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Things We Aren’t Supposed to Say About Mastectomies, Reconstruction & Breasts

June 2nd marked three years since my bilateral mastectomy. The day came and went with no one really remembering other than me. Or at least I don’t think anyone else remembered. No one said anything. As the day progressed this year, I finally mentioned to dear hubby that it had now been three years and I could tell the fact I had brought it up made him uneasy.

I shared it because not sharing it would have made me feel even more uneasy. It’s not like I’ll ever forget that day. I know he has not and will not ever forget either (though he doesn’t remember the exact date) for reasons of his own. I can’t forget because the mirror doesn’t allow for that. There are a whole host of reasons that don’t allow for either of us to forget. This post isn’t about those things. At some point I will write about some of those personal things too, but not yet.

No, this post is about making a simple statement that I think many of us who’ve had mastectomies, and to some extent maybe even those who’ve had disfiguring lumpectomies, hesitate to make. It’s this statement:

I miss my breasts.

Sometimes it seems I’m not supposed to say this. I’m not even supposed to think it. I am supposed to have put all that behind me. I am supposed to be grateful. For the most part, I have and I am. There is even a certain amount of guilt involved in saying or thinking such a thing. After all, I’m alive. Shouldn’t this be enough? Well, yes, but…

There is a lot of talk these days about mastectomies, prophylactic and otherwise. Some even say there are too many being done. In a way, having a mastectomy of any sort has almost become some weird kind of normal.

It’s not.

Along with all the discussion about mastectomies, there is lot of reconstruction talk as well. Sometimes this process is made to sound too easy and almost normal-like as well.

Again, it’s not.

Reconstructed breasts may or may not turn out ‘lovely’, but regardless of the outcome, they are still exactly that – reconstructed. And if a woman chooses not to do reconstruction for whatever reason, she might be looked upon with skepticism by some and perhaps even made to feel she must explain her reasons for making the ‘radical’ choice she made. Again, there’s guilt inserted into this picture. Why is this?

Two other things that really struck me as I was thinking about this post were:

First of all, after a breast cancer diagnosis things often get rolling really fast and there isn’t time allowed or time taken to grieve for sacrificed body parts. We do perhaps need and deserve time to grieve for things we lose to illness; things like hair, breasts, ovaries or whatever it might be. It’s important to acknowledge the losses and be allowed to grieve a bit. A partner might need to grieve as well.

Secondly, even though this very blog is about breast cancer and loss and undoubtedly I have used the word breasts a gazillion times, I don’t think I’ve ever come right out and said, I miss my breasts.

This is a strange absurdity for a breast cancer and loss blog, don’t you agree?

For some reason there seems to be a certain amount of guilt involved when a breast cancer patient, says she misses her breasts. (And think for a minute how our partners might perhaps be unfairly scrutinized/criticized if they were to openly admit they missed their loved one’s breasts). I do miss mine. They were nothing special as breasts go, but they were mine. I don’t think of my reconstructed ones as mine. They are still foreigners in my body. This, too, is another interesting self-revelation.

So yes, I miss the breasts I gave up to this disease and I always will. There, I finally said it! I should not have to feel guilty for thinking or saying such a thing.

Neither should you.

If you have had a mastectomy with or without reconstruction, do you miss your breasts?

Why do you think we sometimes feel guilty about admitting such a thing?

If your partner has had a mastectomy, do you ever admit your true feelings about it to her or to anyone?

 

209 thoughts on “Things We Aren’t Supposed to Say About Mastectomies, Reconstruction & Breasts

  1. Thank you for sharing your experience and thoughts. I think we have a very important duty to put this kind of information out there. Over two years ago I was diagnosed with breast cancer and had a bilateral mastectomy followed by immediate reconstruction (under the pec silicone implants). I have an excellent prognosis, and a visually successful reconstruction. Because of this I have had a very hard time coming to terms with the profound grief I continue to feel about losing MY breasts and the extreme ambivalence I feel toward my reconstruction. In the epidemic of breast cancer the process of mastectomy followed by reconstruction has become normalized to an extent. It is a horror that should not be sanitized. Reconstruction can create a remarkable illusion. It can also cause chronic pain and be a sacrifice of comfort and muscle function for appearance. Despite the lengthy consent forms, little information regarding the downside of reconstruction is presented prior to making the decision. Processing cancer and reconstruction options simultaneously is a daunting task. I, for one, wasn’t really able to. I think I said something like, “Show me your after pictures and let’s go”. I am grateful to be alive. I also have disabling “breast” pain and everything I do on a daily basis that involves my pec muscle is either painful, impossible or disturbingly different. Approximately half the women who choose reconstruction report chronic pain. Would I have chosen reconstruction if I had known this? I don’t know. That we will choose reconstruction has become almost an expectation. I do know I admire the brave women who don’t and those who creatively tattoo their surgically flattened chests.

    1. Greta, Thank you so much for adding your insights. As you can tell by the number of comments, this post really struck a chord for many. There are so many issues involved here… You certainly hit on some important ones in your comment. Again, thank you.

    2. Greta- I appreciate completely what you wrote about processing a cancer diagnosis AND choices about reconstruction. It’s too much. I just wish more women could be counseled in this beforehand. I am one week post mastectomy with tissue expander in place. Ugh. Thanks for your honesty. D

  2. Thank you so much for sharing. I had stage 0 DCIS diagnosis in December 2011 with lumpectomy in Jan 2012. No clear margins,so on to bi-mastectomy in March 2012 with immediate implants. Everything happened so quickly and everything took so long at the same time. My husband has been super throughout the entire process, but I really do miss my breasts. I am definitely very aware durinig intimate moments–have never been completed naked with my husband since. I am grateful that I didn’t need any additional treatment, but I find I am now questioning the decision. Was I pushed by the drs? was it really necessary? seems I keep hearing about new studies that question the number of unnecessary mastectomies? I can’t say this out loud because everyone would think I’m nuts. Maybe a little more time needs to pass.

    1. Cheryle, I understand completely and as you can probably tell by all the other comments, many others do as well. Many times things do snowball and big decisions are made quickly upon diagnosis. I think questioning your decisions is normal, but perhaps not productive at this point. What’s done is done. You made the best decisions you could at the time based on knowledge you had, so don’t beat yourself up. I believe it is productive to acknowledge the losses a diagnosis brings and missing your breasts is completely normal because having them removed is a huge loss. I miss mine too and it took me three years to get up the guts to say that publicly on this blog. Ironic isn’t it? And yes, give yourself time. Be patient. Thanks so much for sharing. You’re not alone. And you’re not nuts either!

  3. I had a bilateral mastectomy in August 2012, and opted to forgo reconstruction. Diagnosis of widespread (hence no lumpectomy) DCIS was only in the left breast, but I preferred to remove both, and the pathology report indicated that was a good choice. Before the surgery, my oncologist expressed concern that I was in denial, wasn’t “dealing with” the upcoming loss. I explained to her that I had had a complete hysterectomy 20 years earlier and, having lost the chance to have the child I’d always wanted, I suffered a great deal emotionally through that; but that truthfully, having breasts that would never nurse a child was almost an emotional insult. I had no great attachment to them. What about intimacy, the sexual aspect? Sex may be fun, but that drive exists to ensure procreation takes place, and again, that was a moot point for me. I couldn’t ask for a more supportive partner than my husband, although I know HE misses them. Whenever reconstruction has come up, he’s the one who’s started the conversation. I believe he understands my rationale: I’ve had my gall bladder out, then the hysterectomy, then one hip replacement, then the mastectomy, and then a second hip replacement… my body has endured quite a bit, and reconstruction would require three more surgeries (with stretchers). I just don’t feel I’m up to it. I may – MAY – have scar-revision surgery at some point to clean up the mess and loose skin a bit. (One of my incisions didn’t drain right and ruptured, and they said it was best to let it heal “from the inside out” instead of stitching it back up – which meant four months of DAILY trips to the doctor for wound cleaning and packing, and that side is still pretty lumpy.)

    I understand why you miss yours, just wanted to share why I don’t miss mine – much!

    And Cheryle, I agree with Nancy: You cannot second-guess the decisions you made then. “Onward, by all means” – Atticus M. Finch (Google “Following Atticus” and check out his Facebook page to learn more about this remarkable little dog)

    1. Toni, Its sounds like you’ve been through a lot. I completely understand about your surgery fatigue… Yes, I do miss mine. Thanks so much for sharing about something so personal.

  4. Thanks for this article. You helped me realize something. I new I was feeling really down this Christmas but not sure why. Well, two years ago at this time I was focused on getting through the Mastectomy, then last year all my energy was focused on getting through my hysterectomy and losing my ovaries. This year no surgery, thank goodness, but this year I don’t have anything to distract me. I know that sounds odd but I am really feeling the emotions of all I have been through the last couple year.

    1. Beth, It is a lot to process and even when it’s all said and done, it’s not really ever done. So I don’t think your comment sounds odd at all. The emotions are still close to the surface… be gentle with yourself. Thanks for reading and commenting.

  5. I had a bilateral mastectomies 3 years ago this coming April. Everyone tells me how lucky I was that the invasive part was small and I did not require any more treatment. Guess I don’t feel so lucky, even though I really do know that I am lucky that I did not have to go through Chemo and my prognosis is very good. I had delayed reconstruction because my surgeon was expecting me to need chemo and possible radiation. I did not need them. I hate my reconstructed breasts. I can’t even tell you exactly why I do. They just don’t look or feel right to me. I don’t know if I should see anther plastic surgeon or if this is just the way all reconstructed breasts look. They are larger than I requested and I am very depressed about how I feel about my body. My husband is great and says it looks good, but what else could he say. Just don’t know what to do. I guess I should just feel lucky, suck it up and live with them.

    1. Kim, Of course you don’t feel lucky. There’s nothing “lucky” about getting a cancer diagnosis and having a bilateral mastectomy. It’s all a huge deal. Depression after a diagnosis and even when treatment ends, is very common. Please talk to someone about how you’re feeling. Don’t suffer in silence. You’ll probably never feel great about your reconstructed breasts. I certainly don’t feel that way about mine. I know exactly what you mean…But again, talk with someone and your husband too, about how you’re truly feeling about things. And by all means speak with your plastic surgeon about your dissatisfaction with your results. Maybe there are options to improve things. My best to you. Thank you for sharing.

    2. Kim it’s totally normal to feel grief, depression and loss when you have cancer and lose your breasts. Just remember that these other people, including your husband, (1) have no idea what it feels like, (2) are probably upset by the pain you feel, and (3) are trying to help, but have no idea what to say that could be helpful. You don’t have to listen to their lame advice, as well meaning as they may be! As my PS told me repeatedly during my reconstruction, it’s not a breast (I had a uni), and the best they can do is make it shaped and sloped like a breast so it looks like a breast with your clothes on. After a while, I realized that the function of my reconstructed breast is to make me forget that I don’t have a left breast when my clothes are on. I look great in my clothes, my balance is restored, and except for the numbness, which will diminish, I feel pretty normal WHEN MY CLOTHES ARE ON. This is the standard by which you should be judging your reconstructed breasts. If they do not feel and look normal to you with your clothes on, except for numbness, you need to consult another, better plastic surgeon, and tell him/her exactly what YOU want. There are some really great talented surgeons who do a lot of work improving what other less talented surgeons have done.

    3. Kim, I am right there with you. Last Nov. mammogram revealed four spots of cancer among my two breasts. Four! Double mast and expanders quickly followed. Picked my plastic surgeon from good referrals and his gallery of “after” pics, which were impressive. I never figured my reconstruction results would not make his galley. My reconstructed breasts look awful. I don’t know whether to continue my treatment with him (fat grafting, nipple creation, tattoos) or trust another plastic surgeon. Trust is hard to come by nowadays but there is anger and sadness to spare. Other plastic surgeons won’t promise anything- I guess I am already presenting as a dissatisfied patient- why would they want to take on that? And I am tired and stressed from surgeries. Hair still falling out even tho no chemo and have stopped tamoxifen. In a world that’s crazy for hair and breasts, I am at a loss. Now if another person tells me I’m lucky……

  6. Nancy,
    After having yet another dose of “I miss my breasts” last night, I began to look up online to see if other women felt the same as me, so thank you for this blog.

    I was diagnosed with triple negative Stage 2A Infiltrating Ductal Carcinoma. After a lumpectomy, 6 rounds of chemo, and 36 radiation treatments, I was thankful to be alive. Eight years later and cancer free, my insurance finally would pay for the breat cancer gene test. I had to know for the sake of my daughter so took the test – twice, once on my insurance, and once at my own expense and my husbands insistence that the first test could have been wrong. But it wasn’t – I am a BRCA1 gene carrier. Having to tell my children whom I had no idea of the gravity with which this would affect them as well, was harder than any surgery and pain I had to endure.

    I had already done sone research while waiting for the results, and had a good idea of what was coming next. After consulting a genetic counselor, I decided my best option of preventing this cancer from returning was to have the bilateral mastectomies with reconstruction and full abdominal hysterectomy. I almost backed out at least a dozen times, and had nightly crying fits over the thought of losing my breast. But they were taken from me – and that’s exactly how I still feel today, almost two years later and headed toward a revision.

    Like you said everyone tells you how lucky you are to be alive, or how good the “girls” look, or that it’s only a small part of you.

    WRONG!

    My breasts were a huge part if who I was. Sex for me has not, and can never can be the same for me again without them. My husband claims they are fine, and now even goes as far as to say he was never a “boob” man, which is a lie. He has paid zero attention to my body in general since the surgeries, and who could blame him? There are scars on my breasts, scars on my back from the latissimus muscle being removed, and a scar from my hysterectomy. I’ve tried to tell him I can still feel pressure sensation and him holding my breasts still is important to me, so he grabs and holds them, but it is ever so clear that he has no interest in them at all.

    Imagine my horror when the day I came home ftom having nipples made, and I walked in to show him how they looked and found him staring at porn on his work computer, not even looking away or noticing I was there until I spoke.

    No one really understands those of us that have been through this, and never will. We tried, or I should say I tried, both individual and couples therapy. My husband spent most of our sessions getting the counselor off task and talking about other subjects. I am list now alone in my marriage. I fear bringing up any subject related to my feelings because he doesn’t want to have to deal with it. He won’t cone out and say how he really feels, just says he’s fine.

    It’s no surprise to me that I can’t find any sites with men honestly discussing how the loss of their partners breasts has affected them. Actually, it’s a shame they haven’t. I certainly would appreciate the honesty from someone, since I can’t get it from my husband.

    1. Susan, Gosh, I’m so sorry for all your anguish. All I can say is that I understand. I hope you don’t give up on that counseling. I agree there’s a need to address the needs of partners affected by breast cancer too. I’m trying to delve into this area more, but it’s a difficult area to address in such a public forum, and yet I feel there is a great need. Please check out my most recent post about the research survey. Filling this out might at least make you feel better and it just might bring more awareness to this very important topic. Thank you for sharing about such personal matters. My best to you.

    2. I’m not suprised that your husband won’t talk to you about your breast ,You are fighting a battle against cancer . the last thing he wants to do is hurt you ( feelings or confidence )
      my wife is a cancer survivor also.
      so I will be as frank and maybe a bit crude and I may be speaking from my own experiance. but
      even if he wasn’t a breast man to begin with
      it was probably part of his ” normal ” sexual play. by that I mean part of how he helped get you in the mood. I know it was for me and the lack of full sensation makes cupping her breast less “enjoyable” in that it’s not serving the any useful purpose ” exciting you”

      I can promise you he’s having a hard time adjusting to the new sexual reality that HE is in , I know I sound selfish but I’m sure he still loves you and being married he’s promised his love to YOU for the rest of his life.
      You have to allow that he has lost something too …. Ask yourself a simple question , If he was watching porn and i assume excited , how did you make him feel about watching it ? did you drop to your knees and ” help him out “? or was there shame involved “why are you watching that when you can have me ?” a scornful look and abandoned the room .
      You aren’t the same woman he married. it may take you getting more involved in HIS arousal than before . if you love him and want to stay married to him . “help him out”
      I’ve been married to my wife for over 10 years and this has been a major adjustment for me too. and I would NEVER tell her I don’t find her as attractive as the day we got married , because I LOVE her . You think that your breast is the only reason he doesn’t want to have sex with you .
      YOU’RE WRONG..
      we had reconstructive surgery etc. and its NOT the same. her nipples used to be VERY sensitive and I am still trying to find things that I can do for foreplay that works as well .
      MY real advise is
      If something gets you hot TELL HIM but do it in the bedroom either during or slightly after sex. he’ll add it to his routine . lets face it we men like sex. and love the women we CHOOSE to be married too.
      I realize my thoughts are a bit random but , I think I have said what I need to say .

      I wish I could get someone to tell my wife the same things I’ve told you .

      1. Maxwell,

        Wow. Thanks for showing most of us women what we probably expected to hear, and for all the shouting. You my entire conversation and broke it down to one thing – having sex. I’m talking about attractiveness, and being pretty to him again.

        Way to miss the point entirely. And fyi, our sex life always has been great. But you probably would not understand that sex, is not everything.

        And shame on you for (yes, I’m shouting now…) NOT telling your wife, which is exactly what you told me to do with my husband, and what I have, we have, always done.

        Believe it or not, every aspect of my life and situation will not be shared on this board.

        1. I didn’t mean to offend , just relate my personal experience. And thanks for doing what most women do to men , accuse me and by extension most men of thinking of just sex.
          I think you did miss understand the observations in my own relationship.
          I love my wife and she understands and loves me… I don’t need you to.
          to me she has always been attractive and you were worried that your husband didn’t find you as attractive any longer I assume you were projecting your own feeling on him
          And he like I never saw you as less than beautiful.
          it was just a man’s point of view and since there are not a lot on this subjext it might help others.
          To know that the men that have feelings and emotions too. Or is it wrong of me because I am a man to even have a voice on this subject.

    3. Susan I’m so sorry for the double whammy you are dealing with; first the huge horrible wake up call about BRCA1 and then, finding out that your husband is having problems dealing with it. Nothing is worse than when two bad things hit you at once. It’s one of those situations where you need to prioritize where you’re spending your emotional energy. You’re the adult in the room, so put the oxygen mask on yourself first, take care of yourself, then tend to your children. You’ve made the tough choices and gone through the ordeal of saving your life for yourself and your family. You did the right thing. Your husband has put up a brick wall, so you need to quit slamming into it trying to find a way in. You can’t know what’s going on in his head until he wants you to know. BC and the huge stress we endure as couples changes all of our marriages, but hopefully you will be able to find the way forward together.

      1. We need to remember that although we physically endure BC, our husbands do so emotionally. We don’t hear much of the men’s perspectives for which I thank Maxwell.

        1. Anita, You are so right. I have been meaning to write a post about our partners and their loss in all this, but I haven’t done so yet. I think it’s important to talk about this too. Thank you for reading and commenting.

  7. I had a tram flap free with reconstruction. Surgery was 17 and a half hours and MANY complications afterward which led to four more surgeries. That was in 2011. I hate my breasts. Between the necrosis that is slowly taking over and pain, I think I made the wrong decision and should have done implants. It was a long road of recovery. My question is after a tram flap free procedure is it possible to have my breasts reconstructed again? I have bulges on the side of breasts under my arms that make me look like a football player and I have become very sensitive about it. My breasts appear to be oblong instead of round. I am thankful that I had a choice but frustrated with the outcome.

    1. Terry, I’m sorry about the complications you are dealing with. No wonder you’re having doubts. I don’t know the answer to your question as everyone’s situation is different. I would say that you definitely are entitled to serious conversations with your surgeon about how to make things better and go from there. Good luck.

    2. I also had the tram flap procedure done and so far if I had to choose between wearing those hot uncomfortable prosthesis and the breast I have now I’d choose the ones I have now. I had to have emergency surgery to save the right one as it began to turn black and die 8 days after the surgery. I was in surgery 10 hours, not a long as you bless your heart. Woke up in ICU with a racing heart that no one could figure out the cause. Two blood transfusions during the surgery, a 12 day stay in the hospital which resulted in my getting pneumonia the day after my release and another five so far surgeries as my right breast is at least a cup size or two smaller than the left. I don’t know if you can go back and get implants but if you want them it’s worth it to find out. I didn’t want implants as they need to be removed and replaced every 10 to 15 years and who the heck wants to have their chest cut open again after cancer?

  8. As the husband of a woman who had a double mastectomy without reconstruction, I would like to share a few things from this side. Her breasts not being there anymore is a little thing to me, I love her new body. What caused hang ups was my fear that touching or looking at her scars would make HER feel uncomfortable. I love her scars, and now after a couple years, kissing, touching, etc in that area is finally without hang ups. Ladies, let him know that you want him to touch /kiss /look /fondle. Otherwise he might be afraid of hurting you or embarrassing you. Just my take 🙂

    1. Kent, I think your comment is something very special. I’m really glad you shared your thoughts as I often wonder if any men are reading. I think it’s understandable that you were fearful or worried about making her uncomfortable. Sometimes we do hesitate out of uncertainty or fear of upsetting our partner. This goes both ways. Communication is so important, but it’s hard too. Your advice is very good. Thank you very much for sharing your take. Your wife is very lucky.

      1. It sounds like this man loves his wife deeply. He might have the capacity to admire her ability to rebound after adversity. Scars are a way of admitting there was once a problem and now she is healed. Although the battle was difficult he admires her battle wounds. He sounds like he loves the woman inside as well as outside. Maybe it turns him on that this woman loves herself and her man enough to push pass the loss and finds love at the deepest place even if at times there is darkness and fear and loss. There may be release and love and passion that transcends all medical difficulties. You might be right that he is is not completely honest….who likes scars……but some women tattoo them and they become beautiful pieces of artwork. I hope if you love a woman with breast cancer and she has had a mastectomy that you will look deeper…. Feel deeper….. And help her to acknowledge the loss….. But what you think is honesty….. Maybe brutally honest…. What this man said was compassionate and considerate and loving…. I do not want your comment to take away the possibility of people loving one another’s scars because the chance to heal and still find beauty even if in others eyes may not be perfection. I choose that beauty is in the eye of the beholder. I pray for peace for you and your loved one. I also know that anger and loss is welcome here too.

        1. Diana, Thank you for your comment, Diana. I removed Bob’s comments. I hardly ever do that, but I don’t tolerate name calling. Bob, and anyone else, is free to share their opinion here – I want that, but name calling is not okay. Thanks again, Diana.

        1. Bob, I can’t approve your two comments where you use name calling. If you’d like to say you don’t believe what someone says or whatever, that is fine, but I can’t accept comments with name calling in them. Those two will be deleted. Thank you for understanding.

  9. I love you post! I was diagnosed at age 38 with Invasive ducktail carsonoma grade 2a. estrogen receptor positive and her2 negative. I immediately knew that I would opt for a double mastectomy with reconstruction. My thought is that if I was going to have to go thru this I was going to get the big boobs I have always wanted. I have a amazing plastic surgeon and they look great. But honestly there are things I miss about my boobs, like fealing sensation and I agree they don’t feel like myn. They are a foreign object in my body. I have shown any women that I know that wanted to see them and I never would have done that before. Honestly I am happy with the outcome but I would happily give them up if I could erase the last 10 months.

    1. Amanda, I’m happy you are pleased with your reconstruction outcome and yes if we could erase things, that’d be nice. I’d be doing a lot of erasing! Thanks for reading and sharing. I wish you well.

  10. I miss my 36C cup breasts often. I’ve thought about them and cried for them. I’ve brought it up in conversation and admitted it out loud that yes I miss them. I gave nourishment to my daughter when she was a baby with those breasts. They helped me to feel out my clothing I wore. I enjoyed having them touched when I was intimate with a man. I hate that I got cancer and that my body had to be mutilated because of it with no guarantee that this stupid cancer won’t come back. I went with tissue transfer (Tram flap) procedure to give me the illusion of breasts. They don’t have real nipples, they won’t give milk, and they don’t have the sensation in them my died and gone to heaven breasts had. To all you women out there who’ve had breast cancer, who have it now and who will find out soon that you have it. I love you and send you a big hug for what you went through, are going through, or will go through someday.

  11. What I find so lovely here, Nancy, is that you take the time to respond to each and every woman and with such compassion and grace. I don’t know if I can say anything that would add an ounce more to this except that in my case, my military doctor, one who doesn’t make a dime more if he does 2 or 20 mastectomies in a month, had nothing to lose by telling me women grossly underestimate the loss of their breasts. This was 5 1/2 years ago now, and while I didn’t have a choice for removing my right breast, he convinced me I really didn’t need to remove the left breast and of course I could change my mind about that in the future. I’m so very glad I took his advice and yes, even after countless MRIs and even a biopsy last year, I wouldn’t change my decision. I never fully understood the sexual ramifications of losing a breast, yes, even just one. And I would venture to guess my husband never realized that 5 1/2 years later I’m still not “over it”. I did have reconstruction which looks nothing like my natural saggy 50 year old-fed four-babies breast. And to this day I still think of it as a foreigner on my once fertile soil – she fakes it pretty good when I am fully clothed but I know the truth and I can’t stand her to get any attention – not even from my husband. I can’t feel her and she’s a painful reminder if what I’ve lost so she’s off limits. One more reason I am grateful I kept my other saggy old breast. I am grateful you’ve opened the discussion here for others considering this option for so called preventive measures. And I can’t help but wonder if the pressure coming from doctors in the civilian sector are driven by ulterior motive$. It’s certainly crossed my mind considering that my doctor was really swaying me the other direction. Either way, these truths spoken here confirm what I was warned about. I wish more doctors would speak the truth. It might not change a woman’s decision but at least she would be fully informed and make an educated decision. She deserves at least that much.

    1. Koryn, Your doctor was very wise. No one discussed the loss aspect of this with me. No one. Of course, I have always realized my bilateral was necessary, but still… I have not completely accepted my implants either and honestly, I don’t think I ever will. I should probably write a follow-up post on that sometime. You make an interesting point about the ulterior motives… I do believe the emotional component to all this should at least be addressed before the surgeries. And yes, I do try to respond to each person who takes time to comment. My readers and their comments mean a lot to me. You’re very kind to notice. Thank you.

  12. I to miss my Breast. My husband is wonderful, we talk openly about it and he touches when I say and knows when I’m feeling insecure. But reading these post made me tearful cause we all are going through the same thing. I am having my surgery for my nipples on July 17, 2014 and am excited but scared at the same time because I don’t want my expectations to be to high. There will never be a such thing as normal again but I hope some day my husband won’t feel like he has to look away from the tv when there is a breast scene just to save me from feeling bad. God bless these blogs and being able to talk freely about it.

    1. Melissa, I understand completely. I feel much the same way you do and I know exactly what you are talking about… I think I’ll be writing a new post about this soon. I had the nipple surgery and the tattooing and things went alright, but that’s about all I can say… I hope you are pleased with your outcome. Good luck and keep us posted. Thanks for reading and sharing. It does help to talk about these things.

  13. I am so glad I found your blog today. It will be two years on Sept 19 since my double mastectomy and diep flap reconstruction. There are many days now that I do not think/obsess about breast cancer or my reconstruction. I am so busy living without cancer for today. Two days ago a friend of mine had a double mastectomy and implants and it has affected me knowing that she is on her own journey and survivorship path.

    I do miss my biological breasts but I am learning to love my new reconstructive ones. It has been quite an adjustment over the last 22 months. I am so thankful for the honesty and candidness to your posts and comments to others posts. We are each unique individuals and there is not a right way or a wrong way to adjust to living without our original breasts.

    But I can attest to the fact that their is life after breast cancer and also a chance of wholeness and completeness with or without reconstructive breasts. I love my fellow breast buddies who share, talk, cry, scream, mourn, joke, and just plain are honest about the changes that come with losing a part of ourselves during this journey. We are courageous…. we are human….. we are feminine…… and we are living fully hopefully….. even with each days challenges feelings triumphs setbacks and even strides forward. I have found an inner strength that I did not know that I had. There are more benefits and positive outcomes that can come out of this experience and ordeal. I will not let cancer take any more minutes, hours or days away from our lives. I hated the fear that I lived with in the beginning.

    I am a crazy, sexy, inspired breast cancer survivor and you guys are too even on our tough days. I am so thankful for all of your sharing. You have all inspired me today. We are ALIVE and living fully in spite of our obstacles. Thank you for sharing your own personal journeys with me. I will be back.

    Momofive

    1. Diana, I’m glad you found my blog too. I’m sorry to hear about your friend. I agree that there is most definitely life after a cancer diagnosis, but it is a much altered one, at least it is for me. I also completely agree that there is nothing quite like the sharing that goes on. It helps. Thanks for reading and commenting. Hope you do stop back often.

  14. I had a bilateral mastectomy in December, DIEP flap reconstruction in March and will have the next stage soon. Friends tell me I look good, but I don’t feel that way. My new breasts are my own tissue but feel heavier and still hard, and even though they feel warm, they have no feeling. I do look better now than six months ago but seeing the scars every day is a reminder that my body will never be the same. Going from diagnosis to now has been a whirlwind and it really hit me in June. I was in a very low place and even considered canceling the upcoming surgery. I was able to talk to someone about it and am going through with what I hope will be the last surgery. I will be having quite a bit of scar revision, fat grafting for the left side, and nipple reconstruction. That should mean I’m nearly finished but I’m still worried about moving on. I chose to have the mastectomy because radiation and hormone inhibitors were out of the question due to other health issues. Removing as much breast tissue as possible was the best solution and I’m grateful to have the cancer out of me, but don’t know if I will ever feel “normal” again. I miss my life before cancer.

    1. Rita, All I can say is I understand. Sometimes it does take a while for things to hit you or sink in. You’ve been through a lot and your body has undergone tremendous change which requires a whole lot of adapting to and a whole lot of healing. And then there is the emotional side of healing and adapting as well of course. I am grateful, too, but I also miss many thing about my other life. Your feelings are quite normal. And speaking about them is healthy and healing too. Thanks for reading and sharing. My best to you.

  15. Thank you. Just came back from Dr. Had left mastectomy 11/12, expander, chemo, radiation than implants 3/14. Very unhappy, can’t stop crying EVERY DAY IN SHOWER! I miss my old self, no one understands. I also have severe vertigo, arthritis from lyme disease as well as cognitive that the chemo only worsened. Out of any options for possible “adjustments”, it all seems to be offered to seemingly make me happy, but half hearted as if I s/b happy because the cancer is gone. Sorry, right now, I wish I hadn’t pointed out any lump and done ZERO about the cancer!

    1. Anonymous, Well, I understand. It sounds like you might need to talk about all this with someone who can counsel you. I hope you do that. You are dealing with an awful lot and it’s hard. It’s been four years since my bilateral and I still miss my old self, but I know I did what had to be done. So did you. Doing nothing would not have been a good option. You’ll have lots more good days ahead. You will! Thank you for reading and for sharing. Keep us posted.

  16. YES, I too miss my breasts and I miss my nipples. There, I said it. I’m in my 30’s, had a high sex drive and I lost my breasts. I think part of the guilt is also survivor’s guilt. I have implants and I hate them. They are so small because of the radiation damage to my skin that I wonder if it’s even worth having them. I also have guilt that before my diagnosis I used to say that I hated my body. I didn’t know how good I had it.

    1. Colleen, I know exactly how you feel, well, not exactly I suppose; but I feel much the same as you. You make an important point that survivor’s guilt is wrapped up in this too. Sometimes it seems we aren’t supposed to “complain” or speak about our true feelings because after all, we are alive. We can and do feel gratitude of course, but we can also mourn the losses. Thank you for reading and commenting.

  17. Diagnosed at 30 with stage 3B full mastectomy and over the next 5 years all 3 reconstructions. I won’t for a second let a boob or this disease define me, my sex life, my children’s perspective of anatomy and the vast differences people have. If you have stared death in the face and fought that stinking hard through chemo, radiation and multiple surgeries and you are hung up on losing some fat from your chest then I feel sad for you. You were given an opportunity to understand life’s exceptional gifts and you sit around moping around about the loss of a boob or two? Yes ladies we have our moments and second guess or critique a body part some mornings in the mirror but for the love of life it is just a boob! Oh and for the lady that couldn’t find a man’s perspective, I hope you like this one :).

    http://oneoldsage.com/2013/05/22/mastectomy-one-mans-perspective/

    1. tceder, Thanks for reading and sharing your thoughts. I don’t think anyone here is sitting around moping and I disagree with you that it’s just a boob. It is, but yet it isn’t. Each of us should be allowed to feel however we need to feel about the whole experience. And mourning the losses is part of healing. I read the post you shared a while back and it is a good piece. Thanks for sharing.

      1. Nancy, Thank you so much for your reply to tceder. I started to reply several times yesterday and finally decided to let it be. You were a lot more diplomatic than I was feeling at the time!

          1. You control the direction of your life.  Only your self-concept limits you from achieving your fullest capacity. The title of your blog reminds you of loss everyday, life doesn’t have to live in the loss it can move past it and live in the now, which is all we have. It is sad that society has bred us to feel that breasts equal women. We are so much more than that. We are granted free will and we certainly don’t have to agree nor will we as our previous life experiences feed our perceptions individually. That is the beauty of being human :). Best wishes and thank you for allowing me to post.

          2. Tanya, I do think about loss every day. How could I not? This blog is a safe forum for me and others to share about all things cancer and about loss of all sorts too. This is my place to do that and I want it to be a safe place for others to do so as well. I do not “live in the loss”, as you called it. Big difference. But think about it? You bet I do. Breasts most definitely do not equal womanhood, but I do miss mine. A lot because they were part of me. If you read some of my posts, you’ll know how I feel about some of those “breast” issues… You’re right of course, we don’t have to agree on everything. We each travel our own path. Thanks for sharing some more of your thoughts.

          3. I can’t answer that question for you I just know that I don’t. I think it is wonderful for people that are encountering the same illness to have a place to feel safe and comfortable and ask questions that no one else would know unless they have gone through it. I am not suggesting that people can’t get up in the morning and are stuck in the this sad place of loss all day so please do not interpret my messages as such. I just personally think that there is life past any illness and no matter what the diagnosis spending a lot of time giving energy to the loss and fear of anything in our lives is not the best use of what little time we have here.

      2. I agree that everyone has the right to feel how ever they like to and for not one moment am I suggesting I didn’t mourn at one point, it is a natural human emotion. I am just suggesting that I have moved on from there and it seems as though some have let this define their life. My intent was not to upset you and I can assure you I have no malice in my message. You will likely dislike what I have to say but the inconvenience of losing a breast is about clothes, bra’s, bathing suits, the truly physical changes of the loss of a breast. I have read many comments on how the loss is responsible for many problems rearing their head through or after this ordeal. I hear women that have allowed this to define them as who they are as human beings. I suggest that the marital, communication, intimacy and the body issue problems with our relationships with ourselves and others existed when we had two breasts and that by not addressing them in the first place is what made us sick. Like I said my intent is not to piss you off unless that will help you see that when you get real with yourself and your life, Breast Cancer can be the best gift you have ever received. Life is too short to be anything but happy 🙂

        1. Tanya, I am not pissed off at all. I believe I am being real with myself. Also, I don’t think speaking about losses means we haven’t moved on, in fact, I think doing so helps some of us move forward. I would call losing your breasts way more than an inconvenience, at least it was for me. As for the relationship problems that you mentioned some have post-cancer, well, I would never make judgments about such personal matters I know nothing about. And as for me calling breast cancer a gift, it’s not going to happen and this doesn’t mean I’m not happy on most days. I guess we view things a bit differently and that’s fine. I welcome all viewpoints. Thanks for sharing yours.

          1. I am not judging anyone or anyone’s situation. Things are as we make them and I wish everyone peace with whatever struggles they are enduring.

        2. I know this response is quite late, but I have to take exception to your statement that the “marital, communication, intimacy and the body issue problems with our relationships with ourselves and others existed when we had two breasts and that by not addressing them in the first place is what made us sick.” I beg your pardon. This blaming the victim and pure BS. I didn’t get breast cancer because of any unaddressed issues and no one I know did. And breast cancer is not a gift. If so, I would give it back.

      3. When I came home from the doctor’s office, still trying to stand up straight and not cry after he told me that mastectomy was my only option, a good friend held me and said “It’s only your boobs”. And that’s what I thought too. Until they were cut off and I went through a lot of hell to get them reconstructed as best possible through many complications. Within a couple of years another friend had to have a DMX. I told her that people would say that same thing to her :”it’s only your boobs”, but the problem is exactly that. It’s HER boobs, not theirs. I know they are trying to make us feel better but they are not us and they can’t truly understand, and they don’t have to live with all the repercussions both physically and mentally. Even my friend who had to have the DMX, who had been so close and heard so much of my pain throughout my ordeal, said she did not truly have any idea until it actually happened to her. Also, I’ve had a lot of people say “Oh, my cousin/mother in law, etc.” had a mastectomy. Just like the man who wrote the perspective about his mother, I doubt these women spoke openly about the distress to body image, the effect on their sex life, etc. I certainly didn’t talk about that with my young son, although I’m sure he could sense the tension in my marriage. At least he was soon old enough to understand that going through menopause–TWICE and unnaturally, thanks to BC– was an understandable part of the source of my problems.

        1. mmr, I appreciate your candid comments. Hearing statements like it’s only breasts, only ovaries, only whatever it might be are potentially hurtful and even harmful. Giving up body parts is tough emotionally as well as physically and if someone truly wants a person going through this to feel better, I say allow them to grieve for the losses because that’s what they are, losses. Thank you for sharing your thoughts.

  18. I’m scared I’m 67 have many health issues meaning my upcoming mastectomy of my right breast is very risky iam also not sure how welli will ope with chemo and loss of my hair whichiso e of my assists ! I’m scared of what they might discover from my mastectomy , they have Lready told me there will be no reconstruction, I cannot find any peace with whats about to happen I feel I am on the edge of a complete breakdown – my family think I am strong – I don’t feel strong I feel very vulnerable which is alien for me.

    1. Carol, Your feelings are understandable. You are facing a lot and so of course you’re afraid. Please talk with your doctors about your anxiety. Perhaps they can suggest someone you can speak with or prescribe a calming med. You are not alone. You can do this. Don’t feel you must fake the strong thing. Tell your family how you’re really feeling. That alone might help. “Being strong” can be such a burden sometimes. And may I suggest my book as something to read that might help before you begin chemo. Good luck.

  19. Nancy, I happened upon your blog tonight and this entry really struck a cord with me. In less than 48 hours I will be going in for another of a long list of surgeries since my bilateral mastectomy since May 2011. The past 3+ years have involved a challenging physical journey as well as a wretched emotional one.

    Right from the beginning, the talk of reconstruction revolved around allowing me to still feel like a woman, to feel ‘whole’ and look complete. I truly bought what they were selling as I was an emotional basketcase, terrified and praying that somehow this would all turn out okay. I spent hours looking at before and after pictures for reconstructed breasts after a mastectomy. I read the book they gave me and never really gave it a second thought.

    But here’s the rub…no one sat me down and talked to me about how I will always be uncomfortable; that the temperature of my boobs will never be that of my body; that my reconstructed nipples will always poke through a shirt because they are always firm; that I would never be able to get comfortable when sleeping at night; and the kicker that I neglected to know what that my breasts would never be a source of sexual pleasure ever and that they would pretty much feel numb all of the time. Those things were never talked about, discussed as possibilities or actual occurrences. And though the decision was mine, I feel as though I was duped about how ‘easy’ this whole process would be.

    It has been far from easy, and after 3 years of physical and emotional torment my implants are coming out on Monday. And though I am terrified of surgery, I am actually EXCITED about Monday. I can almost feel having my body back as my own when they remove the aliens that took over my body the past 3 years. My husband and I have spent countless hours talking about this decision and we both know it is the right decision for me and I’ve prepared myself for what things are going to look like post implants. I have readied myself for a flat chest with a couple of scars that will diminish with time…but I will have my body back. And that thought brings a peace to my mind that I have not had in a very long time.

    What astonished me through this entire process, though, was the day I visited my surgeon to tell him what our decision has come to after chronic pain. I explained to him why I have made the decision, and that I am completely fine with having a flat chest with nothing on it but a couple of scars. I explained to him I was excited about never having to wear a bra again, not having to worry about nipples poking through my shirt or bra, and that I will be able to return to the gym and work out the way I used to. I have spent the last three months picturing myself free of these monsters that are in my body.

    My surgeon turned to me and indicated that he was not okay removing the excess skin and nipples once the implants are removed. He said it is the exact opposite of what he does and that he thinks leaving the skin and reconstructed nipples will allow me to look like I have pancake breasts but at least I will look anatomically correct. I explained to him that I didn’t want that and I was ready for a clean slate on my chest. He told me again that he thought there was something wrong with me if I wanted mastectomy scars across my chest instead of sagging skin that is suppose to resemble a breast. I looked at my husband for help and he jumped into the conversation but we gained no leverage with the surgeon. He indicated he would only remove the implants and do the capsulectomy but he would not remove the nipples and excess skin. I was heartbroken. I had envisioned myself for months the way I wanted to look after all of this because to me it feels free. Sitting in that office with the surgeon I slowly began to see myself spending the rest of my life trying to hide these two sack of skin on my chest. That’s not what I want but that is what the surgeon wants. Why doesn’t it matter what *I* want? Why is it not okay for me to be okay with the mastectomy scars?

    Needless to say I left the surgeons office in tears and ready to throw in the towel. My husband helped talk me off the ledge and indicated that we’ll get the implants and scar tissue removed and then in 6 months after I heal and the skin shrinks down after being so stretched, we will find somebody to remove the excess skin when it’s time. I felt like I was a horrible person when I left his office because I was okay and prepared for just having scars on my chest. I angers me that he made me feel like I was a bad person for even requesting it.

    I only hope most woman do not go through the torment I have experienced the past 3 years. And I pray that those who do choose reconstruction have great success. I also hope that as more women seek information about reconstruction that they’ll know the *entire* truth and be able to make the decision that is best for them.

    Thank you to all of you for sharing your experiences in our journey together.

    1. Brandy, Thank you for your thought-provoking comments. I am sorry you have been going through such agony following your reconstruction. Implants are not an easy fix, nor are they right for everyone. I’m not entirely pleased with mine either and I do feel as you do that many of the repercussions aren’t addressed enough before a woman chooses them. It’s too bad your surgeon was so non-supportive about your decision to remove them and I’m sorry he made you feel badly – that should never happen. Your advice to make decisions based on complete and accurate information is well stated. Thank you for sharing about such personal matters. And kudos to your husband for being so supportive through it all.

  20. After cancer diagnosis, lumpectomy and path report that stated clear margins were not found I had to have total mastectomy. The field of cancer was too big for radiation and onco dx says return of cancer is slim. So now I have a bright outlook. Except for the giant saggy breast remaining. When I spoke to oncologist about removing or reducing they said no because there is no clear diagnosis of cancer. Yes, there is some calcification. Yes, it’s spreading and growing, but we won’t support removing a “healthy” breast. Well New lump presented itself but because of dense tissue could not be located. Every time I brought up removing, the oncologist and his henchman looked at me as tho I were insane. They said we could discuss reconstruction. That was never an option in my plan book. What is it with doctors and their nurses?? They behave as if it’s their idea to remove our breast it’s because that’s scientific and we should just accept no questions. But if we want to remove instead of reconstruct that we are mentally unstable and need to be monitored. The philosophy used to always remove the breast regardless and everyone used to get up in arms at the doctors. Now that we, the patient embrace that thought, we are judged incompetent to make that decision. Insurance companies are no better. These decisions are not made lightly or without passion. Often we are forced to push aside our fears, sadness, pain and temporary insanity to agree to the series of surgeries to rid our bodies of cancer. There doesn’t seem to be a hesitation of total hysterectomy – why? Because no chance of reconstruction? Let us decide about our breasts. It’s the last control we have. It took me seven months and much discussion to get what I wanted, but I got it. The discussions with a surgeon who understood finally what my oncologist or his staff do not, will not or don’t want to have brought me through to a place where I can finally now move on with what I have left, who I am now and live more productively rather than retro wishing for parts lost, time lost, life. I am grateful for a compassionate surgeon. He did acknowledge that I was more right in the view that plastic surgeons would “build me” in the image of their mind NOT my mind. I asked, if it were you NOT your wife but you, would you trust someone to rebuild you or would you ask to be changed to your view so you could go on with life. He understood.

    1. Lin, I’m glad you found a surgeon who understood what you wanted. It shouldn’t be that hard. Thank you for you sharing about what you went through. And you’re so right, it’s not like we take any of these decisions lightly.

    2. Lin, There is a big takeaway from your story that I hope others with similar stories to yours will see. You stuck to your guns and were not deterred from finding another surgeon with the vision to see other options and to respect your decisions and your vision. They may not be the majority but they are out there. Nancy is so right, it should not be that hard and Lin, there are women out here on a mission to see that changes are made in the attitudes of the medical community so that your compassionate surgeon becomes the norm. We recently launched our own website at FlatAndFabulous.org

      Personally, it is odd but I actually more grieve the breasts I never had. I went from flat to enormous so quickly and so close to puberty that I never had the experience of seeing myself with normal sized breasts. Oddly the day I would get a glimpse of what might have been was standing alone in a dressing room in a mastectomy shop with prosthetics. I had lived flat for so long by that time that the B cup seemed enormous. Yet in that moment I clearly saw what might have been if I had ever succumbed to the literally daily thought about reduction. What I knew from researching reduction was that due to my extraordinary size it would almost certainly have ended up the same as those who chose reconstruction, with at best good looking numb non-sexual dead lumps. If it went wrong? Too devastating to contemplate. I did wear breast forms for a time. They tended to aggravate the nerve damage making me too often rip them off half way through the day. The 1½ yr I lived flat before being able to wear forms let me know that I was fine without them. Ultimately I quit wearing them, in no small part for comfort but also to be a face for a change in attitudes.

  21. Thank you for your blog. I had a double mastectomy one and a half years ago, and I miss my breasts. I am grateful to be alive, but you are right when you say that I feel almost guilty that I should miss them. I know friends who lost mothers through breast cancer, and they do not understand my grief, and tell me that I am lucky not to have seen the other side of breast cancer. I know that I am lucky, I also feel unbelievable sadness at some times and know that this is just a process and I will get through it. I had reconstruction done at the same time, and a year and a half on there is a lot of numbness, but thankfully now no pain. I also believe that the cancer came through IVF treatment, because I had multiple cancers, and one private doctor did reveal that there are reports that link multiple cancers to IVF treatment. Of course, I will never really know. No one told me at the time that I would be refused embryo transfer because I had cancer (the irony) and that I would have to wait three years to have the transfer done. For me personally, the reconstruction has helped me to come to terms with the mastectomy, but its a very personal choice. This is the first time I’ve shared my journey, so I want to thank everyone for sharing theirs and giving me the courage to talk about mine.

    1. Tracey, Welcome and thank for sharing some of your story. It is normal to miss your breasts and your pre-cancer life. You are only human. Of course, we are grateful for being alive, but we can still grieve at the same time. Feelings are complex. Sometimes very complex. Again, thank you for sharing. You are not alone.

  22. I had my double mastectomy 9 years ago, at age 49. The left side had DCIS stage zero, but in two quadrants of that breast – so I ‘qualified’ for a double mastectomy and reconstruction with silicone implants. I felt fortunate to be able to create two new and matching breasts and felt lucky to not need chemo or radiation, or any further stressful mammograms, because of removing all of my breast tissue. I focused on being strong (for my family, etc) and so did not allow myself to mourn the loss of my breasts. The (degrading, disgusting) drains and weekly trips to the plastic surgeon for ’tissue expansion’ made for a long, lonely summer (because I played down all those events in order to ‘be strong and positive’.) But – I’ve been, for the most part, quite happy with my results – my scars quickly became almost invisible on their own; the new breasts look rather odd-shaped when naked- but not freakish. I had a simple procedure a year after the mastectomies to create some nipple effect – but that was pretty much ineffective. So, I decided to have cosmetic tatooing done, and searched out a really good permanent cosmetic artist – to a decent effect. But – I miss my real nipples immensely! It was my nipples that gave me my sense of my breast identity, I only realized AFTER they were gone. It’s not the breast tissue I miss, but my beautiful, functional, nipples! However, the hardest part by far has been my husband not once looking at my post- mastectomy breasts, and certainly not touching them despite my encouragement. Though he ‘said’ he was not a breast man and so not worried about my loosing them… our sex life has changed, and become boring and pro forma. i feel like I am distatesful to him because I am not what i was. I don’t think he was truly honest with me -or himself- about the effect it would have on him. Tonight I found that he has been searching for pictures of (young) breasts online…and the repressed loss I feel for my breasts and nipples, and lost youth, feels really overwhelming. I do feel I had a great ‘team’ consisting of a breast surgeon, plastic surgeon, gynecologist and oncologist – who really worked together and were each very compassionate. What was missing and necesary from that formula was the psychological piece – to help deal with the loss. We become so focused on being grateful to be ‘staying alive’ that we aren’t allowing ourselves to demand the psychological space and information about becoming new sexual beings with our partners. And all of this so often happens at a stage in our life when we are already so vulnerable to shifting body images due to age, and a culture that values only youth and in-your-face-sexuality, on an internet bursting with images of air-brushed, well-lighted, lingerie-clad, plastic-surgery-enhanced female bodies with no personality or intelliegence…paid sex workers and models to lure and entice our partners. How can our marriages and partnerships survive the massive presence of pornography at their fingertips just a click away?

    1. DWR, I understand about missing your nipples. Did you happen to read my post called, “Nipple Envy”? We are, of course, grateful to be alive, but at the same time we do need to grieve for the losses. Giving up body parts is hard, as is having them drastically altered. I’m sorry your relationship with your husband has become more strained. I agree that the physical changes we go through are very difficult and society does indeed make it even more so. Hopefully you can work through your issues and figure out how to best move forward for you both. I wish you all the best. Thank you for sharing about such personal matters. I know none of this is easy.

    2. Kent,

      I am so glad you made this post, and do hope that Maxwell reads it as well. His frustrations were clearly obvious. My husband and I did talk about all these things numerous times. That being said, I don’t think that someone who literally had her hormones turned upside down in addition to all the work I had done, was out of line in being a bit upset by finding her husband looking at porn. Yes, it did spark good conversation after the initial shock. And Maxwell, not everyone is a “drop to my knees” kind of guy. Too bad that couldn’t of kept the cancer and my genetic disposition away or I would have insisted he let me do it more.

  23. I’ve just come across your blog and I do identify with you on the dark side of AIs. I’ve had two years of letrozole but a new occurrence got me off that for a while and now I’m on Aromasin. The weeks without letrozole were joint pain free. So far I’m not so bad on aromasin but it’s early days.
    I just wanted to say that I don’t miss my large pendulous breasts at all. They let me down twice with cancer and caused years of unwanted male attention. I have had a bilateral mastectomy and reconstruction and my new pert smaller breasts that allow me to wear nice clothes and exercise with ease are a thrill every day.
    I can wear lacy tiny bras and can turn over in bed without trapping a large breast. I haven’t got nipples yet and may not bother as nipple show is a pet hate. My husband loves me either way but I love my implants and doing all I can to get rid of the fear of a third occurrence. I’m sorry so many dislike their reconstructions this is a hard illness to get through without extra grief but just wanted you to know that this is one survivors who sees her changed breasts and feel happy and free.

    1. Christine, I’m glad you are pleased with your reconstruction. It’s not that I’m displeased with mine, it’s just that I’m not pleased either. I miss my old breasts. A lot. Thank you for sharing.

    2. Hi Christine! I am of a similar mind as you – will be happy to be rid of my large breasts and have small manageable implants. How was yours done? Straight implants or stretchers? Did it take long to heal? I am wondering if a skinsparing mastectomy with immediate reconstruction would be the way to go – my natural breasts are size ff so there should be more than enough skin for size c implants.
      I thought of just getting nipples tattooed, much less hassle.

  24. Thank you for saying you miss your breasts. When I was first told they definitely weren’t cysts, everything started happening so quickly, and I was 30 and had always wanted a reduction. People always used that as the bright side. I always feel guilty thinking, a mastectomy is not my idea of a breast reduction. Thank you for saying what I think most days. Your post was helpful.

  25. I to have had bi- lateral breast removal and construction. I do miss my body parts after all. I wish I had time to come to terms with my choices. I feel lost somehow. I have faith and deeply believe in God. But… My husband, children, family members and church members act sometime like it was nothing. I went thru so much in the last year and a half. I feel like I need someone to help me thru this. Maybe its me??? I feel like your in side my head, Nancy. Thank you for what you have said . Maybe, spouses need to read this, too. For someone to judge that has never been in these shoes may they have mercy placed on their souls. It is hard enough for a person to go thru, Chemo, surgeries and the side effects on a person. I know that I just need some one to hear me and not act like they know what I am going thru. Maybe, a sounding board, A listening ear. I am human an still have feeling attached to me. I still get emotional . Maybe my body is not intact but my hear and mind are. I still feel out of control. Maybe because I let this all happen with in like a few months of each other. After all that I tried going back to work and I couldn’t. I have even resumed my normal duties at church and church school. I may have inadvertently made a mistake. I wanted to show them I was strong. When I needed to be held and taken care of. I have always been the fixer and when I need help with the fixing no knew how .:(
    Thanks for all you said it was refreshing to me. selina

    1. Selina, I am on your side. Cancer is a string of losses in more ways than one. The thing is, no one can fix this. Your supporters can best support you by just being there, listening and not judging you. Perhaps you might consider speaking with a professional to find some guidance through this maze that is cancer survivorship. You’ve been through a lot and it’s not like you wake up one day and it’s all over. Thank you for sharing.

    2. I am so sorry for your loss. It has been 3 1/2 yrs since my bilateral mastectomy and diep flap reconstruction. I too have a strong faith in god but my relationship with my Christian church has changed since the breast cancer. What you went through, what I went through and what any woman or man for that matter who goes through breast cancer is a significant life change. It is not something to push under the rug. I experienced soul searching during the first year. Jesus understands our suffering he never minimized his friends pain or discomfort. He provided healing and understanding. I even studied Job and his faithful friends also weren’t sure how to handle his difficult circumstances. That’s why we have blogs like this…. breast cancer support groups….. and even individual counselors who can help us during the difficult times. You are not alone in your feelings. We are hear listening, hearing, empathizing and understanding. Your sharing helps all of us and those after us who have the same difficult choices to make. I am at peace with the choices I made but it took a little while well over a year. You might want to look for the from lumps to laughter website it helps breast cancer survivors deal with our circumstances from a Christian perspective. I received a lot of comfort and understanding there too. Thanks Nancy for keeping this dialogue going. The longer time goes by…. I don’t forget our losses…. I just keep getting to integrate them into my new life after bc. Thanks for listening.

  26. I”m 41. A single mom-a single mom that always thought I would have time to “find love later.” I’ve always had large breasts-36DD-and I have always taken very good care of my body. I’m on my 14th chemotherapy treatment. I get four Neupogen shots a week. My life basically sucks. I was diagnosed with Triple Negative breast cancer-and I also found out I am BRCA1 positive. I have been thinking about having the test again. I actually loathe people that make comments like “you aren’t your boobs”. Ummm, yeah, no kidding-but I am also not a disfigured Frankenstein either-and that is what I am going to be. I wil obviously be single for the rest of my life-because I aready know this is going to destroy me. I don’t want to do it. I don’t think I’ve read very much anywhere that indicates happiness. There’s a few women here and there that i genuinely believe made it out happy-but the pain, the complications, the self image problems, the relationship problems, the pain….there’s so much physical pain noted everywhere, seems to be the real truth. The idea of going through all of this chemo, mutilating myself, and seeing over and over that not very many women seem to be happy after it’s all over…I can’t believe this is what my life is going to be.

    1. It is not all doom and gloom in the breast cancer world. I have been in support groups for cancer off and on for three and a half years. Today I’m writing my response from the top of wolf rocks in Pennsylvania on the appalachian trail. I’ve completed four states and over three hundred miles starting 3 yrs ago after the start of healing from a double mastectomy and Diep flap. I see men and women on the trail all the time who are living full lives in the recovery stage of after cancer. There is a beautiful view and fresh air all around. Yes my body feels a little older and my reconstructed breasts are still numb. But the rest of my body is working hard to stay healthy and alive. There is so much to live for. I have five kids to get married and have grand babies for me. Honestly two daughters still have high school and college to finish. And the two youngest boys need their mom to show them that she’s going to be around a long time for them. It’s ok to share our pain and struggles but we must focus on sharing our love our success and our living too. Good luck.

    2. Marie, The things you are dealing with and sharing about here, are and will be difficult. However, there is still lots of good living to be done. Cancer sucks. Your life does not, or hopefully with time you will begin to feel that it does not. And I don’t think you should assume you will always be single now. Despite the challenges, there can still be love and a satisfying sex life during and beyond all this too. Hang in there. Hope you find someone to talk openly with about these things. Wishing you the best.

    3. Dear Marie: You have probably had breast surgery by now and I hope you’re healing well and getting stronger. It’s important to remember that when reading blog comments, you’re seeing other women at a moment, or snapshot, in their diagnosis, treatment or recovery. It’s always a long process, and we tend to reach out in those moments when we’re in the most pain. These snapshots don’t accurately represent the long process breast cancer patients go through, nor do they give you a good idea where they end up. A lot of women survive, and not just survive, but are able to be well and strong, live full lives, and have full relationships with men. Just one example: my stepmom married again at the age of 65 after my dad died. She had a bilateral nipple sparing mastectomy with no reconstruction and a hysterectomy, all within the previous 5 years, and she did a LOT of yoga. I totally get the Frankenstein thing, except I called my reconstructed left breast and DIEP scars “Bride of Frankenstein Barbie.” Because truly, they have better contours than my natural breast and tummy did. However, due to complications, my breast skin couldn’t be expanded, so my breast mound is obviously non-native tissue attached to my former breast site. How I see this new body has changed so much. Yes, it doesn’t feel like me because of numbness, but the horror I felt for a long time has passed, and it will for you too. My PS says that I’ll recover some sensation after a couple of years, so maybe the numbness too will pass. You can realize that they love you and are trying to help, and then ignore everyone who says (1) You’re alive! As if that somehow means you should not feel grief and sadness to lose your breasts, and (2) Your breasts aren’t you. My mom says “the real you is in your head.” My husband says “You are more than your breasts.” Wrong! The continuity between your consciousness and your body can’t be separated like that, unfortunately. Only people who have lost their wholeness somehow really get that. Once my body was changed, I had a weird, disconnected, feeling like I wasn’t myself anymore. After a while I realized that it wasn’t because I had changed, because when you think about it, our bodies are constantly changing. It is the abrupt change that is so disturbing, but once you stabilize, you will become adjusted. It’s a huge, huge shock, no matter how much you think you were prepared for it. When I was done grieving, which for me took the better part of a year, I realized that I had to stop focusing on how I look, and start focusing on how I feel. I realized how really great it was to not have the obnoxious hollow under my collar bone that was there when I had to go flat after my tissue expander got infected and had to be removed. And how I fully had my sense of balance again, and how my oncologist said that women with one breast always get a lot of back problems. It was then I realized that the reconstruction was never really about how I looked; it’s about function, and about feeling normal. I started working out, and trying to get stronger. But most importantly, I started trying to visualize the future me, healed and well and strong, with my daughter during the important events of her life. Maybe with a nipple tattoo, maybe with a breast mound tattoo to cover scars. It’s still a work in progress.

  27. Nancy, I am so happy I found this blog…and this particular post! I am a week away from removing my healthy right breast, after a left side mastectomy last year. Because of radiation, I needed to wait for reconstruction, which in a way was a good thing. A dangerous arrythmia was discovered to have been aggravated by chemo, so reconstruction was put off til that was settled. And then due to scans I had, because i had to stop the Herceptin (the drug that caused the arrythmia), they found a tumor in my brain. The day they found the tumor, was the day i also met with the plastic surgeon to plan my reconstruction! So….long story short, no reconstruction for me, just going to be flat. In my mind, I had three choices, stay lopsided (which i hate!!), have reconstruction (and probably still be unhappy with the results) or go completely flat.
    Thank you for posting about missing your breasts….I miss them every day, how could you not? They don’t discuss the emotional part, the doctors are so concerned with removing the cancer, that discussing how you are going to handle the emotional part of it, is just not talked about.
    So now I deal with the loss and the fact that it is metastatic. No evidence of disease at this time, but we all know, it’s just a matter of time. I might as well be as comfortable in my mind as i can be…and for me that is flat and fabulous (or at least faking it, til I make it!)

  28. I have DCIS in my left breast, my lymph nodes were clear but my margins were not. My only sister, who is 15 yrs older then me (I am 46), had stage 2 DCIS and had a mastectomy without reconstruction and chemo. My sister has a prosthesis. My next surgery for the mastectomy has not been scheduled yet as I have to meet with the plastic surgeon first to discuss my reconstruction options.
    I have pretty much made up my mind to go ahead with the TRAM reconstruction. But now, after reading these posts …. I AM LOST!
    I have prayed that my vanity does not make this decision for me. I know with the TRAM comes removal of tissue from the stomach which will give the appearance of a tummy tuck. I also know muscle will be remove which will cause me to never be the same again. What I wasn’t understanding, until reading these posts, is the possible chronic pain. My nipple aches every day from the 4 isotope injections, not that it matters now cause it will soon be removed, but I wonder if my margins had been clear, would this ache ever stop?
    There is a website run by this beautiful women called “Bold and Breastless.” Her name is Shondia, at age 36 she had a bilateral mastectomy and opted not to have a reconstruction or to wear a prosthesis. I also friended her on Facebook which gives up-to-date pictures of her living her life without breasts. She is not limited by pain, physical or mental. I can’t help but think that this is the kind of life I want, even it it means not having any kind of reconstruction. I don’t want my life stopped by pain, my husband and I want to travel, we live in sunny California which is dominated by body image but I know I can make the necessary adjustments to live here without breasts if it means I’m able to enjoy our life without experiencing pain everyday.
    I AM STILL LOST about whether or not to have the reconstruction, my appointment with plastic surgeon isn’t till May 3rd. I would greatly appreciate any further information, website or person(s) you could direct me to to help me make the best decision for me.

  29. Hi there! I’m almost finished with chemo, will have surgery in June. Due to fact that there are 2 separate primary tumours in one breast, the decision from the start has been to do a mastectomy on this breast. A recent sonar shows that the tumours are responding very well and have almost halved in size.
    I am 42, stage 2a, ER +, PR +, HER2 –
    I want a double mastectomy – not only to make sure I don’t have to go through this again, but also because it would give me the best chance for a good reconstruction.
    I have large (F cup) breasts, and cannot do flaps if I need a double reconstruction as I am too trim.
    So I will go with implants – but it sounds like the best option is to do a skinsparing mastectomy and then do the implants immediately? There is a very good chance that I might not need / won’t accept radiation, but if I do, it will have to be stretchers and delayed reconstruction.
    I don’t really see any other options? Does anyone have any information or advice re radiation after double mastectomy?

  30. Hi Nancy,

    Thanks for this blog. I was searching today because I have extreme itching internally and have had it off and on since my modified radical mastectomy 33 years ago. I found a bunch of comments from Doctors who said it is un common, but I have it typically in the spring for up to a week at a time. I had a reconstruction tucked under my latismus dorsi but my Mom has it too and did not have any reconstruction. Her mastectomy was five years after mine. Some of the answers point to overstretching, but I can’t say I am sure of that.

    I too miss my breasts, it’s only natural and it goes on, though not a constant thing. Mine was at the age of 28 and now in my 60s, the remaining breast is much larger than the reconstruction. Don’t want a reduction since I am leery of cutting into the remaining breast and triggering some new problem. For those with this problem, I make my own “padding” by sewing two bra cups together and adding a silicone gel “pad” you can buy at fabric stores meant to increase cup size. Much cheaper than pros thesis (wouldn’t be covered by insurance for the real breast). Finally I am not coming at the world on a diagonal any more and my clothes fit again. Just put inside the bra on the low side and use double stick tape to secure the gel, safety pins to secure the outer cup to the inside of the bra cup.

    Belly dancing has been the answer to make me feel feminine again. I only wish I had found it earlier! My husband struggled with the whole thing and early on in the midst of a store informed me that he “didn’t have to worry about other guys hitting on me because no man would ever want me now”

    He Iinformed him that anyone who felt like that was wrong and I wouldn’t want them. He doesn’t even remember saying it and now denies he did. We are still married, but that changed my feelings for him forever as I think he really believed it.

    There IS a life after breast cancer and you have to take your own measures to find your own solution, but I hope these two things that are helpful to meme will help someone else.

    1. Hi Lin – thanks for sharing. Wow, not only did you have to deal with this at a young age, but you’re a longtime survivor!
      I am 42 and 2 weeks away from a double mastectomy. I am very thankful that I listenend to my gut and got a second opinion and eventually changed dr’s. I honestly belive if I stayed on the original course, I would be very ill by now.
      You’re right: take your own measures to find your own solutions. One of the hardest things about cancer is feeling like you’re loosing control.
      Stay strong and stay beautiful. (Your husband is wrong!)

    2. Lin, Thank you for sharing. It makes me sad your husband said what he did as things like that aren’t easily forgotten and such a comment must been very hurtful to hear. I’m sorry. We all deal with our situations as best we can and yes, there’s definitely life after a cancer diagnosis, but it is altered forever, at least it has been for me. Thank you for sharing your sewing tip too.

  31. I had a prophylactic bilateral mastectomy with immediate reconstruction just over a year ago (at age 34). I am BRCA2 positive and P-53 positive. My sister (at age 30) and my aunt (at age 50) both had breast cancer. I had dense breast tissue and previous fibroids. I went to three different doctors and a genetics counselor who all agreed that since my risk for developing breast cancer was so high (as much as 90% in the next ten years), mastectomy was strongly recommended. I felt like I had no choice, but still waited a year to go through with it. I wish I had listened to that little voice inside that said not to.
    I hate everything about it. The divots my newly rearranged pectoral muscles make in my pseudo-boobs every time I have to use them repulse me. The parts of me I can no longer feel and the distorted sensation of the things I can are frustrating. Painful too. I opted for nipple sparing, figuring that it would help me feel more “normal” in the end. I was told I may regain some sensation in them….maybe. No one told me that sensation would be pain, similar to that of a bad bruise, every time something rubs across them. I sometimes still get sore picking up the little ones, or get a sharp pain when I push myself up on one arm. Sleeping is difficult. Working out is hard. Sex is different. Even hugs don’t feel the same.
    I absolutely miss the old me. MY breasts, MY nipple sensation, MY body. MY life. I am angry and bitter and I feel horribly guilty for it. What’s worse is I did this to myself! I wasn’t sick! It embarrasses me that I have been so adversely affected by what I thought was a carefully considered and well-researched decision. I wish I had found this wonderfully honest, open post and all the raw, unabashed comments it illicited a year ago (yes, I read them all). Maybe that decision would have been different. Best wishes to you all in your journeys.

    1. Dear RAGR,

      While I didn’t choose the bilateral mastectomy, I understand exactly how you feel. I am only one year out, with pectoral breasts and tons of pain. I was optimistic about working out, but that became exhausting all over again. I know it clearly doesn’t feel like it, but you gave yourself a chance. 90% within 10 years seems like too high a percentage to hesitate. I am sorry you are going through the guilt and anger, but so far what I feel is exactly the same. You are not alone. I did have to start counseling to deal with the massive anxiety and angry outbursts (I was out of control), but I do find that if I focus on the small things that make me happy make it easier to deal with needing six pillows propped under my body to sleep, the constant nerve pain, or any of the other hundreds of random things I never had to deal with before. My plastic surgeon keeps telling me that I need to get used to this body and say goodbye to the one I was born with. I am still working on that. I hope that one day you feel at peace with the decision you made, because the alternative seems pretty scary. Just keep telling yourself that you are not alone, and what you’re feeling is normal, or as normal as these things are.

      With Love,

      Ally

      1. Ally-
        I have tried to explain to loved ones, friends, and my doctors how I am feeling. I think you are the only one who has heard me. Thank you for that. <3
        RAGR

    2. Dear Regretful and Guilt Ridden: Girl, you did the right thing. Give yourself a break! It sounds like you have little kids, so visualize the path you had a 90% chance of being on. Premenopausal women get more dangerous, more aggressive breast cancers that are very hard to cure. Imagine how guilty you would be if you were dying in your 30s or 40s and you had a chance to stop it, but didn’t. Take it from someone who’s old enough to be your mom and has been through it. You will never be the same again, but you will be strong and well. Grief and regret are a process. Learn to practice mindfulness so negative thoughts aren’t wrecking your peace. Focus on making the body you now have be what YOU want it to be. Numbness is going to be there, but don’t accept the end result if you’re in pain and discomfort.

  32. Just stumbled across your blog and I was so touched by it. I had a bilateral mastectomy with immediate reconstruction for DCIS with no chemo or radiation and am getting ready for my ssco d reconstruction revision surgery. Not sure I will ever feel normal again. So far I am just sad a lot. I know I should be grateful tbst they got all the cancer out but so far I just really miss my breasts… Thank you for your heartfelt story and to all the other comments from such courageous women. I don’t feel so alone as much.

    1. Carrie, I have learned we can feel many emotions all that same time. Of course we are grateful to be alive, but we are also entitled to grieve for body parts we have had to give up and other things as well, of course. Thank you for sharing. I’m glad you stumbled upon my blog. Welcome.

  33. This isn’t a comment, but a question. Next week I am having surgery to “cleanup” my mastectomy scar. Biopsies will also be done. Is there anyone who can tell me what to expect? I take care of my 2 granddaughters everyday. I’d appreciate a realistic time frame for recovery. Thank you! Paula Jo Thomas

  34. First, Paula you do not have to do any surgery until you get real answers. If it takes a few more weeks, will that affect the outcome of your surgery? What your thoughts and emotions for the rest of your life are the most important events at this point. Do NOT consider the surgeons feelings or the hospitals schedule or anybody else except yourself. They will never give you a second thought as they move on to “next” in their reconstruction factory. Find the answers to your questions.
    Second, I am ten years out from bilateral mastectomy with reconstruction. Mine were under pecs silicon implants. Really a long, disrupting event. Radiation encapsulation, they hurt like something trapped and hanging off my chest. No upper body strength, etc. had them removed. On the other side I do know women that are ok with them.
    After 10 years I still have dreams about my breasts growing back. Yep at 65 I still miss my breasts and mourn their loss. My point in responding to this blog is to let each person have one more experience to take in.

  35. Shortly after my last comment, my husband came across an article on “pre-pectoral” or “subcutaneous” breast implants; a method where the implant is placed on top of the pectoral muscles as opposed to under it. I brought it up to my plastic surgeon. At first he asked why I wanted it, which I thought was weird, but I explained the pain I was still experiencing and the restricted mobility. My P.S. explained that although not everyone is a good candidate for this, he felt that with the width of my chest wall and ‘fat pad’ on my chest, that I was. He explained he may have to make new incisions. I didn’t care.

    Fast forward 8 weeks and I feel amazing, like I had been tied up and have now been cut free. This is not to say I am pain free. My nipples still feel like they are bruised, the pseudos are still on the cold side, a bit hard and far more stationary than the real ones. Sometimes I still just ache. BUT… I can move more freely. That constant weighted, knotted up feeling is gone. The tugging and pulling has been reduced to nearly zero. As an added bonus, I look better too. I have a more natural shape and even a little cleavage!

    I know I will always miss what was, mainly the actual feeling in the area. However, this “subcutaneous” way of life is far more manageable. For as awful as everything about this has been, this I can deal with. Without the incessant, searing, crippling pain accepting a new normal doesn’t seem so out of reach. Maybe this method would work for some of you. Again, best wishes to you all.

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