When I was facing a bilateral mastectomy, I had a wonderful role model—my mother-in-law, Reggie, who lived without breasts (and without reconstruction) for over fifty years. Reggie was a striking woman with dark wavy hair and flawless skin. She wore loose, flowing apparel, often accented by colorful scarves. The loose clothes were necessitated by severe lymphedema that developed in one arm after surgery and radiation, but they also seemed to express her free spirit and joie de vivre.
When Reggie had her first mastectomy at age 31, reconstruction wasn't available. Even after her second mastectomy, fifteen years later, reconstruction with implants was still in its infancy. In any event, given her prior radiation, Reggie wasn't a candidate for implant reconstruction. So, she was breast-free by necessity, not by choice.
Before her diagnosis, Reggie dressed very conventionally, favoring a tailored look. After her mastectomy and particularly after the development of lymphedema, Reggie felt she had to find a style that would suit her physical situation. She no longer could conform to the then-current fashions, with their tight-fitting blouses, sweaters, and jackets.
The process of creating her own style of dress had a remarkable effect on Reggie—she re-invented herself. She became freer, not just in dress but in behavior. She went back to school, became a psychologist, and pioneered the first support groups for post-mastectomy women. Eventually, she decided she didn't want the encumbrance of breast forms and went flat most of the time. No one seemed to notice, or if they did, her choice only made people admire her more.
When I was deciding whether or not to have reconstruction, the way Reggie lived her life breast-free profoundly affected my decision not to reconstruct. Because of her example, I knew my life could be full and wonderful whether or not I had breasts. After my father-in-law died, when Reggie was 64, she subsequently met and married a terrific guy, so I also knew that men could still be attracted to women who didn't have breasts. And, having followed Reggie's work with women who had undergone mastectomies, I hoped that I too might be able to help women adjust to living their lives post-mastectomy.
Though Reggie was initially surprised by my decision not to have reconstruction, once she realized that I regarded it as a positive choice, she fully supported me. Because of the example Reggie set, my husband and grown sons never regarded my mastectomy as disfiguring. In fact, my husband urged me not to have reconstruction.
Reggie passed away last September at age 82, not from breast cancer. I miss her and wish I could show her this first post on the BreastFree Blog. I'm sure she would be enthusiastic about it, as she was about everything in life.
I welcome your comments and stories about people who made a difference in your decision to live breast-free.
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12 comments:
What a lovely tribute to a lovely woman! You have already offered a great deal of support to people facing the myriad decisions breast cancer entails. I look forward to following your blog! Dawn
What a beautiful and inspirational story!
~elaine~
(starzhere on BC.org)
For complicated reasons, I had to wait six months between my decision to have a bilateral mastectomy and the actual surgery date. I'm a journalist, so I'm used to tracking down experts and ordinary people with firsthand experience. And it was easy to find people to tell me about reconstruction. Plastic surgeons provided consultations, albums of their work, even movies about the various procedures. I also had friends who had had reconstruction, and I listened to their accounts (one showed me the impressive result). But I couldn't find any experts or ordinary women who could tell me what it was like to take the route I was considering—no breasts at all, inside or out. So eventually I just had to wing it. I'm happy with my decision, though it's one that presents daily wardrobe dilemmas since most clothing in America today is designed to highlight an ample bosom. I wish there was a clothing sector--like the plastic surgery or prosthesis industries--catering to my particular clothing needs. But aside from some fairly expensive boutique options, I've been left to my own devices. Not a tragedy, certainly, but something I'm forced to think about every day two years out from the surgery.
I love the fact that you are giving permission to others to be more "transparent." Not just about being "breastfree" but in so many other occasions when they "take the road not taken. Now they will feel free to tell others about their path. That's the connection we all have to your endeavor. Thanks to you, some day Google will realize that breastfree is a word.
Thanks Barbara for this blog and your website. It's been a VERY helpful resource for me--I am deciding to go the breast free route after my upcoming double mastectomy.
just found your blog, I had a double mastectomy, thanks
Thanks for this site. I came here before my double mastectomy which was 5/1/09. The information aided in my choice to have no reconstruction. I am so grateful to the brave women who posted their photographs here. Just having seen those made it easier when I first looked. I make the decision to look down and see cancer gone..Yesterday when doctor called to say path report showed more cancer in right, but that she got it all; I ran outside and danced in my yard...I win Cancer lost
I've been living one-breasted since Feb. 2007. I still may have reconstruction, but one-breastedness has become political for me. In her Cancer Journals, Audre Lorde compares survivors to Moshe Dayan. No one tells him to put in a glass eye instead of an eyepatch, she writes. (Back in 1980.) Lorde writes: "Prosthesis offers the empty comfort of 'Nobody will know the difference.' But it is that very difference which I wish to affirm, because I have lived it, and survived it, and wish to share that strength with other women...women with mastectomies must be visible to each other."
Barbara,
You pointed me toward this blog when I wrote into one of the discussion boards on breastcancer.org. Thank you so much for doing so--Reggie's story and your own are so inspiring. I know in my heart that reconstruction would for me make an unreal situation even more so, and your website brings that instinct even more into focus. I'll continue to read your blog for inspiration, information and support. lynnmarie
Thanks so much I am 9 months out of a double mastectomy and did not do reconstrution after reading all the different input of others. It was and is still very informative and I am ever so grateful to all of you. I am having some lymphodemia in my arm, back and chest for which I just picked up a compression bra that I think is going to make my life more comfortable. I wish there were a support group in my area (breastfree) so we could get together every once in a while it would be fun.
you still have readers..... I am likely going to get a bilateral mastectomy just for DCIS, due to young age etc. but can't fathom having fake breasts. Yet women with implants often appear like "nothing happened" at all, which can seem to benefit them. I just don't feel confident in the possible results, especially if they are numb. My mom went that route and hugging her is like confronting a hard breast wall. I don't like it at all. So I will go flat. Yet I'm quite sad over my incredible bod being altered for life. I don't want to have to change. It's hard to look in the mirror and imagine the future. Trying to focus on how nice it will feel to have a flat chest, and other things I can do to improve my physical form. The internet is drowning way too much in reconstruction videos and pictures. I feel like a total minority. I wish I had a positive example to follow or have inspire me.
I am sorry you have to go through this at a young age. While it's true that reconstruction pictures far exceed examples of women without reconstruction, there's definitely been a shift during the past few years, with many more younger women opting not to have reconstruction. And now there are groups like Flat and Fabulous, as well as articles in newspapers and magazines highlighting the non-reconstruction option. One just came out this week in the Philadelphia Inquirer: http://www.philly.com/philly/health/in-a-breast-obsessed-world-more-women-go-flat-after-mastectomy-20171004.html. And I was recently interviewed for an upcoming article in CURE Magazine. Best of luck and I hope you feel you still look incredible once you've had your surgery.
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