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Article

Male Patients With Breast Cancer: Addressing Needs Using an Educational Task Force

Joaimee Nagtalon Cutrone
Alexa N. Segna
Roberta H. Baron
CJON 2018, 22(4), 415–420 DOI: 10.1188/18.CJON.415–420

Background: Although breast cancer is most frequently diagnosed in women, it is also diagnosed in men in rare instances. Few studies have evaluated the needs of men with breast cancer.

Objectives: The purpose of this project was to identify gaps in the educational and psychosocial needs of men with breast cancer and to implement appropriate interventions for practice.

Methods: Based on the evidence, a Male Breast Cancer Educational Task Force was formed to evaluate existing resources for gender bias, and to develop additional resources targeted toward male patients with breast cancer. In addition, task force members identified several male patients with breast cancer willing to speak one-on-one with any male patients who received a diagnosis.

Findings: Following implementation, patients completed a survey to assess their satisfaction with the modified resources. Initial patient feedback demonstrated high satisfaction.

Male breast cancer accounts for less than 1% of all breast cancer cases in the United States (American Cancer Society [ACS], 2018). An estimated 2,550 men will be diagnosed with invasive breast cancer in 2018 compared to 266,120 women (ACS, 2018). According to the Surveillance, Epidemiology, and End Results (SEER) database, from 1973–2008, male breast cancer made up 0.6% of all breast cancers (Fields, DeWitt, Fisher, & Rabinovitch, 2013). Consistent with incidence in the United States, approximately 410 men were treated for breast cancer compared to 40,000 women at Memorial Sloan Kettering Cancer Center (MSKCC) from 1997–2017 (J.E. Howard, personal communication, December 5, 2017).

Background

Although the incidence of breast cancer in men remains low, it has slightly increased, from 1 to 1.3 cases per 100,000 men from 1975–2014 (ACS, 2017). The number of estimated deaths in men is 480 compared to 40,920 in women (ACS, 2018). This represents a slight decrease in men, from 0.4 to 0.3 deaths per 100,000 from 1975–2015, which is believed to be because of treatment improvements (ACS, 2017). The median age at diagnosis in men is 65–69 years old compared to 60–64 years in women. In addition, men are often diagnosed at a more advanced stage than women (Fields et al., 2013). Treatment options are similar for men and women and include surgery, radiation therapy, chemotherapy, and/or hormonal therapy. Although breast-conserving surgery may be an option in select cases, the majority of men are treated with mastectomy (Cardoso et al., 2018; Zaenger, Rabatic, Dasher, & Mourad, 2016). Most men with breast cancer are hormone receptor–positive and are treated with tamoxifen (Cardoso et al., 2018).

Because of the rarity of the disease, male breast cancer receives far less attention in healthcare settings, the media, and the general population than female breast cancer. Most of the male breast cancer literature focuses on risk factors, disease presentation, treatment, and prognosis. Few studies have examined the psychosocial sequelae in men; of those available, most are qualitative and involve small study samples. In contrast, numerous studies have been conducted on women with breast cancer. Common psychosocial issues in women include anxiety, depression, sexuality and body image changes, and difficulty coping (Matthews, Grunfeld, & Turner, 2017).

Gaining a better understanding of the educational and supportive needs of men with breast cancer can guide the development of appropriate strategies and interventions to better address factors male patients deem to be important. With this knowledge, patient education resources can be modified to ensure that they are gender neutral. The purpose of this article is to discuss the application of the evidence to address the educational and psychosocial needs of men with breast cancer.

Literature Review

A literature search using PubMed and CINAHL® databases was conducted from 2000–2017. The search was limited to the English language and included adults aged 19 years and older. The following medical subject headings (MeSH) were used: breast neoplasm male with the subheadings psychosocial factors, psychology, and nursing. Keywords included psychosocial support, information needs, patient education, and resources. Additional publications were identified from the reference lists of articles retrieved from the initial search results. A total of 12 articles, which specifically addressed the educational and psychosocial needs of men with breast cancer, were selected for inclusion.

Lack of Awareness

A significant lack of awareness and knowledge about male breast cancer remains in the general population and among healthcare providers (Al-Naggar & Al-Naggar, 2012; da Silva, 2016; Iredale, Brain, Williams, France, & Gray, 2006; Pituskin, Williams, Au, & Martin-McDonald, 2007; Quincey, Williamson, & Winstanley, 2016; Thomas, 2010). In a study of 28 men who had at least one maternal relative with breast cancer, but did not have the disease themselves, 79% (n = 22) were unaware that men could get breast cancer (Thomas, 2010). Iredale et al. (2006) surveyed 161 men with breast cancer and found that 60% (n = 97) thought it was a women’s disease and were shocked to learn their diagnosis. The pink ribbon campaign further reinforces the misconception that breast cancer is exclusively a woman’s disease (Robinson, Metoyer, & Bhayani, 2008).

Symptoms of breast cancer are similar in men and women and can include nipple retraction or discharge, ulceration of the skin and, most commonly, a painless breast mass (Fentimen, 2017). However, because of lack of awareness that men can get breast cancer, symptoms often go unnoticed or are ignored until the disease progresses to an advanced stage. In addition, healthcare providers often dismiss symptoms as non-worrisome because of their own educational deficiencies and clinical inexperience (France et al., 2000; Pituskin et al., 2007; Quincey et al., 2016).

Lack of Information

Men with breast cancer expressed a need for more information than what is typically provided to them (France et al., 2000; Iredale et al., 2006; Robinson et al., 2008). Some studies recommended having male-specific resources whereas others felt that the information could be incorporated into existing resources (Iredale et al., 2006; Quincey et al., 2016). Participants in the study by Iredale et al. (2006) reported that most of the information they received was presented to them verbally. When written resources were provided, the content often addressed issues specific to women, such as vaginal dryness and bra fittings. Participants also provided specific suggestions of items to incorporate, including post-mastectomy photos and information about treatment-related side effects in men. In addition, participants felt it was important to distribute pamphlets in primary care settings to increase awareness (Iredale et al., 2006).

Stigma and Body Image

According to Iredale et al. (2006), most men were reluctant to disclose their diagnosis to anyone other than their spouse or partner for fear of stigma and embarrassment over having a disease almost exclusively associated with women. Body image disturbances were not uncommon, particularly in younger men. Perceptions of a threat to their sense of masculinity led to feelings of isolation in participants (da Silva, 2016; Donovan & Flynn, 2007; Pituskin et al., 2007; Robinson et al., 2008).

Supportive Needs

According to a study by da Silva (2016), support groups specific to men with breast cancer are limited. However, most men were not interested in attending a formal support group and relied on their spouse or partner for emotional and social support (Iredale et al., 2006; Pituskin et al., 2007; Quincey et al., 2016). The men were amenable, however, to speaking with other men with breast cancer. Farrell et al. (2014) demonstrated that a telephone support group involving 11 men with breast cancer proved successful during a six-month pilot period, based on positive survey feedback and no attrition of group members.

Implementation

Based on the evidence, a Male Breast Cancer Educational Task Force was formed at MSKCC to address the identified needs of men with breast cancer and to develop interventions to enhance the experience of men with breast cancer throughout the cancer trajectory. The task force included six outpatient nurses from multiple breast cancer subspecialties in the surgery, medicine, and chemotherapy infusion departments, and was facilitated by a clinical nurse specialist. As outlined in the following sections, multiple interventions based on the literature were implemented to address the needs of this vulnerable population.

Patient Education

After identifying all resources at MSKCC that are provided to patients with breast cancer at various points across the care continuum, the task force members prioritized the immediate revision of the three patient education documents most frequently provided to men.

The existing mastectomy guide, About Your Mastectomy, was exclusively geared toward women. It covered topics such as preventing pregnancy and wearing surgical bras, and offered illustrations of women. Task force members opted to create a new mastectomy guide targeted toward men. Information from the existing guide was incorporated into a new resource titled, About Your Mastectomy for Men, which included content appropriate for men, such as wearing a postoperative chest wrap rather than a surgical bra. In addition, new graphics were created to ensure that illustrations depicted both men and women.

The second resource that was addressed was titled Exercises After Breast Surgery. The adaptation created for men was developed in collaboration with the physical therapy department and was named Exercises for Men After Mastectomy. Although exercises are the same for men and women, the men’s version was created to provide illustrations of men performing the various exercises, and it uses gender-specific language.

At MSKCC, clinical drug information used for patient education is provided by Wolters Kluwer. The task force members reviewed the drug information documentation and noted that the educational resource for the drug tamoxifen contained no information about common side effects in men. Because the resource is licensed and not owned by the authors’ institution, the ability to modify the content was extremely limited. However, feedback was provided to the publisher who agreed to add content about male side effects to the existing resource.

To ensure gender neutrality, the task force members proceeded to review each of the remaining institutional breast cancer resources to determine if any modifications were required. In total, 49 resources were reviewed, and the task force modified 19 of the documents. Modifications included incorporating male-specific information and adding or changing terminology to be gender neutral (see Table 1). 

To augment patient teaching, a binder of postoperative photographs of male patients was developed, and along with the new educational resources, a Resource Kit for Men with Breast Cancer was created. All outpatient nurses from the surgery, medicine, and chemotherapy infusion departments were educated about the contents of the kit. Nurses were encouraged to individualize materials for use based on what was most appropriate for their patients’ treatment regimens.

To further increase public awareness of male breast cancer, the task force developed a new pamphlet, About Breast Cancer in Men. This pamphlet includes information on risk factors, preventive measures, and common symptoms. It has been placed in the patient waiting areas to encourage caregivers to read and share it with friends and family. In addition, the pamphlet is used by the community outreach team and the public affairs department for distribution in the community.

Support Services

The literature review demonstrated that men expressed little interest in attending a formal support group but were amenable to individual discussion with other men with breast cancer (Iredale et al., 2006). To provide such support to male patients with breast cancer treated at MSKCC, the task force members, as well as social workers, identified several men who had breast cancer and who were willing to speak one-on-one with new male patients with breast cancer. Male patients were informed of this resource at their initial visit following diagnosis. Patients who declined this service were reassured that the option would remain available to them in the future. In addition, patients were also given a supplemental list of online resources that provide support and education to men with breast cancer (see Figure 1). Nurses were also encouraged to remind their patients at follow-up visits about the ongoing availability of the peer-to-peer male volunteers.

Results

In addition to the interventions implemented, task force members sought to obtain patient feedback about the modified resources provided. A brief survey was provided to men with breast cancer at their postoperative visit to assess satisfaction with the resources provided to them. Throughout a six-month time frame following implementation of the interventions, nine men were seen as new patients at MSKCC, with seven completing the survey. Feedback demonstrated high satisfaction with the resources (see Table 2). Although use of the peer-to-peer support program was low for the new patients (n = 2), this finding was consistent with results demonstrated in the literature. However, those patients who participated in the program found it extremely helpful.

Additional comments received during the survey period indicated that men found the resources relatable and inclusive. One patient said, “I was very pleasantly surprised to receive material that I can relate to as a man.” In addition, following participation in the peer-to-peer support program, one patient expressed interest in participating in the program from a mentorship perspective, stating that he would be a volunteer if needed. Finally, a third patient acknowledged that participation in the program helped him to cope: “I found it very comforting to speak with someone who went through this.”

The use of the postsurgical photos and offering of the peer-to-peer support program was not completed 100% of the time, identifying an opportunity for re-education and reinforcement with nursing staff.

Discussion

The Male Breast Cancer Educational Task Force identified gaps in the provision of gender-neutral care. The task force, guided by the literature, revised the MSKCC educational materials to be more inclusive, with the goal of creating a better treatment experience for the men with breast cancer. Nurses at other institutions can adapt the resources discussed in this article to best fit their needs, or they can incorporate a similar process to review and modify existing resources at their own institutions to ensure they best meet the needs of their patients. Nurses should feel empowered not only to identify specific needs of their patients but also to know that they have the influence, if not the responsibility, to implement change in practice.

Although the incidence of breast cancer in men is low, it is important for nurses to treat their patients with sensitivity and compassion when discussing difficult topics surrounding cancer care and treatment. Concerns of gender sensitivity and bias in oncology nursing practice do not necessarily apply only to diseases that are seen in primarily one sex versus another. Healthcare providers also should be aware that sex is not equal to gender. Although individuals are assigned the male or female sex at birth, their personal identification as he/him, she/her, they/them, and preferred gender may not be congruent with their biological sex (Joint Commission, 2011). Knowing that there is a wide spectrum of gender identities, including transgender patients who may or may not have undergone gender affirmation surgery, nurses are tasked with the complex role of providing comprehensive patient education in a welcoming, supportive environment, which does not exclude patients based on their preferred gender.

Conclusion

The review and modification process described in this article can be applied to all types of educational materials and psychosocial support services to ensure that they are inclusive of all genders to best serve the diverse populations seen in oncology care. By implementing similar practices, nurses can eliminate bias and create a provider–patient relationship based on respect, caring, and support (Aycock et al., 2017). Nurses can then further supplement their patient education materials to individualize teaching to target the specific needs of their patients.

The authors gratefully acknowledge members of the Male Breast Cancer Educational Task Force, including Marian Borriello, RN, CBCN®, Kelly Quinn, RN, MHA, CBCN®, Yelena Mavasheva, RN, CBCN®, and Ella Smelyanskaya, BSN, RN, OCN®; Chasity Walters, PhD, RN, and the staff of the Patient and Caregiver Education Program; and their inspiration for this initiative, Jack and Stephanie Gelman.

About the Author(s)

Joaimee Nagtalon Cutrone, BSN, RN, CBCN®, and Alexa N. Segna, BSN, RN, OCN®, are clinical nurse IIIs, and Roberta H. Baron, MSN, RN, CNS, AOCN®, is a clinical nurse specialist, all at Memorial Sloan Kettering Cancer Center in New York, NY. The authors take full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Mention of specific products and opinions related to those products do not indicate or imply endorsement by the Oncology Nursing Society. Cutrone can be reached at nagtaloj@mskcc.org, with copy to CJONEditor@ons.org. (Submitted December 2017. Accepted February 11, 2018.)

 

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