Breast Cancer Awareness Month 2019 Explores All Reconstruction Options
With roughly 1.38 million new cases of breast cancer reported annually, there has never been a more vital time to educate, inform, and promote research on the life-threatening disease that has claimed 458,000 lives in the past year alone.
During Breast Cancer Awareness Month 2019, thousands of organizations and foundations do just that — bringing visibility to a topic that means so much more than pink shirts and 5Ks.
Among these advocacy groups is AiRS Foundation, a non-profit that works in partnership with U.S. physicians to provide access to education, health resources, and financial assistance for breast cancer patients seeking reconstruction.
It’s federally mandated for insurance companies to provide patients who have undergone mastectomy with breast reconstruction, but not everyone has insurance. For such patients, full coverage opportunities on reconstruction of any kind are slim.
The AiRS Foundation Breast Construction Program allows applicants to apply for a grant to cover medical expenses relating to breast reconstructive surgery. The grants awarded range from “co-pay to the full cost of surgery, hospitalization, and other related medical expenses.”
The financial aid has helped many, but perhaps most integral to AiRS Foundation advocacy work is the emphasis they place on informing patients. Whether assisted by insurance or not, lack of guidance before and after mastectomy can be detrimental. As noted by breastcancer.org, studies from the American Society of Plastic Surgeons have found that more than 70% of women aren’t fully informed about their reconstructive options before mastectomy.
When a patient isn’t fully informed on the risks of implants and the emotional or physical changes they may experience after reconstruction, decision-making becomes a gamble. Founded by Janet Denlinger and Morgan Hare, AiRS aims to address this concern and fill the gap in patient education and care options.
So, what exactly are the options for a patient following mastectomy?
On Going Flat
The two most common techniques for reconstructive breast surgery are implant reconstruction and autologous or “flap” reconstruction, which incorporates tissue from another area of the body. This October 7th, however, patient advocates stood together in support of a third option: going flat.
Christy Avila, teacher at San Jose City College and founder of the advocacy group Fierce, Flat, Forward, says she was aware of the “flat option” from the get-go as she had an aunt who chose not to reconstruct following mastectomy. Avila, however, wasn’t properly informed about the risks of breast implants and elected for reconstruction following her own surgery. As a result, she never asked her doctor about the flat option and was never provided information on it.
In general, Avila says, “it is extremely difficult for women to get support for “going flat.” Most women are not presented with it as an option at all.” She added, “women are openly dissuaded from going flat and are often even sent for psychiatric evaluations when they make the request to go flat before the doctor will agree to their surgery.”
Defense from the medical professionals has included warnings of “low self-esteem,” “bad posture” and being “too young to not have breasts.” Since plastic surgeons are never required to cover the flat option in their consultations, however, most patients of mastectomy never have the chance to engage in a dialogue on it.
“Many women believe they have to go through reconstruction and that is why advocates are working to “put flat on the menu” (a flat-community phrase)” says Avila. And that’s exactly what they’re doing.
They’re the women in the blue shirts, stomping out the stigmas associated with going flat.
The flat advocates, self-termed “The Flatties,” bring more to the breast cancer community than information. They also provide representation. Standing proud as flat women, they de-stigmatize views in both the plastic surgery community and society at large about being flat-chested.
Allyn Rose, a 31-year-old spokesperson for AiRS, has found that failure of representation in media creates a false image of what it means to be beautiful. As the first model with a mastectomy to be in Sports Illustrated, Rose was never before able to “envision flipping through the pages [of a magazine] and see a woman with a mastectomy as a standard of beauty.” She noted, “that’s a problem that all types of women are facing every day.”
After being included in the magazine issue, Rose realized, “I didn’t have to choose between my health and my femininity or the opportunity for someone like me to be seen as powerful, resilient and beautiful.” As a patient-first organization, AiRS offers those affected a path to finding the right reconstructive choice for their body and lifestyle — whether that means going flat, autologous reconstruction, or implants.
“Being a spokeswoman means more than being a mouthpiece for an organization, it means being an educated and compassionate resource,” said Rose, who was so moved by the issue that she decided to create The Previvor. With this educational platform, which launched this month, women can learn about their options before, during, and after mastectomy. “The more we encourage patients to be their own best advocates,” she says, “the better their opportunities for success.”
How to Get Involved
Tamara Sieger, a breast cancer survivor and the Director of the AiRS Advocacy Program, finds that people become advocates as a way to give back. Volunteers have flexibility since they can work from home and “offer support primarily via phone, email, and text.” Sieger believes having an advocate is one of the best forms of assistance during what can be a confusing and isolating time.
Those interested in becoming an advocate for the AiRS Foundation can fill out an application, begin training, and connect with patients. People who have experienced breast cancer or breast reconstructive surgeries are preferred but anyone with a compassionate attitude is welcome to apply and volunteer.
By S. Nicole Lane
S. Nicole Lane is a freelance journalist based in the southside of Chicago where she covers women’s health, the LGBTQ voice, arts, and entertainment. Her byline can be found in Playboy, Rewire News, i-D, Broadly and various other corners of the internet. She is also a visual artist who works with small-scale sculptures.
Originally published OCTOBER 16, 2019