Post-Mastectomy Care: Changing Reality for Patients

Time has altered general attitudes, available treatments and products for breast cancer patients.

© 2009 Courtney

This month, the pink ribbon campaign will be out in full force spreading messages of hope to women around the globe during breast cancer awareness month. Twenty-four years following the kickoff, the annual, now month-long, campaign holds true to the initial roots of its inception but the stigma and secrecy that shrouded personal battles with breast cancer seem to have been lifted. This is due in part to changed attitudes and available information.

These changes, along with surgical advancements and medical treatments, have necessitated the evolution of the products available to breast cancer survivors and along with it, have altered the way they receive these services.

General attitude changes

Diana Karlsen, CMF, a breast care specialist for American Breast Care located in Marietta, Ga. recalls a patient she met in the 1990s. The woman was in her 70s and she had undergone a mastectomy. She went to lunch with a group of eight girlfriends on a regular basis and confided in them her struggle with breast cancer and surgery. When she shared her story, the other women each revealed that they had fought breast cancer previously – in secret – without the support of their closest friends.

When she tells this story, Karlsen reiterates that this was during the 1990s and focuses on the strides made to overcome stigma since then.

The spread of accurate information is pivotal in continuing the fight against breast cancer worldwide.

Judi Simon, CMF, president of Nearly Me Technologies located in Waco, Texas recalls a similar story.

“My best friend from high school – now this is going back into the 1960s – her mother had a mastectomy when she was 38. I never knew it. She was like a second mother to me and I never knew it because she never talked about it and her daughter never talked about it,” Simon told O&P Business News. “I didn’t find out until almost 30 years later when I started working in this business.”

Karlsen and Simon agree that general attitudes with the population have changed over time; a result of available information and awareness.

“Now people talk about it all the time,” Simon said. “It’s a great thing that people are talking about it because they are more informed.”

Patient attitudes

Patient attitudes, however, are another story. The grief stages that flood a patient with breast cancer or post-mastectomy have not changed; they just might be more open to talking about those feelings.

“They are overwhelmed with the diagnosis and the treatment they will have to go through,” Cynthia May, CMF, manager of the Image Recovery Center at Rockingham Memorial Hospital in Harrisonburg, Va. said. “It changes their lives completely.”

Simon agrees stressing that in the years she has been working with post-mastectomy patients, despite advances in medical treatments, women still equate their breasts with femininity and fear being less of a woman following surgery.

“I have ladies that come in and haven’t worn a breast form in 3 years because they just couldn’t look at themselves,” Simon said. “No one can really say what is going through each woman’s mind.”

May also recognizes that every woman handles things differently.

“Most of the women who come in here are real fighters and they are more apt to get out there and talk about it. They want people to know you’ve got to get these mammograms – don’t put it off,” she said.

One thing that open communication has allowed for is that women have the opportunity to ask questions about their surgical options and post-surgical options, which can lead to better outcomes.

Surgical advancements

Early detection has made it possible to implement new surgical techniques including breast-conserving surgeries like lumpectomy.

“There used to be radical mastectomies that even if you had a pinpoint of a mass you lost your entire breast and even some of the flesh of your chest,” Simon said. “The actual amount of removal of the breast has changed dramatically.”

Early detection has made it possible to implement new surgical techniques including breast-conserving surgeries like lumpectomy. Breast-conserving surgery is applicable in certain early stages where the cancer has not advanced to fixation on the skin or muscle.

According to an article written by Lecia M. Apantaku, MD that appeared in the American Family Physician, a peer-reviewed journal published by the American Academy of Family Physicians, breast-conservation surgery and therapy are the most commonly prescribed course of action for breast cancer patients.

Skin-sparing surgery is another option under which all breast tissue is removed but the original breast skin is intact, making reconstructed breasts appear more like the natural breast.

But what do these women do following surgery? What are their options? Many women facing mastectomy or lumpectomy fail to have complete understanding of the options available to them post-surgery. Unfortunately, their first line of treatment, their surgeon, is not well-versed in these options either.

“It’s sad because they tend to think that the majority of women that come in want to have reconstruction but not everyone is a good candidate for reconstruction,” Simon said.

While reconstruction surgeries have also seen their share of advances, this option is not open to all women due to reasons regarding health and medical coverage alike.

“Women really need to be versed in all of their options before they go through surgery and they can do that. With early detection, they’re finding these small tumors and they aren’t [undergoing surgery] immediately,” Simon said.

Product evolution

With advances in medical treatments and surgeries, as well as general attitudes and awareness, products available to these women is also seeing adaptations to meet new and changing needs.

“We are asking our retailers and our customers: What do women need? They are letting us know what they like, what they don’t like and what their lifestyles are,” Simon said. “A 62-year-old woman today is very different than a 62-year-old woman 40 years ago. The baby boomers are more active. They’re doing different and more things.”

Breast forms

Pink ribbon

Breast forms have come a long way since they were introduced to women. One of the most remarkable and notable changes has been to the weight of the form.

“When they first started out with the form years ago, they were heavy. They didn’t have a light weight to them at all. It was hard for women to feel comfortable with them,” May said.

Early on, breast forms were made entirely of silicone. Even today, some companies produce these full-weighted forms due to patient interest, but for the most part, forms have moved on a lighter path.

“The revolution began and it has never stopped,” Karlsen said regarding lighter breast forms on the market.

Another huge concern for women was heat.

“When you wear a prosthesis, your body reflects the heat to that prosthesis and that prosthesis reflects back and it becomes very hot between the prosthesis and your chest wall,” Karlsen said.

Several products are available that offer climate control to reduce heat for the wearer — a huge step in the right direction for women’s comfort.

When it comes to mimicking that look of the natural breast, Karlsen said that products still have a long way to go.

“We still have a lot of challenges in bringing to women what compares to the natural breast,” she said.

For women who’ve undergone lumpectomy, companies offer partials, also known as balance forms or enhancers that fill in where it is necessary.

“I think there’s always going to be a need for the balance forms,” May said. “During breast reconstruction and conservation, even if they don’t remove a lot of tissue during surgery, within the next few years as your body changes, your breasts change.”

Balance forms fill that need for the patients.

“When you have a lumpectomy, when you have a portion of the breast removed, [reconstruction] is really not an option so there are a host of enhancers available,” Karlsen said. “They are considered a prosthesis but it is a partial because she still has breast tissue, she just doesn’t have enough to balance the other side.”

Simon agrees citing the climbing breast cancer survival rate.

“If you had breast cancer you were lucky to survive 5 years. That was considered a lifetime,” Simon said. “Now … these women are living 20 to 30 years so their whole body changes. You have to have forms that go along with those changes.”

Supportive bras

A good breast form is only as good as the bra that supports it. Karlsen said that this product line has changed dramatically over the years.

“In the old days, a good supportive bra looked almost like a vest,” she said. “It was so much coverage.”

Now, specialty bras are passable for fashion bras. This concept is so important for the woman looking to hold onto the femininity she thinks she’s lost through surgery.

“We have bras that people don’t think are specialty bras because they’re so pretty,” Karlsen said. “That, to me, is a breakthrough.”

In addition to offering a fashionable look, companies have also strived to offer more specific support important to wearers.

“They are looking for a bra that does the work and gives the support that they need to hold the breast form up close to the body but still looks like a fashion bra,” Simon said. “If the form fits up against the body, you can wear a good fitted bra, such as a mastectomy bra. Most fashion bras are narrowly cut under the arm and have less and less fabric whereas mastectomy bras are wider and have more fabric under the arm and cover the breast completely.”

Karlsen does warn over-enthusiastic fitters that although the aim of the fitting is to find the best solution for each woman, it is important to listen to them and take into account their comfort level with the products they are trying.

“She has to make the choice in what feels comfortable for her,” she said. “She’s going to be wearing it.”

Role in O&P

Post-mastectomy services offered within the walls of traditional O&P facilities are not a new phenomenon, but the sources we spoke with indicate that it is on the rise as a result of accreditation requirements.

“In the old days you would have a woman who was a survivor who felt so compelled to help other women that she would open up her own shop to do this which is a nice thing,” Karlsen said. “But it is a heart-based thing, not business-based.”

In an effort to better regulate these services and avoid fraud and other unprofessional activities, the Centers for Medicare and Medicaid Services implemented strict requirements to allow shops that offer post-mastectomy services to stay in business. As of September 30, businesses carrying post-mastectomy products needed to be accredited through an approved accreditation body.

“You had a lot of people that had lingerie boutiques. Those are the places that women would go because these would be owned by women who might have had a mastectomy themselves and they understood how to fit a bra with a prosthesis,” Simon said. “Some of them could not afford to go through the accreditation process and the certification process. We have seen our business with [O&P practices] increase within the last year.”

The challenge, Karlsen warns, is that conceptually, working with post-mastectomy patients is different from working with traditional O&P patients. Despite the challenge, she suggests that it is a positive move for any O&P facility.

“O&P companies are perfectly suited to expand to offer post-mastectomy [services] because they are already professional in their own right,” Karlsen said. “It really is to your benefit. The majority of [this market] is off-the-shelf. It isn’t as custom as with limbs because, to be honest, it isn’t necessary.”

Accommodate patients

To counteract the ambivalence encountered in the clinical setting and offer a personal experience, May suggests that practitioners offer a warm and inviting environment and always put compassion at the forefront of your services.

“You just have to remember what they are going through,” May said. “All you can do is offer your compassion and information.”

One way the Image Recovery Center excels in information gathering is by partnering with local organizations with the community.

“We work closely with the American Cancer Society with their Reach to Recovery Program. The program includes women who have been through breast cancer and are willing to speak to patients to answer any questions they might have,” May said. “I think it’s important for them to realize they are not the only one. There are survivors – there are plenty.”

Simon added that it all boils down to customer service and she encourages facility owners to put themselves in their patients’ positions and consider what they would be looking for in a facility.

“A big part of our goal at the hospital is to make sure the needs of our patients are met,” May said. “People just want to be cared for and they want to be taken care of.”— by Jennifer Hoydicz

For more information:

  • Apantaku, LM. Breast-conserving surgery for breast cancer. American Family Physician. Dec. 15, 2002. Available at: Accessed Sept. 3, 2009
  • Mayo Clinic. Skin-sparing mastectomy. Available at: Accessed Sept. 3, 2009.
  • Susan G. Komen for the Cure. Available at: Accessed Sept. 3, 2009.

Editor’s Note:
This story includes a small representative sample of individual companies and products. O&P Business News does not intend to promote individual companies or their products, nor to achieve an industry-wide consensus on the issue. Companies contacted in developing this story were randomly selected. Additional companies were contacted for information but had not responded prior to press time.

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