Options in Post-Mastectomy Prosthetic Care
August 2020 Issue
She didn't realize as she prepared for the procedure that her life was about to change. An abnormal mammogram that day led to a series of follow-up tests. Then, on February 13, 2017, Marty received a call from her physician with the diagnosis of triple negative breast cancer.
Her shock resounded like a bass note. "I had no symptoms, no lumps, no bumps, no swelling, no pain, and no family history," says Marty, who lives in Florida and was 43 years old at the time. "I simply went in for my routine mammogram. I wasn't anxious at all."
After meeting with her oncologist and surgeon, she was presented with two treatment options: a lumpectomy and radiation or a mastectomy and chemotherapy.
"I had always told myself that if I ever got breast cancer, I would go with a mastectomy, so that was my jumping off point," Marty says. "My decision-making process included wanting to know everything about everything."
Everything included what life would look and feel like after a mastectomy, and how well her body would recover since she would be receiving chemotherapy simultaneously. Her thoughts centered on what reconstructed breasts would look like. And what about women who opted to go without reconstruction? What would that look like, and which patients were happiest with their results?
After a volume of research and numerous discussions with her husband, family, and specialists, Marty opted for a single mastectomy, without reconstruction, followed by four rounds of chemotherapy. "As I prepared for surgery and chemo," she says. "I remember thinking that no matter what unfolded in the coming months, and hopefully years, I would be accepting of my new body."
Evolution of Care
Breast cancer surgery and post-mastectomy care have changed over the past several decades from Halsted radical mastectomies, where surgeons would remove the breast and muscle, everything down to the chest wall to a modified radical mastectomy, a less invasive procedure where only the breast and lining of the muscle are removed.
And before silicone breast implants were introduced into the world of post-mastectomy care in the mid-1970s, women resorted to creative ways of making their own breast prostheses, say Shan Willoughby and Andrea Coomans, marketing manager and director of sales, respectively, for Amoena USA. Amoena, the originator of the silicone breast prosthesis, based in Raubling, Germany, and Amoena USA in Kennesaw, Georgia, recently marked the company's 45-year anniversary. Some women have used socks, homemade forms of foam, Knitted Knockers, fabric bags filled with Styrofoam beads or birdseed, while others have simply chosen to go flat.
"Many women still resort to these solutions today. They may not know that breast prostheses exist, or they're uninsured or underserved," says Willoughby, who has been in the industry since 1997.
One of the hardest aspects Marty says she had to deal with from the onset of her journey was that she could not find a prosthetics retailer where she resided that would accept her insurance. She says she became so frustrated with her search that she abandoned the idea entirely. "Once I recovered from surgery, I created my own breast insert with inexpensive products that I could find in any lingerie department," she says.
Sandy Warner, CFM, has been a fitter for women needing post-mastectomy care since 1997, when she took one of Amoena's classes.
She owns and operates A Better Fit, Kennewick, Washington, and knows well the intimate and compound struggles women battling breast care often face.
The insurance process was much easier 23 years ago when she entered the industry, Warner says. "The credentialing and contracting worlds have changed so much," she says. "When I consider finding someone to replace me, it gets overwhelming to think about guiding them through the process."
Warner is self-employed and says if she had to pay someone to make her appointments, do fittings, place orders, and do billing, she would not be able to pay herself. Then there's the accounting portion of the business, posting the charges and payments and addressing rejected claims, etc. "I can see why some people give up on it," she says. "But it's all worth it, and I get a tremendous amount of joy and accomplishment helping women."
In October 2018, while Marty was still trying to determine and come to terms with her new normal, she was introduced to a fitter from Amoena. It had been nearly two years since her surgery, and she had never been professionally fitted for a breast prosthesis.
The first session with her fitter remains etched in her mind. "She listened to me, educated me, and then she guided me to a breast prosthetic that she thought best suited me," says Marty.
Marty was introduced to Amoena's Contact breast form, a prosthesis that attaches directly to the chest wall with an adhesive silicone. It has patented technology to equalize chest wall temperature and help keep the wearer from perspiring behind the form, Coomans says.
While the Outlast phase-change technology, which is used by NASA, is not new, it is advanced for the industry, says Coomans, who manages the western region of the United States for Amoena, and is also a breast cancer survivor. "For a woman who does not like to feel a breast form moving around as she bends over or is active, or for the woman who likes to just feel like herself again, this is a fantastic form for that," says Coomans, who also wears the Contact breast form.
Unlike other breast prostheses, which are placed into pockets, Amoena's Contact breast form can be worn with any bra. No special pocketed clothing is needed, Coomans says. "For the first time, a woman can say she feels like her old self when she tries the Contact breast form," she says.
Marty agrees. "It really helps me feel more like my pre-surgery self again," she says. "Especially when I take my bra off at the end of the day because it doesn't plop to the floor, like it would with a traditional breast form in pocket. My bra goes on and off just like it did before my surgery."
There's no comparison to the inserts Marty created after her surgery and the attachable breast form. "It's also weighted enough so that my bra doesn't ride up on my chest like the lightweight breast insert I created for myself," she says. "Most importantly it is attached to me, so when I'm wearing it, it feels more like me. I don't even realize it's there most of the time."
Warner says it is important for her to build trust and show confidence when guiding a client through the fitting process. "When it is new for a woman, they don't know what to expect usually, so it feels so wonderful when they can trust me to help them look and feel better. I treat them the way I want to be treated and I think they can tell that."
Weight, Climate Control, and Softness
Three significant survivor-led developments in the last ten years are weight, climate control, and softness, says Dominik Rechenberg, the national sales manager with American Breast Care (ABC), Marietta, Georgia. ABC has been providing US-manufactured breast care products to breast cancer survivors since 2003. "We addressed these concerns by adding lightweight and air product lines and massage and diamond breast forms to increase airflow, regulate temperature, and offer a softness that mimics breast tissue."
Earlier this year, ABC introduced its MyShape RFS Breast Prosthesis with Amandasil technology. "The breast form back is moldable and stays in place to create a personalized fit without compromising the weight," Rechenberg says. "It's a remarkable form with a shape that we call the American Fit."
Amoena's Adapt Air, the company's newest post-mastectomy breast form,
is an adjustable prosthesis with a patent-pending integrated air chamber. "This product was years in the making," Willoughby says. "There was a need for a woman to be able to adjust her form as her weight fluctuates during treatment, lymphedema, or any time. She may have been fit when she still had a little swelling, or she may have truncal edema."
Warner is a fan of the Adapt Air. "It gives us more versatility with a woman's changing sizes and shapes," she says. "It allows them to look symmetrical in any of changing bra styles."
Insurance coverage was also a problem for Valencia Robinson, who was diagnosed with breast cancer in October 2006 at 33 years old.
An English teacher with four small children at the time, Robinson had a double mastectomy (she also had no family history of the disease and was otherwise healthy before her diagnosis). Her reconstructive breast surgery included tissue expanders. Robinson says she continued to teach while receiving chemotherapy. "I thought that was the hardest thing ever," she remembers. "It wasn't until I had the double mastectomy with the tissue expanders and developed a very bad infection that I realized I was closer to death with the infection than previously with the chemo."
Robinson, who lives in Florida, didn't start working with a fitter until two years after her surgery. She had to have several surgeries on her chest to remove the expanders, which created two large holes in her chest. "Then I had an additional surgery to get the flat chest I have now," Robinson says. "I was very sore for a while and started with a fitter as soon as I could."
Robinson met Amoena representatives at a national conference several years ago and has worn its Natura Xtra Light breast form since. She has had to change fitters four times based on her insurance, she says. "I wear my prosthesis almost daily so having comfortable bras and getting someone who knows what they're doing and measuring me correctly is very important."
The Natura Xtra Light prosthesis can be up to 40 percent lighter than standard silicone forms of the same shape and size, Coomans says. It is designed for women who have lymphedema and osteoporosis and is also a benefit for women who have a large bust. "Weight is a big factor for women wearing breast forms, but light weight is not always the right weight," she says. "It's important to replace the weight that the body lost when a breast was removed, particularly for unilateral women."
Care During the COVID-19 Pandemic
The pandemic has changed the way women are receiving care. Robinson and Marty say they are being extra cautious during the pandemic. Robinson says she has not been able to order bras and is overdue. "I will call my fitter to just order what I had last year instead of going in for an appointment," she says.
While COVID-19 has not affected Marty's medical care plan, it has increased her anxiety and has changed most everything she does in her daily life because she's immunocompromised from chemotherapy. "I am considered high risk," she says. "So I have to be extra careful with everything I do. Taking so many extra precautions has been taxing, but overall, I feel like I've been coping well."
A Future Wish List
What does the future hold for breast prostheses and post-mastectomy care?
It's more of a wish list, Willoughby and Coomans say. "These are not facts, but things we see as trending in various industries, not just breast care," Willoughby says. "They are assumptions for the most part, or wishes, maybe."
There's a movement toward more customization, Willoughby, Coomans, and Rechenberg say. With products trending towards personalization, industry professionals will start to see products with more custom shapes, skin tones, and physical attributes such as freckles.
Wearable technology could also be a part of breast forms, Willoughby and Coomans say. There are products currently on the market—such as activity trackers and blood sugar monitors—that provide real-time information on how one's body is performing. It could be possible someday to see similar technology in breast prostheses and textiles, the women say.
The future for post-mastectomy care lies in the options available to women, Rechenberg says. "Certainly a very promising option are custom breast forms," he says. "With partial and breast-conserving surgeries becoming more prevalent, it is going to be more important than ever to offer products that fill those surgery sites and meet the needs of the customer."
Warner says the way the industry has changed comes in the products available for women as demand increases. "The breast forms that keep women cooler and drier have offered them the biggest selection," she says.
In addition, there's an increase in younger women being diagnosed with breast cancer, and their needs are more modern and fashion forward, the women say. There's also a shift toward more lumpectomies and fewer mastectomies, which fluctuates depending on the state, East Coast or West Coast, or just in pockets in some areas, they say. Since more reconstruction surgery is also being done, it means more balance shapers will be needed in the future. "When a woman has reconstruction surgery it is not a one and done thing," Coomans says. "There are weight changes or shrinkage in a reconstructed breast that has been radiated prior to reconstruction."
And the latest trend in the last half-dozen or so years is a movement toward "flatties," where women are choosing not to wear anything, a decision that still needs to be a well-informed one, Willoughby and Coomans say.
"It is very important that a woman understand all her options." Coomans says. "A breast prosthesis is a non-surgical choice that can help replace the weight and balance she lost. Without that, for some body shapes, damage could occur to her shoulders and spine." Finally, the latest trends and personalized, more advanced care, however, won't be helpful to any woman if she fails to get screened for breast cancer regularly.
"I can't say it enough, early detection and swift treatment saved my life," Marty says. "Get your mammograms, ladies."
Betta Ferrendelli can be contacted at firstname.lastname@example.org.