Finding out that you have breast cancer is overwhelming, and the struggle isn’t made any easier by having to figure out what to do after a lumpectomy or mastectomy, or how to deal with other conditions, such as lymphedema, that may occur after surgery.
The good news is that there are people who can help women through this journey, and products—most of which are covered by insurance—that can make the transition easier.
In 1998, the Women’s Health and Cancer Rights Act (WHCRA) was passed, which provides protections to patients who choose to have breast reconstruction in connection with a mastectomy. The federal law requires both group health insurance plans and individual health insurance policies to provide coverage for all stages of reconstruction of the breast on which the mastectomy has been performed; surgery and reconstruction of the other breast to produce a symmetrical appearance; and prostheses and treatment of physical complications of all stages of the mastectomy, including lymphedema.
“While the WHCRA requires insurance companies to pay for breast cancer products, which are considered durable medical equipment, where it gets confusing is that a person’s deductible and co-insurance also apply, which means that most women will be paying some out-of-pocket costs as well,” explained Kristin Garrison-Smihal, who owns K & J’s Complete Woman Specialty Boutique with her mother, Kathy Garrison.
Since 1990, K & J’s has been providing women with the post-surgery products they need, in addition to wigs, hairpieces and head coverings, compression garments, and maternity items. Kathy Garrison, a cancer survivor, founded the boutique with friend Joanne Evans after she could not find comfortable breast prosthetics and mastectomy bras following cancer surgery.
Depending on the type of surgery a woman has, she may need a garment to wear afterwards, such as a compression bra following a lumpectomy, or a camisole with pockets for drainage following a mastectomy.
“This is often doctor-specific; some hospitals provide the bra right after surgery, while other doctors send their patients to us; we’ve been around so long that we know what their surgeons want them to wear,” said Garrison-Smihal.
Even after a person has healed from surgery, specialized products may be required, including silicone prosthetics and mastectomy bras, or camisoles that have built-in shelf bras to hold a prosthetic.
“Some insurance companies cover these, and some don’t,” said Garrison-Smihal, noting that Medicare Advantage plans and commercial plans have different coverages. “Each insurance company has a certain allowance, and we try to fit into what they allow; for example, Blue Cross Highmark allots $30 for a mastectomy bra, and Medicare allots $36.
“Patients who have had a lumpectomy and/or reconstructive surgery may also require specific bras because of how much tissue was taken or as the result of radiation,” she added, noting that these procedures could result in asymmetric breasts of up to a cup size difference. “We carry products to keep implants in place and to make sure that they are balanced; we have a whole litany of products based on what a person’s surgery is.”
For women without insurance or who need financial assistance, there are programs available to help.
“Most hospitals have foundations, including Butler Health System and Heritage Valley Beaver, who can help if a patient doesn’t have insurance or needs some assistance,” said Garrison-Smihal. “In Pennsylvania, if you have breast cancer and don’t have health insurance, there is a program where you can automatically get health insurance through a government-funded plan while in active treatment.”
Finding the Right Product
Unlike regular bras, the garments required after breast cancer surgery require fitting by an expert certified in this area.
“If you provide mastectomy services and bill insurance companies, you have to become board-certified, which requires 500 clinical hours of working with a certified mastectomy fitter, in addition to at least 40 hours of didactic training,” said Garrison-Smihal. “Then you have to pass your boards to receive certification.”
As with any surgery, there can be complications, and medical garments can exacerbate these issues if they are not fitted properly.
“A significant percentage of women who have had breast surgery suffer from lymphedema as a result of lymph node radiation, which can show up in the arms, breast or torso,” said Garrison-Smihal. “Women come to us for compression garments, including sleeves, bras, and vests, and we also work with a lot of physical therapists who specialize in lymphedema following breast surgery. But if these garments are not fitted properly, it can actually increase the swelling.”
The staff at K & J, most of whom are cancer survivors, understand the difficulties that women face after breast cancer surgery. With locations in Seven Fields, Monroeville and McMurray, they are one of the few boutiques that caters to this specific group of clients.
“We are very mission-driven,” said Garrison-Smihal. “My mother is the real rock star; she had breast cancer in the 1980s and also had two more recurrences. And when she couldn’t find the products she needed, she met with a sales rep who carried these types of products and opened a store with her in 1990. It’s since grown into what it is today.”
In addition to helping clients find the appropriate products, Garrison-Smihal says that their staff offers peer counseling during the hour-and-a-half fittings to ensure that every person leaves the store feeling comfortable and understood.
“Women with breast cancer, especially new patients, are facing so much,” she said. “It’s nice for them to be able to talk to someone who gets it.
“People make the assumption that life goes back to normal after you’ve had breast surgery and reconstruction, but that’s not true,” she added. “It’s a long healing process; reconstructive surgeries take a long time, and people sometimes need revisions. And not everyone is eligible for a reconstruction.”
She notes that insurance companies have been cutting the amount of garments that clients can get to two bras a year, despite the fact that bras that carry prosthetics only last for six months.
“Unless you’ve been through it, you have no idea how complicated all of this can be,” said Garrison-Smihal. “I feel lucky that I get to meet all of these incredible women and help them through the process.
“They become part of our family,” she continued, adding that her mother’s first patient in 1990 still frequents the boutique. “It’s incredible to be able to build these types of relationships.”