do it if I can feel good about my appearance.

    MicheleS,

    This is such a hard decision. For me, even now, almost three years after surgery, it's comforting to know that I could change my mind and have delayed reconstruction. None of the procedures currently available appeal to me. I don't want to mess with my pectoral muscles or endure the long surgery and scarring to other parts of my body with a flap procedure. But if some new innovative procedure came along, who knows? I might consider it. Since you're young, chances are reconstruction options will be getting better and better. So by opting to do nothing now, you may have the opportunity to get a better result later.

    Meanwhile, I hope you'll enjoy living without reconstruction. One odd thing--not only have I accepted the way my body looks now, I've actually gotten to like it! No saggy boobs, very compact. Weird, maybe, but it's my new normal. Luckily, like Raye, my DH is fine with it and was always against my having reconstruction. 

    Barbara

  • Raye99
    Raye99 Member Posts: 1,350
    edited August 2009

    Barbara - thanks so much for your kinds words. I totally agree with what you are saying. Maybe some day, but right now the options are just not for me.

    Elaine - 20 years ago! That is tremendous and is really inspiring. Thank you for sharing.

    Michelle (Michelle with two L's Wink) - YES! Our diagnoses are almost identical. Yes, the muscle from the back - lat flap (latissmus dorsi flap); this was offered to me as a reconstruction option as well - that and the pedicle TRAM flap - neither of which I want.  I was diagnosed at 39, hang in there honey!!

    Raye

  • angelsabove
    angelsabove Member Posts: 363
    edited August 2009

    Raye....thanks for your response. I am trying to hang in there tough but trying.....

    I think reconstruction will have to be something decided down the road. I believe it is to much to think about during treatment. I think it is awesome that women CHOOSE and do not feel pressure to HAVE to do reconstruction..... Thanks to all of you....and Raye I signed out wrong on earlier post, I was responding to a MICHELLE.....lol my name is DIane.....You do inspire me with you 3 years out......

    GOD BLESS ALL OF YOU

  • MaineCoonKitty
    MaineCoonKitty Member Posts: 125
    edited August 2009

    I am 54 and had a left side mastectomy with no recon.  In fact, I had the right side reduced to a small B size from a DD to provide some symmetry.  Guess what?  After so many years of lugging around those huge hooters, I'm FREE and I LOVE being nearly flat-chested!  Why?

    1.  I can see my feet without bending over.

    2.  I can actually run without being knocked out by flying boobies knocking me in the face.

    3.  I've re-discovered my belly button.

    4.  No more gapping (actually straining) when I wear a button-up blouse.

    5.  Bye bye uncomfortable underwire bras.

    6.  Comfy sports bras  are my new best friends.

    7.  I no longer have to buy oversize t-shirts just to fit over my boobies and then have them hang off of everywhere else.  Do you know how long it's been size I could buy a top that actually fits?

    8.  I can sleep on my stomach for the 1st time since I was a teenager.  My husband is thrilled because I don't snore when I sleep on my tummy!

    9.  Men now look at my eyes when they're talking to me, not my boobs.  And most of them have stopped slobbering.

    10.  No more heat rash under my boobs when I sweat!

    And last but not least......Playboy has finally stopped pestering me to pose for them!  Kiss

    And Hugh Hefner, the old codger, has quit begging me to be his new girlfriend and move into the Playboy mansion.  But I think he was just being kind anyway.....I'm way too old for him.  He likes his girlfriends blonde and younger than his toupees.

    Everyone has to do what's right for them, but for me, unless you're planning to nurse a baby or enter the Miss America contest - boobs are over-rated!  Give me my freedom from those killers!

  • carolehalston
    carolehalston Member Posts: 6,887
    edited August 2009

    Mainecoonkittie, what a terrific post!  You have a great sense of humor and a terrific attitude.  And to think, I've had boob envy all these years!  The largest cup size I've ever worn is Almost B.  Maybe being small-breasted has something to do with my choosing immediate recon along with Bilat.  I'll be happy if it all works out well.  Two weeks out, I'm having some healing issues.  My thinking is that I can have the implants removed if the recon. isn't satisfactory.  It would be easy to go flat-chested.  I've been almost flat-chested for a lot of years.

    Good health to all of us, reconstructed and non-reconstructed.

  • Raye99
    Raye99 Member Posts: 1,350
    edited August 2009

    Oh, Maine Coon Kitty - MEOW (and I mean that in a good way)! Your post is terrific! You made me laugh and reaffirmed my decision! Thank you.

  • kim40
    kim40 Member Posts: 904
    edited August 2009

    MaineCoonKitty

    Love your post!  You have a wonderful sense of humor - it made me laugh and I too felt reaffirmed with my decision. 

  • MaineCoonKitty
    MaineCoonKitty Member Posts: 125
    edited August 2009

    Thanks, ladies.  I am having a ball these days, laughing at the absurity of the whole situation.  My hubby says I love my new and improved chesticles so much that he's afraid I'll go onto the supermarket and flash someone in the produce aisle!

    I just got back from a follow-up visit to my plastic surgeon.  He's such a sweetie and we always laugh and kid about my new "chesticles" - a word I stole to describe the new, smaller boob on the right and the flat left side.  They're not really the same old breasts and they're more like a body builder's chest, so I call them my chesticles.  He said he was really worried that I was so happy about being almost flat-chested that I'd chase away all his breast augmentation customers if they let me sit in his lobby too long.  Wink

    Anyway....I think the way to get through all of this truly life-altering stuff we're all facing is to find the funny side of it.  "Funny" takes away the "scary" every time. 

    Love ya all and I'm proud to be in such courageous company.  You're all brave, amazing women and we're in this fight together.  We might as well make the best of it.

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