Breastless in America: Survivor helps women find hope, healing and closure after breast cancer
Alisa Savoretti never imagined returning to the Las Vegas stage without her breast. The former showgirl retired her dancing shoes to build an e-commerce business after years of touring the world. She poured her time, energy and money into launching a successful online furniture store, but her plans took an unexpected turn in 2001 when she felt a lump in her right breast.
"I didn't think for one second that it was breast cancer, so I didn't do anything about it at first," she recalls. "I was busy and focused on getting my business off the ground. I didn't have insurance as a new entrepreneur, so I went to the health department a few months later to get it checked out and had a biopsy. It was a shocking blow."
At age 38, Alisa was an uninsured cancer patient with limited funds, massive credit card debt and a denied Medicaid application. Although she found a local social services agency to cover her single mastectomy and eight rounds of chemotherapy in 2002, her search for breast reconstruction funding was unsuccessful. In need of steady employment and insurance, she accepted a dance gig at the Riviera Hotel five months after her mastectomy and final chemotherapy treatment. Alisa performed in two shows a night, six nights a week, padding her showgirl costume before every performance to camouflage her missing breast.
Surviving breast cancer was a huge feat, but losing her breast took a toll on her confidence and well-being.
"I had traveled the world as a professional dancer and made a living with my body, and now I felt disfigured and deformed," she says. "The girls backstage could see I had a line where I was supposed to have a breast. It was horrible. All I needed was the last step in my treatment (reconstruction). I called local and national institutions, but no one had a nickel to help me."
Alisa's struggle to find funding sparked an idea to start a nonprofit for uninsured women who fall through the cracks of healthcare. To raise awareness, she marketed herself as "The Lopsided Showgirl," attracting local media attention to her plight. She also shared her predicament with members of the National Association of Women Business Owners, and with the organization's support and assistance, she formed My Hope Chest in 2003.
"I knew I couldn't be the only woman this was happening to," she says. "I couldn't believe there wasn't a charity in our country to help uninsured women. Being forced to live without my breast because I lacked the means was horrible. I was depressed, but I believed this was my calling, and I was on a crusade to make a change."
Hope and healing
Alisa lived without her breast for nearly three years before she finally secured a health-insurance plan to cover her reconstruction in 2005.
"I was restored as a woman in body, mind and spirit," she says. "It wasn't until I looked in the mirror and saw two breasts, nipples and areolas that I felt like myself and that my cancer journey was complete."
Alisa, now 57, estimates that more than 22,000 uninsured women per year lose one or both breasts while battling cancer based on a study her charity conducted in 2010. As the only national organization focused on reconstructive surgery for uninsured and underinsured breast cancer survivors, My Hope Chest's mission is to provide hope, healing and transformation for survivors everywhere.
"Women feel deformed after losing their breast to cancer, and they may think they have to live that way, but they don't," she says. "Part of our mission is to 'create butterflies' and transform lives through breast reconstruction and closure from cancer treatment. We celebrate the transformation and metamorphosis that our clients go through."
My Hope Chest helps up to 10 women each year attain their "butterfly" transformation surgeries. More than 100 survivors are on the growing waitlist from around the country. Some women remain on the waitlist for years before My Hope Chest receives funding or surgeon partners to help with their reconstruction.
"We don't give up, and we follow-up with them as soon as we raise more funds," she says, noting their referrals often come from large pink ribbon breast cancer organizations that do not provide aid or fund the surgery. "Many women who reach out have lived without one or both breasts for years – it's horrible and unacceptable. We don't promise if or when we can help, only that we will do our very best. Reconstruction is the glimmer of hope for them to find closure from their disease."
Her nonprofit relies heavily on individual donations, corporate sponsorships and partnerships with board-certified plastic surgeons who donate their time and surgical skills to reduce the patient's surgery expenses. My Hope Chest provides funding for hospitals, surgical facilities, anesthesia, laboratories, supplies and other related expenses. In 2018, it amended its grant criteria to help underinsured women pay their copayments, deductibles and nonmedical bills such as rent, medication and utilities. Alisa estimates breast reconstruction costs more than $25,000 per patient at a cash-pay rate; however, partnering with plastic surgeons reduces the expense to approximately $13,500.
"Plastic surgeons provide the final step in breast cancer treatment," she says. "Reconstruction is not cosmetic. Some surgeons no longer perform reconstruction surgery because it's not lucrative and takes nearly a year to finish. Thank goodness there are some great plastic surgeons already providing free surgeries, but there could be more when they know we exist."
In the early stages of establishing My Hope Chest's mission and vision, Alisa approached her surgeon, the late William Zamboni, MD, with her idea of a formal organization and invited him to come onboard as the founding surgeon. His immediate response was, "Count me in." Those three words clinched the charity's first surgeon partnership and moved their mission forward. Since then, My Hope Chest has recruited ASPS members to help and provide free or significantly reduced surgeries in many states. Their long-term goal is to develop surgeon partnerships in every state – ideally, with hospital partners that could ease the organization's long and growing wait list.
ASPS member Antonio Gayoso, MD, Florida, became the first surgeon to help restart My Hope Chest in the Tampa Bay area. Dr. Gayoso, who dedicates a significant portion of his practice to breast reconstruction, encourages other plastic surgeons to join the cause and donate their services to the organization.
"Plastic surgeons understand the importance of breast reconstruction after a mastectomy," he says. "If women don't have their breasts, they think about it every time they get dressed or put on their prostheses. Part of my job is to help women not to think about their breasts anymore or stare at a deformity every day. Some doctors haven't placed an emphasis on reconstruction, or they offer mastectomy without reconstruction to uninsured or low-income patients – as if reconstruction is a luxury.
"We are providing medically necessary care for neglected patients," he adds. "Breast reconstruction fulfills a need."
Taking action
Alisa's determination to help survivors fueled her during trying times. She refinanced her Las Vegas home three times to keep the charity afloat. After losing her property in the 2008 financial crisis, Alisa moved back to Seminole, Fla., and restarted the organization. She built a new Board of Directors and ran the charity from her mother's dining room table for years, volunteering her time as the CEO, client navigator, event planner, fundraiser and social media specialist until funds were raised for her small salary and their first office.
"The applications never stopped," she recalls. "I was running the company with one-and-a-half staff members by pulling all-nighters without caffeine to push through all the work. If any other charity was doing this work, I wouldn't have started My Hope Chest because I don't believe in redundancy of mission. Breast cancer was not my charitable cause, nor the future I anticipated. I was an e-commerce pioneer in the furniture business in 2000 and likely could have funded My Hope Chest myself had I stayed the course after cancer. But I decided to change direction because this is bigger than me. God had a plan, and I've been doing my part in this lane for a very long time. I truly hope this year is a turning point to help these women."
Alisa concedes the organization's unique mission to focus on the back-end of cancer treatment remains overlooked. She discovered grant programs were highly competitive and grantors didn't allocate funding for breast reconstruction. She also struggled to rally support for her cause due to the lack of awareness in the breast cancer world.
"Before The Plastic Surgery Foundation (PSF) developed the Charitable Care grant, there was no other entity we could reach out to that provided funding specifically for what we do," says Alisa, adding the grant she received from The PSF will fund her nonprofit's virtual Bling A Bra for Breast Cancer campaign in October to raise funds for reconstruction. "Charities sadly compete for dollars, and the charities with the biggest marketing budgets always win. Most people see and support the bigger charities and the little ones struggle to stay afloat – no matter the disease or cause."
Beyond raising funds, My Hope Chest aims to educate survivors on their options and raise public awareness of breast reconstruction as the missing part of treatment for uninsured survivors. Alisa says more people need to take action to meet the needs of breastless survivors and underinsured patients struggling financially.
"Pink crusades and breast cancer awareness campaigns in this country are redundant," she says. "We're all aware that breast cancer exists but awareness is not a formal organization. Breast cancer dollars are needed for research, reconstruction and bill-pay and co-pay assistance – that's it. Women needed to be educated on their options.
"At My Hope Chest, we never insinuate a woman isn't whole or complete if she doesn't desire breast reconstruction, but everyone on our waitlist wants it," she adds. "All women should know their options and have the guidance and resources to start and finish treatment."
Underinsured: An answered prayer
My Hope Chest surgery recipient Bonnie Medina, 46, underwent her first breast reconstruction procedure in May. Although her health insurance covered her double mastectomy and chemotherapy in 2017, breast reconstruction seemed out of reach due to her $7,500 deductible. Bonnie convinced herself to forget about the procedure and embrace her breast prosthetics, but a shopping experience last year changed her mind.
"I didn't realize how much not having my breasts impacted my self-image until I started shopping for my Christmas dress," she recalls. "It finally hit me, and I started crying. I realized I wanted to look into the surgery and do whatever I needed to help myself feel complete."
As a single mother with a new mortgage and mounting medical bills from her mastectomy, Bonnie struggled finding funds for the procedure. She says her prayers were answered when she stumbled across a news segment on My Hope Chest. She took it as a sign.
"I read the testimonials on the website and started to fill out my application, but I stopped because I didn't think I would qualify," she notes. "I'm a nurse and I make a good income, but I stopped working for a full year for my surgery and treatment. Alisa called me directly and encouraged me to complete the application."
Although the Women's Health and Cancer Rights Act of 1998 requires all group health plans that cover mastectomies to also provide coverage for breast reconstruction, Alisa notes many underinsured women in a gap, as Bonnie was, reach out for assistance. Their search for a plastic surgeon in Bonnie's insurance network led to ASPS member Dallas Buchanan, MD, who volunteered to perform his first reconstruction for My Hope Chest.
The procedure changed Bonnie's life.
"Thanks to My Hope Chest and Dr. Buchanan, I got something back that was taken from me without a choice," she says. "I feel like a full woman again and like my normal self before cancer. I can walk out holding my head up better because I feel complete. When you lose something that's part of you, you don't realize how much you will miss it until it's really gone."
Dr. Buchanan says he will donate his time and skills to My Hope Chest in the future, and he commends Alisa's efforts for helping women often forgotten by the healthcare system.
"Bonnie's case rings true all around the country," he says. "Treating cancer is certainly paramount, but reconstruction is a huge step in the process and can restore a woman's femininity and help her move on with her life. It's really important for a charity like My Hope Chest to step in and not only help people who don't have coverage, but also to provide for the people who are underinsured and be the bridge to get them the services they need."
Uninsured: Glimpse of wholeness
Carleen Hobbs of Alaska was expecting her fifth child when she received a stage 3 breast cancer diagnosis at age 30 and a 15 percent, five-year survival rate. After passing her seven-year mark, Carleen decided she wanted reconstruction. The first stage of the procedure wiped out her family's savings, and she couldn't find anyone to fund her remaining procedures.
"We started the process hopeless and wondered how we could make it happen, because we couldn't afford it and no one would cover me because they considered my condition pre-existing," Carleen says. "There's so much support for breast cancer out there, but I was shocked that no one was helping uninsured women get reconstruction. My Hope Chest was the only organization that helped us."
Before her breast reconstruction, Carleen, now 42, remembers constant throbbing pain around her chest after her bilateral mastectomy. The mother of five often shielded her chest with a pillow before she hugged or interacted with her children. She notes she experienced immediate relief after her procedure and says the pain never returned.
"I remember holding my infant niece one day after my reconstruction process, and she snuggled her head against my chest," she recalls. "The whole room around me was talking, but I just melted into tears because it had been eight years since a child had laid their head against my chest without pain. I previously took those moments for granted. Reconstruction is a gift that puts a little normalcy back into my life."
My Hope Chest covered Carleen's remaining four procedures and partnered with Angel Flight to transport her to her volunteer plastic surgeon in Seattle. It took five trips over a two-year period to complete the process. Carleen says the procedure improved her quality of life, including intimacy in her marriage.
"Cancer at 30 robbed so much of my life and took years from us," she says. "My scars were so severe and visible all the time. I saw a constant image of brokenness before me every time I got dressed. Dealing with brokenness is a constant journey as a breast cancer survivor, but these glimpses of wholeness and healing make it bearable.
"I'm amazed Alisa had a vision for those of us who don't have insurance but are unreconstructed," she adds. "It's a small niche, but it's a mountain we could not climb alone."
'Still waiting'
When Alisa reflects on her journey – the sleepless nights, sacrifices, tears and dreams she put on hold – she says she has no regrets. Witnessing survivors' joy and newfound confidence after their reconstruction keeps her going and reminds her why she started the charity 17 years ago.
"I believe 100 percent I was divinely chosen for this task," Alisa says. "I wasn't married and didn't have children, so I was able to dedicate every bit of my being to this cause. My Hope Chest was my baby. I birthed it. I cared for it. I watched it grow."
Looking ahead, Alisa hopes to raise funds to further expose the problem in her passion project, "Breastless in America... Still Waiting," a short documentary featuring survivor stories and plastic surgeon testimonials. Her ultimate goal is to eliminate the waitlist, which will require more funding and sponsorships.
"I've been so dedicated and passionate about fixing this problem, and I pray it's going to leave a legacy," she says. "It's going to take continued support, more plastic surgeons, increased awareness and lots of money to sustain the work and help us grow."
Alisa is overcome with emotion while reflecting on the number of women still living without their breasts and waiting to complete their cancer journey.
"At some point, you get angry and frustrated with the system," she says. "These women are counting on us. I want My Hope Chest to be around until there's a cure for breast cancer. I want it to be sustainable and immediately help every woman who applies to us.
"Regardless of your age, sacrificing life over limb to survive cancer is devastating," she continues. "For us to be able to fill this gap in treatment and provide breast reconstruction to women feeling truly hopeless, is priceless. They are unbelievably grateful for the rest of their lives. You simply can't put a price on its impact. I'm honored to be a part of this happy part of their lives and bring closure to their cancer journey."
To find a qualified plastic surgeon for any cosmetic or reconstructive procedure, consult a member of the American Society of Plastic Surgeons. All ASPS members are board certified by the American Board of Plastic Surgery, have completed an accredited plastic surgery training program, practice in accredited facilities and follow strict standards of safety and ethics. Find an ASPS member in your area.
