Search This Blog

Saturday, December 11, 2010

Missing MY missing breasts and why I chose not to reconstruct

On Monday, December 13, it will be 8 weeks since I had my bi-lateral (double) mastectomy surgery and 4 weeks since the last drain was removed from my right side. It will also be 12 weeks since my last round of chemo and approximately 6 months since I was originally diagnosed with breast cancer in April 2010.

How am I doing?

This is the question I am most asked from friends and colleagues and acquaintances when I see them after a few days/weeks/months. It was the #1 question I got when I went to my department's holiday party last week. And my answer, genuine and consistent, is that I'm good, or to be grammatically correct, I'm well. I'm doing just fine. I'm still a bit tight in my chest--yoga and the physical therapy exercises definitely help--and I'm definitely still tired/fatigued as a result of the healing that my body is still undergoing. Case in point: after being on my feet for 3 hours on Wed. at the holiday party (and I attended the IAH party before the English dept party, so it was really TWO holiday parties I went to on Wednesday) I spent the next 2 days either in-bed or on the couch because I WAS SO TIRED I COULD NOT MOVE--QUITE LITERALLY, I WAS CRASHED OUT AND CLEARLY MY BODY WAS SAYING STOP, YOU NEED TO REST.

But really, perhaps what people want to know is

"What is it like not to have breasts? How are you coping psychologically and emotionally?"

So this is the post that talks about missing my missing breasts, and why I chose NOT to do reconstructive surgery.

Because I do miss my breasts. Or let me put it this way, I miss MY breasts. It's not just the abstract concept of having a breast or the gendered nature of feeling feminine by being a woman with breasts, or even noticing that my clothes don't quite fit the same way (which is definitely true) but first and foremost, I miss MY breasts--the breasts I was born with, that grew with me as I grew, that I lived with throughout my teen years and learned to take pleasure in, sexually, as I grew into my adult sexuality.

And that last point--what my breasts mean to me sexually--is why I did not choose reconstruction.

The truth is, prior to my cancer diagnosis, I didn't think a lot about my breasts. I liked them because they were part of my body and, in general, they've worked well for me. They weren't so big that they became cumbersome to me, and they weren't so small that I couldn't fill out a dress nicely. They were, in the words of that immortal children's tale, "just right." But I have to say, that I found my nipples, outside of sexual pleasure, a bit inconvenient. In U.S. society we frown on women's nipples (maybe men's nipples too, but it's more acceptable to see them). Women need to cover up their nipples--anyone who has ever seen the machinations to which starlets will go to reveal all parts of their boob except for their nipple will understand what I mean. It would be considered unprofessional for a woman at work to wear a blouse and NOT wear a bra, especially if it was a white shirt or a tight blouse. And I always found wearing bras to be inconvenient for the most part. My way out, during winter months, was the camisole top.

I mention all of the above to give you a picture of how I pretty much treated, aesthetically, my breasts. How I feel about my breasts in terms of my sexual life is a different matter. And I know that saying all of this may be odd or make others feel uncomfortable, but the bottom line for me is that my breasts, my nipples, were most important to my sexual identity and sexual life.

So when I learned that breast reconstruction would allow me to aesthetically look the way I used to look but would not let me FEEL the way I used to feel, that pretty much sealed the deal for me. Because as I noted above, what I want are MY breasts--I want to feel MY breasts--I don't want to just look down and see that I have breasts or be reassured that my clothes will fit exactly as they had before. First and foremost, reconstruction would feel like a cosmetic choice for me; it would hide the loss of my breasts but would not speak to my emotional loss at their absence.

Let me just pause here and say that I know that my view and perspective is a pretty minority view and perspective. Anecdotally, in a very small sample of women who have had double-mastectomy surgery (like about a dozen) only one woman, my maternal aunt, elected not to have reconstructive surgery--and most of my female friends and family told me that if they were in my position, they would definitely want reconstructive surgery--that having breasts are VERY IMPORTANT to their sense of identity--to their sense of normalcy--to their sense of just being women.

I do understand this. Completely. I judge no one for their choice in wanting reconstructive surgery. Especially the desire to feel normal again--to feel like you are yourself again. To not want to worry about how your clothes feel or about looking so different--of feeling self conscious while undressing in a locker room or dressing room or even in the privacy of your bedroom and bathroom. I understand the desire to want to feel whole again--and especially with what plastic surgeons are doing nowadays with nipple tattoos--and the improvements in silicon inserts--breast implants and reconstructive surgery gives women who have had mastectomies breasts that are just like their former ones or ideal breasts that they always wanted.

And while, for the most part, my family and friends have been very respectful and supportive of my choices, whether they personally would choose the same route or not, what I've been surprised at is the reaction and assumptions from acquaintances and virtual strangers--that everyone assumes that I will change my mind--that the only reason I'm not choosing reconstruction is that all of this is too overwhelming for me and I will change my mind when more time has passed and I have healed. There have been nurses who have assumed I will be doing reconstruction while going through chemotherapy. Strangers have told Matthew that I may say I don't want reconstructive surgery but as a woman I will, of course, change my mind and get reconstructive surgery, I just simply don't know my own mind right now. Friends of friends have told me that I can now have larger breasts or the ideal breasts I've always wanted. Even extended family tell me not to be stubborn and to be open to getting breast reconstruction in the future, assuming that due to my contrary nature that I will secretly want reconstructive surgery a year from now but will be too proud to get it because I've been so vehement about not wanting reconstructive surgery.

Is there a possibility I will change my mind?

Yes, of course. I think I'd seem too truculent at this point if I say no.

But if I were a betting woman, I would not count on me changing my mind. There has never been a point, prior to my cancer diagnosis, during my decision making about whether to do a lumpectomy of both breasts or the bi-lateral mastectomy, during chemotherapy, and leading up to my surgery when I ever thought that I wanted to do reconstruction. There is nothing about reconstruction that is appealing to me. It is not a judgment on anyone's decision to do reconstruction--it is my own level of comfort, my own relationship to my breasts, my own sense of what I miss about my missing breasts, that leads me to this certainty.

I miss my missing breasts. I miss having part of the body that I was born with. I miss the absence of my breasts. But having new breasts--ones that aren't part of me, that don't give me any sensation or pleasure--would not take away from my sadness over missing my breasts. In fact, what I feel in my gut is that choosing reconstruction, for me, would be very wrong. It would feel wrong--it would feel false--it would not make me feel whole. On the contrary, it would remind me more starkly than the scars I currently carry with me, of what I have lost.

And perhaps, most of all, what I realized before my surgery, in looking at the images I was lucky enough to find on-line of a woman who also chose not to do reconstruction (click here to see her Flickr stream), was that I would be OK. I would be OK without breasts. I would learn to live without my breasts, and it will be weird (it is weird) but at the end of the day, it will also be OK--and that most importantly of all, my decision to not do reconstruction is the right decision for me.

[Addendum: I should say that my decision was reinforced by a pamphlet that my wonderful surgeon, Keith Amos, gave to me. It is distributed by a non-profit organization here in Raleigh, Myself: Together Again (click here on the link). It's a wonderful booklet that, in image and text, chronicles a young woman's bi-lateral mastectomy surgery and reconstructive surgery. It shows the scars, her port, the drains, the plastic surgeon's marks, the expanders, and finally what she looks like with her nipple tattoos and the silicon implants in. For anyone considering either breast augmentation or breast reconstruction, this is an important booklet to look at. I was glad to page through it, because my visceral reaction on seeing it was reassurance that I had made the right decision--reconstruction is not for me]


  1. Bravo!!! I found your blog when searching for other women that CHOSE not to be reconstructed. I am 9 months post bilateral mastectomy and have no plans to have reconstruction done. I also do not wear prosthetics. I do plan on having a full chest tattoo done when my scars have faded more and I find the right artist. No body work, just a paint job. Oh, and by the way, I hate those effing pink ribbons. Bravo again Jennifer!

  2. I am a 3 year breast cancer survivor. I went from diagnosis day to surgery in less than 4 weeks.I felt rushed in my surgery and reconstruction decision but ended up having a single mastectomy and implant reconstruction. I was 44 when I was diagnosed. I love how people would say, " well of course you want reconstruction because you are still young." WTF is THAT suppose to mean? Honestly! Is it because you think I am still sexually active and need to have this reconstructed breast to "perform"? That having this bump on my chest will make me feel more appealing to my husband? Really? Clearly these people have no concept that reconstruction is NOT breast augmentation. My nipple is gone. I have no feeling on that side of my body, sternum to under arm and ribs to collar bone. I do not allow my husband to touch that part of me because I can't feel it and quite frankly it sickens me to think he would find ANY pleasure in something that has caused me such emotional pain. He doesn't understand but he complies. I still don't want sex. I avoid it, really. It is just a sad reminder of what I have lost. A friend asked me recently if I am still glad that I did the reconstruction and I answered yes. It does help me in getting dressed. I can wear virtually anything, although I did get weird looks one time I the gym with a work out bra on and had only one erect nipple. But it is a bit like having an illegal alien living here. She looks real to the outside world but I know her true "status". She is an unwelcome intruder on my body, passing as the real thing, but never will be. Three years ago my plastic surgeon said to me that he would do whatever I him to but that he felt women underestimated the loss of a breast and so he would not recommend removal of my healthy breast at that time. I am glad that I did not have that breast removed. Sex at 45 after 25 years of marriage And 4 kids is seldom, at best, but would be NEVER if BOTH my "on" buttons were gone. That being said, I live with constant fear that I will develop cancer I that breast and since my cycles have returned (which they did 1year after chemo ended) and because I could not tolerate Tamoxifen, my risk of that happening is pretty strong. I applaud your strength and your honesty. Very few survivors seem wiling to discuss this numbness that is a very real reminder that reconstructed boobs are FaKE and are not breasts at all. Will you change your mind? Will I? Maybe. Will I embrace this new body I have one day and feel comfortable in this fake skin? I can't say. I am doing the best I can with what was thrown at me. Nobody can say what they would do until they've been there and even those of us there can't say how we'll feel tomorrow! We are entitled to our choices. We honor other choices as valid and real. Honesty. Transparency. Raw truth...we need more of it so that those who have not gone through this will have a greater appreciation for what breast cancer does to women, to relationships, to sex lives, and maybe think again about those stupid pretty pink ribbons. They represent nothing true about this disease.

  3. To the two "Anonymous" commenters,
    Thanks so much for sharing parts of your own stories on my blog, esp. related to this post. It is such a deeply personal issue, that none-the-less is something that is what every woman who undergoes mastectomy has to contend with: to reconstruct or not--and to deal with the emotional (and practical) repercussions of this decision. As well as what it means to be living with a breast cancer diagnosis.

    Thanks for reading and most of all thanks for sharing!

  4. I'm 33years old, have struggled with treatments for ovarian cancer with mets for almost 5 years, and am having a double mastectomy next month. I have extremely painful lumps and tenderness from fibrocystic breast tissue, and this leads to a mammogram, breast MRI, and biopsy almost yearly. It's physically and psychologically stressful and I don't want to go through it any more. I'm also BRCA positive. I will not be having reconstruction. I don't want the additional surgeries and foreign bodies in my chest. I don't want to play society's game that women are only sexy when they have breasts (and nipples). And I'm okay with it. I wish manufacturers would make sexier bras that hold breast prosthesis, but that's a whole other blog/comment. Thank you for sharing your thoughts. It has solidified my decision not to reconstruct.

  5. Thank you Jennifer and the others who wrote for opening the door to a discussion of why some one might decide against reconstruction. I have survived 36 years and been disease free for 32. I have had two modified radical mastectomies. For a number of reasons I have not had reconstruction. Although I did have a consultation about 10 years after my second mastectomy, I decided against that step when I found out what the operations would entail. It would have been a" bigger" surgery than the mastectomies. (I asked the plastic surgeon which was worse) Going through all that, risking infection and possible failure just to "look normal" did not make sense. Also I knew from living with my body for 10 years that reconstruction would not restore sensation. When I found out there would be a significant period when I could not use my arms, that clinched the decision .As a single woman I could not afford to be incapacitated for that long.
    Also, when I had breast cancer, surgeons were still doing the Halsted radical mastectomy. That procedure not only removed the breast, it also removed all the chest muscles on that side. Fortunately I had an enlightened surgeon who did not do Halsteds except in extreme cases. When I got a hospital form asking me if I agreed to a Halsted, I refused to sign because my surgeon had told me I was having a modified radical. That was all I was willing to sign for.The Halsted mastectomy some times crippled women by limiting the use of their arms. If I would refuse a Halsted when my life was at stake, why would I risk my arms just to "look good"

    Thanks again for your posts

  6. I would like to thank all for your comments. I had a bilateral mastectomy in November, 2013, have finished chemo and have only 22 radiations to left to go. When I was first diagnosed, there was "no question" that I would have reconstruction. Through the past months, with an understanding of what reconstruction means, I no longer want it. It is not the right choice for me to have parts in my body that I cannot feel. I am still struggling with the lack of feeling in my right art from the lumpectomy. I informed my oncologist on my last visit that I had decided against reconstruction. She was shocked and said "you deserve to be don't have to look like this". Obviously I was out of sorts for a few days after that conversation, but now know more than ever that no reconstruction is the right choice for me. I just want to thank you for your comments helping me realize that my decision is the right decision for me.

  7. Lisa--I really think it's such a personal choice--reconstruction--and I'm so sorry that your oncologist made the comment about you "deserving to be pretty" (sigh). I guess its all well intentioned, but people don't realize that the things they say can really be insensitive. I hope you continue to do well with the radiation -- and I know that how "pretty" you are isn't about the externals but the sense of self confidence you have--and you sound like a confident person!

  8. Im 34one year post bi lateral masectomies and thank god someone else feels the same as me i was a 36j prior to surgery now im a differant person i carry the scars but i know longer feel feminine the loss of hair and being brac-1 im waiting for a hysterectomy as my chance of ovarian cancer sky rocketed soi feel somewhat confused as to what im going to retain as part of my femininity i feel so angry if it werent for my children aged 4 and 5 id of probably gave up,ultimately its the children that is all i possess that reminds me im a woman and a cling to them to get strength to continue with the cards i were dealt,im just lucky god blessed me with them the sweet before a very bitter sour x

  9. I am facing the recon decision and my gut is to NOT do it. There are too many variables and already an invasive thing is happening to me, thanks for your perspective.