BRA Day, yay!Posted: October 18, 2012 Filed under: breast cancer, cancer fatigue | Tags: BRA Day, breast implants after cancer, breast reconstruction surgery, cancer sucks, DIEP reconstruction, the Big Dig, Women's Health and Cancer Rights Act of 1998 12 Comments
Yesterday was BRA Day. No, not wear a bra or burn a bra day but Breast Reconstruction Awareness Day. Yes, more awareness. Yay.
I didn’t write about this yesterday so I’m a day late and a dollar short. A maybe a cup size short. Or maybe just short.
I was hoping that by waiting a day, I would have something nice to write about BRA Day. I was hoping that by waiting a day, I’d be able to focus on the potential for positive transformation via reconstruction, instead of thinking ugly thoughts about how wrecked most women feel after breast cancer, whether from a lumpectomy, a single mastectomy, or a bilateral mastectomy.
My feelings about BRA Day are mixed. Rather like my cup size. Initially, I braced myself for more “awareness.” It’s no secret that I’m not a fan of all the breast cancer “awareness” out there (click here or here or here or here for the latest rants), and the month of October wears me out. Big time. However, awareness about reconstruction options is a good thing. There will be no ranting about awareness for reconstruction options. That said, do we need to declare a national BRA Day to get the reconstruction information in the hands of those who need it? Why isn’t it standard protocol for a breast surgeon to educate patients on reconstruction? Why do we need an entire day, with a national spokesperson (Jewel, the singer, who has written a special song especially for reconstruction patients)? Why must breast cancer patients/warriors/survivors be accosted every damn day in the month of October by yet another reminder of cancer?
I’m very fortunate to live in a city in which I have access to crazy-good surgeons and top-shelf medical institutions. My fabulous breast surgeon made the effort to inform me of my reconstruction options, so I knew what was on the menu. She works closely with a couple of plastic surgeons, and she makes it easy for her patients to follow the trajectory from mastectomy to reconstruction. Because I have type-A tendencies, I explored the reconstruction options, asked countless questions, and sought out information, no matter how gory. Watching youtube videos of actual surgeries, albeit with one eye shut sometimes, is de rigueur for me. I know this is not the case for all women with breast cancer. I am counting my blessings here, if one can use the word “blessings” in the context of cancer. Those of you who’ve been there know what I mean (blessing: we caught it early! reality: there was something to catch; blessing: your cancer is located in a body part that’s easily removed! reality: there’s cancer that needs to be removed, and your body will never be the same; blessing: you’re young and healthy! reality: I had both breasts cut off at the age of 40 while tending to an 8-year-old and a 10-year old; blessing: you’re so strong and able to handle this challenge! reality: the rigors of cancer never let up, no matter how strong one is; blessing: your cancer is so treatable! reality: regardless of treatability, cancer is cancer and it sucks).
But I digress.
Before I go any further, let’s be clear about one thing: while I’m not satisfied with the results of my reconstruction, my surgeons have done amazing work, and I wouldn’t have chosen a different option. Ok, so I didn’t have any other options, because I had a barely-contained, rare infection and needed to shore up the sunken, excavated chest wall with some healthy, vascularized tissue, aka The Big Dig. I showed up with a hot mess of a post-mastectomy chest wall that went from bad to worse to even worse to holy hell, can it get any worse? and my docs transformed it to pretty damn good, considering from where we started.
Before the infection ruined the post-mastectomy party, I was planning on the “standard” reconstruction, which involves having tissue expanders put in during the mastectomy surgery, then filling the expanders with saline every week or so to stretch the skin, then replacing the expanders with implants once the skin is stretched. The skin must be stretched post-mastectomy, unlike in a breast augmentation, because the skin, fat and tissue have been scooped out by the mastectomy in an effort to remove all the cancer. It’s not the same as plopping a set of implants in a regular chest. I read up on the other forms of reconstruction but didn’t study them intently because the expanders-to-implant route seemed like a done deal. Once the infection entered the scene, however, I learned a lot about the other options.
Apparently I’m in the minority of women regarding reconstruction options. According to the BRA Day website, not every woman has a stellar breast surgeon who lays out all the deets, good, bad, and ugly, and 70 percent of women undergoing breast cancer surgery are not informed of their reconstruction options, and only 23 percent of women know that there’s a wide range of reconstruction options. Scarier still: only 22 percent of women are briefed on what to expect post-reconstruction. What??? I spent a lot of time looking at before-and-after photos of the women my surgeons had operated on, at my surgeons’ insistence. I consented to become one of those before-and-after photos and am happy to know that other women can see those photos so they know what to expect.
The BRA Day website gives an overview of the different types of reconstruction, and presents the information in little sips instead of overwhelming gulps. There’s even a handy chart for comparing the pros and cons of different types of reconstruction. This could be very helpful when trying to process heaps of information, most of if scary and difficult to hear. I’ll give the BRA Day website credit for laying out the information in an easy-to-take format.
One thing that’s missing from the website, though, is information on The Women’s Health and Cancer Rights Act (WHCRA). There’s a reference to the cost of reconstruction on the BRA Day website, but it doesn’t mention that there’s a federal law protecting women from being denied coverage by their insurance companies. The law has been on the books since October 1998, and says that group insurance plans that cover mastectomies must also cover reconstruction.
Now, here’s what I really hate about BRA Day (you knew this was coming, right?). The name. Like so much about breast cancer, and especially breast cancer “awereness,” BRA Day tries to direct the focus away from the disease and back to the breasts. It’s sexy! It’s glamorous! It’s pink and pretty! It’s all about the boobies! Sheesh. Here we go again.
I’m not crazy about the fact that BRA Day is sponsored by plastic surgeons. I happen to love and admire my plastic surgeons, and I am ever so grateful for the work they do for women who’ve been royally screwed by breast cancer. But the fact that the American Society of Plastic Surgeons and The Plastic Surgery Foundation sponsor BRA Day makes me a wee bit skeptical.
And finally, I’m bugged by the fact that BRA Day, a worthy and necessary happening, can so easily be conflated with No Bra Day, which is “celebrated” either July 9th or October 13th — or maybe both — and is neither worthy nor necessary but instead bombastic in its emphasis of breasts.
Maybe I’m just worn out by Pinktober, and maybe I’m run down by the realities of the cancer “journey,” and maybe I’m disappointed that no matter how good reconstruction is, it can never replace what’s been stolen by cancer.
Maybe nothing! I’m worn out by pinktober and I never had breasts or cancer. I continue to feel as though I owe women an apology on behalf of my sex and my society. Could we ever get to where reconstruction was unnecessary? Where we actually celebrate the scars as symbol of victory in battle, a sort of medal of honor? Not saying one should not go through reconstruction, that’s a personal decision, but wishing it did not come across as something women “need” to be whole/normal again. Could we ever see women with breasts look admiringly at the unreconstructed chest of a survivor?
The only thing I’ve seen that even hints at mastectomy scars as symbols of victory is The SCAR Project, and even that is deemed too scary to be on Facebook (Zuckerman, you are a coward in this regard). I can’t imagine women with breasts looking at an unreconstructed woman admiringly, but as John Lennon said, “Imagine there’s a heaven.”
No, you are dead on. I heard some celebrity I can’t even remember on the view talking about how she is the spokesperson, and she was vacuous…like it wasn’t well defined. I had a partial mastectomy, not really a lumpectomy but something in between. I have been told insurance will not cover reconstruction as it was not a full mastectomy. And still, I get the willies about messing with it anyway, as in the devil you know…now I digress.
I dislike the name too, I dunno, I just dislike everything about pinktober…I’m with you….worn out, tired of this horrendous thing I went through being made all cute and fun.
There’s nothing cute and nothing fun about what we went through. Nor is it cute or fun to think about recurrence. 11 more days til this wretched month is over…counting down!
Nancy, It sounds like you and I are on the same page once again. I posted on this yesterday. So far, I’ve just had a couple of less than supportive comments. I agree, it’s the job of doctors to inform patients. I agree the BRA Day acronym is ridiculous. I agree the fact that plastic surgeons are behind all this is problematic. Mostly I hate the fact too many women will be excluded. When the plastic surgeons all line up to take care of the uninsured women, I’ll reconsider. Until then, I’m out. Thanks for writing about this.
Hi Nancy! Anytime we’re on the same page is a good time for me! I agree about the plight of uninsured women and BRA Day.
I’m reading this sitting in Dr. S’s office–was just talking to a woman who had saline implants 8 years ago, at age 45, one ruptured and she just had new silicone ones put in. She did the back flap. If she has to do it again in a few years she says she will be flat, can’t stand this again. (She did tell me some of the nerve pain goes away and tattooing hurt more than she was told, but she liked her results). We were talking about all the stuff the docs don’t tell you. I shoulda looked at more videos on youtube.
Hindsight, Marcie. Message me with the details of your visit with Dr S.
I did a guest post at Nancy’s Point on October 1 on why I chose not be to reconstructed, if you are interested.
I’m going to read it, Lois; I always enjoy your perspective. Thanks!
Like Lois,I also chose not to be reconstructed. This whole BRA day business is raising a brouhaha. And I’m thankful it’s controversial, and not another one of those commemorative events that elicit comments like, “Isn’t that nice what they are doing for breast cancer these days?” x
If I hadn’t gotten the infection, I don’t think I would have had reconstruction. I was just fine with a flat chest (and with not having to wear a bra!). It makes me so sad to know that some women think they’re not whole without breasts.