Monday, November 16, 2009

Dirty Words

Recently, I heard a woman who had delayed reconstruction describe her experience. She had wanted immediate reconstruction but was forced to delay for medical reasons. After her mastectomy but before her reconstruction, she said she felt "mutilated" and "disfigured." She believed that she had lost her sexual attractiveness along with her breasts. She hated the very idea of prostheses, with their connotation of "amputation," yet she couldn't bear to go flat.

I cringed at the words this woman chose to describe her breastless state. Her comments reminded me that although I don't think of myself as mutilated or disfigured, others may regard me that way. As anyone who's visited BreastFree.org knows, I view my decision not to have reconstruction as a positive one. I think of myself as "breast-free," not breastless. But I realize that not all women feel as I do about living without breasts. There seems to be a special kind of self-confidence possessed by women who don't feel the need for reconstruction.

That's not to say we all have fantastic body images. I've got plenty of insecurities—my feet are too big, my eyebrows too wiry, my legs too skinny, and on and on. But for some reason, I never regarded having a mastectomy as mutilation or disfigurement. Nor do I feel as if I've had an amputation. That's why I prefer the term "breast form" to "prosthesis." When I look in the mirror, I think I look okay. Not gorgeous, mind you, but just fine. And when I go out into the world, I feel just as good about myself as I ever did.

Choosing to live breast-free also reflects my belief that our culture is far too obsessed with youth and beauty, and particularly obsessed with breasts. I feel that ideally I should focus on what's inside, not that I've always succeeded in doing that. But needing a mastectomy really forced me to put my beliefs to the test. I wondered if I could I feel whole and attractive without my breasts. To my relief, I've found that living breast-free truly hasn't made me feel less beautiful, less womanly, or less loved. So in a certain sense, I regard myself as lucky to have been through this experience. Not that I'd wish it on anyone else. But sometimes misfortune really does create an opportunity for personal growth.

If you've chosen not to have reconstruction, I'd love to hear your thoughts on why you're comfortable with your decision and I'm sure others would read them with interest. Please feel free to comment below.

24 comments:

  1. I am having a bilateral mastectomy in the morning. I have chosen not to have reconstruction. Since my surgery date was set - I have come upon many very opinionated people when I share that, no, I am not having reconstruction. I feel that I am as comfortable as one can be with my decision. I had just printed out the positive reasons many women decide not to have reconstruction from your home page when I came upon this in the blog. Yikes. I know that being breast free (and let me tell you how much I love that phrase) is going to be an adjustment, both physically and emotionally. I am looking forward to being healthy. I hope the woman you overheard finds peace in her life. Thanks for the website. It has meant more than you will ever know to me while I have been on my journey. Denise

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  2. I had my bilateral on oct 1st. The amount of pressure I got from my surgeon to have recon was insane. I am SO happy with my decision.

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  3. Christine - checked the blog before leaving for the hospital to have my surgery - thank you for taking the time to post. I needed that last minute positive note.

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  4. Denise and Christine,

    Thanks for your comments. Many surgeons seem convinced that women can't be happy without reconstruction. Some don't give us much credit for knowing our own minds.

    Denise, best of luck with your surgery. I hope you have a speedy recovery with little pain and discomfort. And I hope you find that you enjoy living breast-free.

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  5. I had my mastectomy 20 years ago, at the age of 37 and did not choose reconstruction, because I wanted to feel whole and healthy without foreign material in my body or having to alter other areas of my healthy body.

    I've never felt mutilated or like I had an amputation. When I hear those words, it seems like a huge exageration. Loosing a breast, for me, does not equate to 3rd degree burns, having ones face ripped off, or loosing an arm or a leg.

    I guess it all boils down to how each woman feels about their breasts and how important they are sexually or as it relates to body image. Personally, I would choose nice hips and a butt over large breasts. I have always been a 34D with thin legs, flat hips, and no butt.

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  6. I chose no reconstruction 3 months ago with a bilateral. I had no idea being a petite 32 C/D cup was going to be such a problem with the mastectomy bras. There is nothing out there for small, full cup women. 34 band size is the smallest in most bras, especially any newer styling. The bras also show in all my clothes because the front middle portion is too high. Maybe because I'm new to all this I'm just wondering why don't they just make light, fully padded, cheap bras without protheses or foam inserts needed? Seems like it would be easier.

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  7. Barbara - My surgery went well and despite a low hemoglobin my recovery and pain/discomfort is manageable.

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  8. Denise,

    I'm glad you're on the other side of surgery and hope your recovery continues to go well.

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  9. I agree I have never felt like I had been mutilated. I had a double mastectomy with no reconstruction almost one year ago. I was 34 when diagnosed.My doctors felt I should reconstruct because I was "still so young" but i knew from the beginning that reconstruction was not for me. I dont even wear a prothesis.It's certainly an adjustment but I have never regretted my decision.

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  10. In the beginning, I did feel angry about how I looked. The scar was large, red and ugly. Then the scar became much less prominent and as I healed physically and emotionally, I became more than just accepting of this look.

    I only thing that I don't like, is that due to having a unilateral mastectomy, when I look in the mirror, I still am "off balance" symetrically speaking. I wonder is those with bilaterals find the transition and acceptance of the results easier than those with unilaterals?

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  11. Hi! For the gal that needs size 32 band. Anita makes size 32 band size mastectomy bra. Thats the only brand I could wear because I am very narrow chested. My pics are on breastfree.org and you can see my with the Anita bra. I have since had recon but I was so thankful for the year I had with the Anita bras, they were beautiful and comfortable.

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  12. Hello everyone,
    I had bilateral mastectomies Jan of 2007 and chose not to have reconstruction. To date I'm going with the flat chest look, and I feel fine about it. Sometimes I think people notice but mostly they don't. Everyone is so preocupied with their own lives.
    With each passing day, the flatness is not as important than my continuing good health. I have small limitation with range of motion, but go to the gym and strech as much as I can.
    I think about going for a consultation for forms and bra, but I'm happy without a bra so why go there.
    Happy New Year to all of you

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  13. What a great,thought-provoking entry! True beauty comes from within and the decision to have reconstruction is each woman's personal decision. Thanks for sharing!

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  14. This is a terrific post. When I had a mastectomy in l998, the very first thing I did as soon as my eyes were open was look. I was so relieved, then, as my chest did not look nearly as bad as I thought it would. Since then I did have reconstruction, I live in a very hot climate and am outdoors a lot. Wearing a prosthetic device in the heat was awful.

    But I'm very, very glad to see this discussion. There's far too much emphasis on "boobs." Breasts aren't everything, health is.

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  15. I was lucky enough not to need to make that decision because I was able to have a lumpectomy. However, when I was waiting for test results that would have changed that course of action; I knew I would want reconstruction. I don't think of myself as shallow or self absorbed with looks (not that you made that accusation), but I would want to have had a "breast" there. I've learned so much and learned to appreciate so much from having breast cancer; but I know my own comfort zone. Hopefully, I will never be in the position to have to truly make the decision about reconstruction and I pray one day no woman will!!

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  16. When I was diagnosed with breast cancer, I knew right away that a bilateral mastectomy was the way to go. I had already researched the pros and cons of the various reconstruction options and had pretty much decided to go "flat". There were so many cons, and the only pro in my opinion was that clothing would fit better - it just didn't seem worth it to me. Almost every doctor I saw told me I should really reconsider, maybe because I'm relatively young (34). I've been raised to respect authority figures, so I worried that I was overlooking something - I continued to think and worry and review the pros and cons again and again and again, until I eventually met with a plastic surgeon. He presented his case and I presented mine: basically, I didn't want anything artificial in me and I didn't want to go through more surgery, have a more difficult recovery, or damage healthy body parts in order to get non-functioning breasts. If there was a way to maintain sensation, maybe, but to go through that just to supposedly look better just didn't make sense to me. The plastic surgeon, oddly enough, was the only doctor who seemed to understand me; finally, a professional who didn't make me feel like I was making a mistake! So, on January 29th, 2010, I underwent a bilateral mastectomy with no reconstruction. I had very little pain and was released from the hospital the very next morning - never even needed to take pain meds. Part of me was nervous when the visiting nurse came the next day to remove the bandages and check the incision. I worried that, with that first glimpse, reality would come crashing down and I would regret my decision. But when the gauze came off and I saw my "new" bare chest for the first time, I felt totally at peace. I felt this wave of relief and happiness, and even a bit of pride that, yes, I made the right decision. I know going flat isn't for everyone, but it feels right for me. Maybe someday I'll feel regret, but I don't think that'll happen. I've been out and about and I don't feel self-conscious about being flat at all - I don't even own breastforms. My body has never been perfect, and now it's just "imperfect" in a different way. I can deal with that.

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  17. Hello ladies!
    I found BreastFree 2 years ag when I was diagnosed, and am so glad to see the blog!

    I have had the same experience as you...assumption that I would reconstruct. I am just an old hippie...no silicone for me.

    I decided on a second mastectomy because I was so unbalanced (d-cup on one side). I could not justify a reduction and lift, as it would decrease sensation, and make furthur diagnosis more difficult due to scar tissue, so, off she went. It has been a year since the second, and I have never looked back. To celebrate, I got a tattoo across my scar. Flowers, vines and a caterpillar, cocoon and luna moth. A dragonfly covers my port scar. When I look in the mirror, I see a garden! Breast free enabled me to follow my heart, not what everyone else assumed FOR me. THANK YOU!
    Leslie in Omaha

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  18. Hello ladies,
    I have been facing the decisions that go along with a +BRCa test. I have already had one breast cancer last year and had surgery and radiation. When I finally got my genetic testing done, and saw my surgeon again, he sent me for a reconstuction consult with a plastic surgeon. Because of the radiation, my options are very limited. After hearing the whole procedure and risks explained to me, I kept thinking the entire time, "you've gotta be kidding me?!" I cannot see putting myself through that tedious, long, complicated surgery. So, my journey has continued. I found myself here, on this blog and website of "breastfree" by way of the "network of strength". I am so glad I have!! The morning after my consultation with the plastic surgeon, I woke up thinking/knowing that reconstruction was not for me. I have visited a specialty shop that sells breast forms and they look and feel better than I ever dreamed! It pretty much sealed the deal for me. So....no reconstruction. I have a pre-op consultation appt. with my breast surgeon right after spring break. From there, appt for surgery for bilat. mastectomy. I am more fearful of a cancer reoccurance, than living the rest of my life without breasts! Thank you for this forum....it has been a comfort to me reading the stories from so many strong women--that have gone through/going through this journey and made it to the otherside!

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  19. Peace and good health to all of the women who have posted before me. I am happy that I found this blog. It helps to read other people's stories. Because of cancer, I had a radical mastectomy in December of 2008 followed by chemo and radiation. I decided beforehand that I would not seek reconstruction. After living in my body for a year with only one breast, I decided to have the other breast removed even though it was "healthy".

    None of my doctors (all women) discouraged me from the second mastectomy. I wanted physical symmetry, and wanted to be free of having to replace one missing breast with a prosthesis. I had the second surgery in December 2009. I feel much better. I actually feel more "normal" and I don't look so "freakish" since it's not always obvious that something is missing.

    During the winter, I wear bulkier clothes and have a large collection of scarves I wear like jewelry. They help to fill out the top of my body and I have not worn any bras or prostheses. But now that spring is here, I am trying to find a pair of breast forms that are comfortable. Since I don't need to match an existing breast, I don't need the heavy gel-filled forms. I keep asking for lightweight foam forms, but the medical fitter doesn't seem to have any.

    So I'm on a quest. Maybe someone here can help me.

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  20. Have you looked at the Breast Forms section of BreastFree.org, under "Non-Silicone Breast Forms?" I recommend several forms that have worked well for me and other women. You may have to order these online, since fitters generally focus on the silicone forms and don't push the less-expensive non-silicone options.

    Also, if you check some of the retailers listed in the Helpful Links section of BreastFree.org, you will find a number of foam options for sale. Virtually every breast-form manufacturer makes a foam-form option. It will probably take some trial and error before you figure out what works best for you--we're all different. You may prefer an unweighted foam form or maybe a weighted foam form. If you order online, you can almost always return items that don't work, but check beforehand.

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  21. Barbara - thank you for your reply. I will spend more time looking at the info on your site. I think it's fantastic that you have put yourself out there for this cause/issue. I will be a frequent visitor. I posted as "anonymous" because I have no idea what a URL is or if I have one!

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  22. Thank you for this website. It has a lot of helpful information. In October of 2007 I had a bilateral mastectomy. I had a great doctor (woman) who took the time to describe all of my options. But she also told me my decision of what to do was only for me to decide. I should decide what I would be the most comfortable with in the future. I knew I did not want to keep one breast if it meant worrying each day if or when cancer would show up in that one. And as Lisa said earlier, "I didn't want anything artificial in me and I didn't want to go through more surgery, have a more difficult recovery, or damage healthy body parts in order to get non-functioning breasts." So I do not regret my decision to not have reconstrution.

    However, I do not want to be form free in public. I do go form free in the evening at home; even in front of my husband. But I wear a robe when I am form free so that it is not too obvious. My husband is a wonderful, caring man who would do whatever I asked of him; especially as it pertains to our relationship. For me, the most important part of my life without my breasts is to keep my life as close to what it was before cancer as possible. I found the contact breast forms are the closest thing to real. They don't fall away from your body when you lean forward the way the ones in the bra pockets do. Also to stay as close as possible to life before surgery, I never let anyone, especially my husband see my post-surgery chest. And he has been loving enough to agree to this arrangement. We are still intimate, but only with my shirt and forms on. In many ways we are closer than ever now. No one on any of the blogs I have read, discuss the issue of how they dealt with the intimacy issue in their marriage. So I wanted to write this. Every couple should decide for themselves how to deal with this issue. You should not let anyone else or any other couple tell you that it is wrong not to show your husband your post-mastectomy chest. This is one of the most personal choices you will make as a woman and wife. You have to do what is right for you. If you know your husband as well as I know mine (happily married 40 years), then you will know what is right for your relationship. Don't let anyone make you feel guilty or make you feel like you are not emotionally adjusted if you don't want to show your chest to him.

    I also want to say to every woman out there who does not feel comfortable being form free in public, it is OK to feel that way. Too many websites make is sound like all women who do not have reconstruction should go form free and dare anyone to ask them about it. I don't think I am the only woman who just wants people to treat them like they did before the surgery. We just want to be Mary, Ann, or Betty. We don't want to be Mary, Ann, or Betty who had cancer. We don't want to have people stop talking about something when we come into a room (because they were talking about some woman on TV that showed too much cleavage). And it is OK to want to be the same as before.

    The only issue I have now is finding women's summer tops to wear that are not low-cut. But I am small enough (36B) that I can wear a large boys T-shirt. The necks on them are high enough I don't have to worry about leaning forward. And since I don't swim, I don't have to worry about wearing a swimsuit. Besides wearing boy's T-shirts, you can find several women's tops that are not revealing. There are blouses that button high or even some mock neck short sleeve tops. It just takes a little more time to shop to find those.

    Thanks for letting me share my thoughts. I hope I helped someone.

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  23. Anonymous....thank you for your post....you did help. You verbalized many of the things I have felt. I could not have said it better.

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  24. As a Woman, Mother, Wife, Rn, Friend....I made my decision to have Bilateral Mastectomies with my mind, heart, soul, gut and 6th sense.

    I did not want radiation... for me that purpose is only for Palliation. I question all the side effects and later cancers that pop up.

    I did not want recon. I did not want to endure more and more and more of surgery's and complications for breasts that were not real, would not feel, would never be mine again anyway.

    It was something my Husband and I decided together. It was more important to have me HERE and well. Than forego the nightmare of RECON. Do we have RECON for the World or US.
    Well, the answer was a no brainer.

    I want to continue my Realness in this battle. And no one can take that away.

    It has been one of the hardest things I have ever dealt with on every level. I can't even second guess myself. Even tho my Surgeon felt it was OVERKILL.

    I do miss my bouncing perfect boobies and all the joys they bought me when it was my Turn to have them.

    Wishing you all Strength and Love

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