Post-Mastectomy Fitters Find Their Niche in the Breast Cancer Community

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By Linda M. Hellow

A certified mastectomy fitter does more than just fit a prosthesis.
She or he is a valuable information resource and a sympathetic ear for women in a health crisis.

Wendy Carter

Carter

Every year, more than 230,000 women receive a breast cancer diagnosis. Surgical options will be discussed and many women will face an amputation of one or both breasts in addition to lengthy drug and radiation therapies. Certified mastectomy fitters play a special role in helping women feel whole again. With advances in off-the-shelf (OTS) and custom breast prostheses, women have options to achieve a comfortable fit that looks natural. But finding out about those options before the mastectomy-when important post-surgery decisions are being made-is often problematic.

In fact, Wendy Carter, CFom, LPN, with the Ability Prosthetics & Orthotics, Charlotte, North Carolina, patient care facility, says gaining access to women for preoperative consulting is the most challenging part of her job. With the focus on curing the cancer, Carter says, the cancer care team may not be giving the patient all the information she needs to feel confident about her post-surgery body. With information about post-mastectomy choices in the hands of surgeons, reconstruction is often the focus, and the prosthesis option can be overlooked, she adds. According to the American Society of Plastic Surgeons, breast reconstruction surgeries increased 16 percent from 2000 to 2012.

Leigh Anne Ball

Ball

"Women don't all want to have yet another surgery," says Carter, who is the clinical director of operations for Symmetry, Ability P&O's post-mastectomy division. "They're thankful to be alive. They're happy that there is another route. The last thing they want, really, is to go back in for another surgery. But, unfortunately, if there's [no information] available to them, then this is the decision they feel forced to make."

Leigh Anne Ball, CFm, of Shaw's Prosthetics Plus, Owensboro, Kentucky, says gaining access to cancer patients requires diligent networking within the medical and breast cancer support communities. Ball says she approached the nurses of the surgeons who do mastectomies in her area. (Ball and Carter both offer free consultations.)

"I have wonderful relationships with several surgeons," Ball says. "They bring me in to talk to patients before they ever have a mastectomy. That way the patients know their options as far as post-mastectomy care versus reconstruction. And whatever they choose, that's their choice, but at least they have those options in front of them."

Leigh Anne Ball

Medred and Kitchens

Certified mastectomy fitters don't always work in allied medical professions where networking with surgeons might be customary. A 2011 American Board for Certification in Orthotics, Prosthetics & Pedorthics (ABC) survey showed that 51 percent of certified mastectomy fitters worked in a retail setting at either a medical supply store, pharmacy, or post-mastectomy boutique. In comparison, 31 percent worked at an O&P facility. Samantha Medred, CMF, operates a mastectomy boutique, Uniquely You, Bradenton, Florida. She relies on her store's high visibility location-just off an interstate highway-and the company's website for marketing. Her networking strategy focuses on the breast cancer community, for which Medred and her business partner, Whitney Kitchens, serve on committees. Medred even wrote an informational book for the local American Cancer Society chapter on post-mastectomy prostheses in an effort to inform more women before they undergo surgery.

Other boutiques are affiliated with hospitals, which gives them unique access to patients and surgeons. Marcia Britvan, MBA, is the administrator of the Simms/Mann-University of California, Los Angeles (UCLA) Center for Integrative Oncology. She oversees the operation of Reflections, a 650-squarefoot retail store with three part-time certified mastectomy fitters on staff. Operating as a nonprofit, Britvan says the store serves the center's broader mission to meet all the needs of their breast cancer patients including counseling, education, and approved medical supplements. She considers Reflections something of a hybrid between a retail store and a clinic where physicians can send patients for consultations at any time during treatment.

Ball with patient

Ball consults with a patient. Photograph courtesy of Shaw's Prosthetics Plus.

Emotional Support

Providing emotional support to women who are purchasing a breast prosthesis is an important part of the job, Carter says. She notes that in addition to the trauma associated with losing a breast, women may still be in treatment-treatment that may further alter their appearance, such as weight changes, hair loss, rashes, and brittle nails. Indeed, some women may still be fighting for their lives.

"You have to look at a woman who probably just found this lump a month ago, and the process moves so quickly," Ball says. "These people don't have time to think. So when they come in and talk to me, we just slow down.... [I]t isn't just about seeing a patient and putting a bra on them," Ball says. "You develop a relationship with these patients. You know their cancer story. And you really need to know how to approach that as well as the clinical aspect of it."

Carter says working with women being treated for breast cancer is different than working with individuals who have lost a limb. "Patients who lose a limb get a fight or flight type of attitude," she says. "They're more, 'Let's go; let's move forward.' With women...it's a very private part of the body versus a limb. It's their womanhood. It's sexual. It's physical."

Britvan, who recently hired a third part-time fitter, says it's easier to teach fitting techniques through certification classes than to teach how to help women emotionally. "We needed someone who could learn to identify when someone was in psychosocial distress," she says, "and perhaps direct patients to our center for psychosocial support...or to just be present with patients while they cry. What we were looking for was someone who had compassion and retail sensibility and who could learn the mastectomy fitting."

One of Britvan's most recent hires came from a lingerie retail business, and all of her employees have friends or family members who have had cancer. This combination of personal experience and sales skills, followed by training in breast prosthesis fitting, has proved to be perfect for Britvan's situation.

The Fitting

Reflections fitter with customer

From left: Angela Bray, a Reflections fitter shows Elaine Wise approved medical supplements sold in the store. Certified fitters working for Reflections also have to learn the benefits of the supplements they carry. Photography courtesy of Nancy Williams.

Wigs

Wigs and head coverings are additional inventory often sold at post-mastectomy boutiques. Photograph courtesy of Reflections.

A scheduled fitting appointment can take from 45 minutes to an hour, and Medred says she begins by just listening to find out what a client's expectation is. Then she shows her the different prosthetic forms and bras. Most women find an OTS silicone form provides the fit and balance they need. Foam is also an option, as are custom forms. She maintains an inventory of 12 different forms in every size, usually two of each one. OTS silicone forms, which are less expensive than custom forms, are usually paired with a pocket mastectomy bra to hold the forms in place.

Post-mastectomy boutiques typically carry additional inventory such as wigs, bathing suits, and even skin creams suitable for patients undergoing radiation. Both Medred and Britvan say their stores' décor is intentionally comfortable and homelike, complete with sofas and spacious fitting rooms. A relaxed setting, they say, is appealing to women who spend a lot of time in physicians' offices. Medred notes that women who walk into her store express gratitude for a place to shop that is more appealing than a medical equipment store or pharmacy.

A small percentage of fittings require a custom prosthesis, such as the type made by Radiant Impressions of TruLife, Jackson, Michigan. Carter uses a scanner to get a 3D image of the chest wall and sends it to Radiant Impressions. In a few weeks, the client gets a prosthesis that matches her skin tone and will adhere to her unique chest wall. Medred says the custom prosthesis is considerably more expensive but is ideal for some women such as those who have a lot of scar tissue. For example, Medred says one of her customers had multiple breast reconstruction surgeries because her body repeatedly rejected the implants. Consequently, the build-up of scar tissue required a custom prosthesis to get a good fit.

Insurance

A conversation about insurance coverage begins when the client calls to schedule a fitting. The 1998 Women's Health and Cancer Rights Act mandated that insurance companies that cover mastectomies must also cover breast reconstruction and external breast prostheses. Medicare and most private insurance carriers cover a foam prosthesis every six months or a silicone prosthesis every two years. Mastectomy bras are usually covered as well. Ball says knowledge of insurance coverage is essential.

"As a mastectomy fitter, you should know the Medicare standards," she says. "You should know what they pay for and when they pay for it...because you don't want to go in there with a patient and give them such high hopes and say, 'Well you can get this and you can get that,' and then come back in the room 30 minutes later and say, 'Oh, sorry, your insurance will only pay for this.'"

Ball spends about 15 percent of her day obtaining insurance authorizations and completing paperwork. Ability P&O's billing department handles all the reimbursements and authorizations, but Carter says she still has to know who pays for what in order to serve her clients.

Bathing suits

Uniquely You also offers mastectomy bathing suits.

Wigs

From left, Kitchens and Medred store bras in their spacious fitting room so all products are handy during a fitting. Photographs above courtesy of Leah McNaughton.

For fitters working in a retail setting where insurance billing is not necessarily routine, the process can be more time-consuming. Medred says the decision to offer clients insurance billing was both practical and a valuable service to customers. "It was hard [to make money] when we didn't have insurance contracts," she says, "because why is someone going to come to us when they're in network somewhere else? There is a big difference for the customer between paying 60 percent and 10 percent...and we just think that when someone is going through everything these ladies are going through, we want to do as much as we can to help and not be another thing for them to worry about."

When Medred and Kitchens opened their store a year and a half ago, they began the process to be in network with major insurance carriers, but they hit a snag. Because their business was a "boutique" and not a medical facility, the carriers wanted to classify Uniquely You as durable medical equipment (DME). There were already other DME providers in the area so the insurance companies often told Medred that their network was closed.

"But if you look around, there are only two stores in the area," she says. "And they don't provide mastectomy inventory. So a lot of our work was just finding the right person at the insurance company to explain what we did."

Eventually, Medred says, Uniquely You was added to the major insurance networks, some listed it under DME and others as O&P. Both Medred and Britvan note that offering this service is not without pitfalls. Delays in reimbursements and excessive time spent filing paperwork and verifying coverage impact the business' bottom line.

"Some payments are 30 days [out] and some are six months to a year and we still haven't gotten paid," Medred says. "The insurance companies will deny payment, and it's their mistake. We resubmit but that's another 30 to 60 days before we get payment. They can deny for any reason, and there's no fast-tracking that resubmittal."

Despite the challenges with insurance reimbursements and getting information to women earlier in treatment, Carter and other mastectomy fitters agree that their profession offers rewards every day.

"The usual reaction after a fitting," Carter says, "is that...their completeness has been restored."

"One lady made my day," Medred recalls. "She came in and said, 'This is what I wanted. I kept going to durable medical equipment stores, and it just doesn't feel right.' And she almost started crying. So she was very happy.... That's what we were striving for."

Linda M. Hellow is a freelance writer in Centennial, Colorado.