A Lifelong Connection: The Patient-Provider Relationship in Post-mastectomy Care
June 2021 Issue
Perhaps one of the most intimate relationships in healthcare is between post-mastectomy fitters and their patients. It is often a journey, a meaningful and mindful connection that begins around six weeks after the initial cancer surgery and can continue for years.
"A post-mastectomy patient is incredibly vulnerable and in the midst of a life-changing and often life-threatening battle," says Lesleigh Sisson, CFo, CFm, who began her O&P career in 1992. "The fitter is a compassionate partner to the patient in helping her or him regain a sense of wholeness and self."
The relationship is unique, she says. "It is quite intimate in that they are sharing details about their surgery, recovery, and life after [their diagnosis]."
Men Can Get Breast Cancer
While one in eight women will get breast cancer and receive post-mastectomy care, one in one thousand men also get the disease. Though their needs differ, men and women share some common bonds, Sisson and Jeanine Doty, RN, Cfm, CPO, say.
"Men also need emotional and educational support related to their cancer diagnosis and some have concerns about body image, but they usually do not have concerns about sexuality or are uncomfortable in the fitting room," says Doty, who has treated several men for breast cancer, specifically with post-mastectomy lymphedema, at her O&P facility.
"Most men do not need anything to replace that tissue or opt not to replace it, but if they do need something, they are usually offered a silicone pectoral implant," says Sisson.
Most patients who have undergone a mastectomy are nervous for their first appointments for the fitting process of a prosthesis—often more so than they were for their surgery or treatment, says Sisson, who owns and operates Prosthetic Center of Excellence, Las Vegas, with her husband, Ed Sisson, CPO. She is also founder of O&P Insight, a consulting firm for O&P practices.
"When they visit us, we are the ones who will help make them feel themselves again," Sisson says. "You have to gain their trust and respect very quickly and that usually happens once they've been fitted in their first breast form."
The relationship changes through the treatment process, says Doty, vice president of Active Life, headquartered in Glendale, California. Doty has been providing O&P patient care, education, and support for more than 35 years. "A strong relationship with their provider allows them to open up and share their emotions in a safe environment that is more positive and not focused on testing and treatment," she says.
Sisson says, "Initially, the patient may need significant emotional and educational support to navigate the steps of care as they are often still in treatment and unsure of their future. With the advances and improved outcomes in breast cancer treatment, patients are living longer, and the mastectomy fitter needs to be skilled in identifying the patient's current situation and needs."
A strong relationship between patient and provider is essential, concurs Shan Willoughby, marketing manager for Amoena USA, Kennesaw, Georgia. "A woman's mastectomy fitter is first an extension of her medical team, and secondly, and perhaps most importantly, her companion along her cancer journey and wherever it takes her," she says. "Mastectomy fitters often have to look beyond their training to support patients physically and emotionally."
It comes down to the level of trust as the fitter helps the patient regain confidence and self-esteem, Sisson says. "It can be a rewarding and fulfilling relationship for both," she says.
Without that strong connection, patients may not be comfortable enough to make the choices that align with their objectives. "Through communication and compassion, the provider can help the patient get to the heart of what they want and need at this point in their journey," Sisson says. "When the relationship is strong, we have the best possible chance to help a patient regain their confidence and ultimately thrive."
Evolving Over Time
The pandemic, as to be expected, has changed the rapport between mastectomy fitters and their patients.
Many fittings were done virtually or by phone in 2020, Sisson says. Now most locations have returned to in-person fitting. Masks, which are challenging for fitters' nonverbal communication, are still required, Sisson says. "Fitters need to be more aware of their eye emotions," Sisson says. "Smiling larger to show welcoming eyes. It's all about creating a comfort level on both sides. We follow CDC guidelines, wear masks and gloves, and sanitize. Beyond that, though, we do have physical contact with patients. We make sure they understand and are comfortable with this and know that we have taken all necessary precautions to keep them safe."
Virtual fittings emphasized the need for knowledgeable fitters, Sisson says. "Having had the opportunity to work with so many patients over the years, my compassion has been more and more reinforced," she says.
Breast cancer patients are often considered high-risk for severe infection of COVID-19, and as a result, patients were more cautious about coming into the facility to receive care physically, Doty says. "Many patients delayed care or utilized telehealth to meet their needs," she says. "Many patients opted to temporarily stop using a prosthesis and bras, as they did not leave their home, and as a result, they have a potential of a detrimental effects of asymmetry."
Sisson says a post-mastectomy care relationship should never feel clinical. "It's about bringing hope and healing," she says.
Doty agrees. "I see the relationship being longer over many years in response to the advances in treatments," she says. "Everyone's needs change as we age, and the mastectomy patient will need the support of the fitter to be there for each step. The patient may need to change to a front-closing bra, or one with more support or comfort."
A mastectomy fitter provides solutions to whatever may come after a woman's breast cancer surgery—even if it's years later, says Willoughby. One example she offers is if a woman requires revision surgery. The patient may decide to have explant surgery (removal of implants due to complications) or she may have a change in personal preference and decide to wear breast prostheses, she says. A breast cancer survivor may also have undergone radiation early in her journey, Willoughby says, but is still feeling the effects on her skin years later. "Her mastectomy fitter can assist her in finding bras or breast prostheses that are soothing and comfortable."
An Intimate Process
Depending on the surgeon, a breast cancer patient may be seen by a mastectomy fitter prior to surgery or immediately after surgery, but most often it is six weeks after the initial surgery or when the surgical site is healed enough to be fitted for mastectomy items.
"The mastectomy patient is often initially seen while still in treatment," Doty says. "And they are not only dealing with the emotional stress, but their changes in appearance with hair loss and a part or all of a breast, which affects one's body image and feeling of sexuality."
For the best fit and results, it is helpful to have the patient disrobe, Doty says. "The fitter has to be sensitive to each patient's comfort level of modesty," she says.
Care can begin prior to surgery, Sisson says, walking the patient through what to expect and establishing a relationship. After the surgery and the initial recovery stage, care continues through the point the patient is ready for a prosthesis. "If you can capture that patient prior to surgery, that is the ideal time," Sisson says. "They can come to you for their drain management garments, often called recovery garments, and a quick breast form education."
Measuring Personal Loss
Is the loss of a breast due to cancer more or less devastating, more personal, than losing an arm or leg?
Any loss of a body part or disfiguration can make a person feel incomplete, says Doty. "When we lose a part of ourselves, we lose a part of our sense of wholeness and part of our identity. However, sometimes society focuses on sexuality in the media and when the breast cancer survivor is constantly reminded of their loss, it can be devastating."
Sisson gives the example of a friend who underwent a bilateral mastectomy after several months of chemotherapy.
"She was physically and emotionally broken when she reached a point of moving forward without her breasts. It was important for her to try to feel whole and beautiful and supported," she says. "It was also important for her to know that every patient is different, and every journey is different."
Sisson says breast forms were a good solution until her friend was ready for reconstruction. "For some women, breast forms will be the long-term choice," she says. "It's all very individual."
Sisson believes limb loss and breast loss are devastating on different levels. "When we lose a part of ourselves, we lose a part of our sense of wholeness and a part of our identity. In addition to the physical battle, there is a very real emotional battle," she says. "Healing is needed for both the body and the spirit. Any cancer diagnosis is traumatic, especially when resulting in the loss of a limb or breast."
Sisson says the emphasis on women's breasts as a maternal feature and sexual objects can complicate the issue. "When a woman loses her breast to breast cancer, it can be traumatic for her as she navigates her new life in a world so mindful of women's anatomy, especially breasts."
The Business of Post-mastectomy Care
Our experts suggested that post-mastectomy care is an underappreciated service line that could be better supported by the O&P community.
"Many O&P locations do not realize the impact that post-breast-surgery patients can have on their business," Sisson says. "It is a service that needs to be recognized and embraced and definitely opens up a community of patients."
Doty says post-mastectomy care in O&P is not underappreciated as much as it is misunderstood by O&P practitioners. "With increased knowledge, the traditional O&P facility can add to their financial bottom line, offer a full line of care within their contracts," Doty says. "But more importantly they could work toward their mission of serving patients and their community."
Willoughby adds that the community of women who have undergone breast surgery continues to increase. There are quality products available to support them that they are unaware of, even from their physicians, products that are considered medically necessary and covered by insurance. "This is a revenue base that is uneducated and underserved," she says. Echoing Doty's assessment, Willoughby says, "By bringing in post-mastectomy products to an O&P practice, you're not only capturing these underserved market dollars, but serving the broader community."
What can be done to change the perception toward broader care for this population?
"Encouraging and educating business owners as to the value of adding mastectomy services is a first place to start," Doty says.
Willoughby agreed. "Begin with educating the medical community in your area on post-mastectomy options," she says. "Many surgeons do not understand the breast prosthesis market and will be amazed by the innovations. Women deserve to know all their options after surgery, so educate, educate,
More could also be done in partnering with physicians who specialize in treating breast cancer and support groups, Sisson says. "The people on the front lines with cancer patients could be better educated about options so they, in turn, can better educate their patients."
Education relating to post-mastectomy care could also begin in O&P facilities through exposure at conferences and trade shows as well as in trade publications, Sisson says.
"Knowledge is power," she says. "And knowledge in this arena can provide an increase in your community service offerings to help your patients regain their confidence and self-esteem leading to a fuller life lived."
Betta Ferrendelli can be contacted at firstname.lastname@example.org.