Even as cultural attitudes shift, LGBTQ+ individuals still face discrimination in health care settings. These communities tend to have higher incidence rates for certain cancers, and on top of these concerns, older individuals must also navigate issues related to aging and the ongoing pandemic, compounding the complexity of their concerns.

Research by the National LGBT Cancer Network has long demonstrated that the risks of being diagnosed with certain cancers are disproportionately higher in LGBTQ+ communities in comparison to their heterosexual counterparts. This research also shows that health outcomes for certain cancers are poorer in LGBTQ+ communities.

The reasons for LGBTQ+ health care disparities are complex but unequivocal, founded in many socio-economic and cultural factors. These include higher rates of smoking and vaping; more obesity in the lesbian and female bisexual communities; broader acceptance and use of illegal substances and alcohol, especially coupled with sexual activity, in the gay male community; and greater numbers of people living with chronic HIV/AIDS.

Poorer health outcomes can be attributed to a lack of training focused on the specific health care needs of LGBTQ+ communities, who may also be affected by homophobic and trans-phobic discriminatory language and attitudes, whether from a health care professional or as part of a health care system’s policies. Some patients may also be harassed, neglected, or denied treatment outright based on providers’ cultural or religious beliefs.

Non-disclosure of sexual orientation is especially prevalent in the older and senior LGBTQ+ communities, and can be compounded by minimal or complete absence of familial support. They may also lack culturally competent home care, rehabilitation, or nursing home services. According to recent independent surveys by the Human Rights Commission (HRC), the Centers for Disease Control (CDC) and Advocacy and Services for LGBT Elders (SAGE), there is consensus that LGBTQ+ persons affected by cancer have an increased risk of severe illness or death if diagnosed with COVID-19. 

For older and senior LGBTQ+ communities affected by cancer and the coronavirus, these disparities are magnified, resulting in greater experiences of fragility, distress, and hopelessness.

According to a report from the Centers for Disease Control and Prevention (CDC) released in February 2021, gay, lesbian, and bisexual people in the United States have higher rates of self-reported conditions associated with severe COVID-19 complications than heterosexual people. These include asthma, heart disease, obesity, kidney disease, stroke, and cancer. Within these populations, Black and Hispanic individuals are particularly vulnerable.

Older persons affected by cancer are less likely to have long-term and stable partnerships than their heterosexual counterparts. They are more likely to have reduced or absent familial interactions, a smaller social support network and a greater need for professional home care, versus unpaid care from a friend or family member. They also often have already experienced significant loss of peer relationships as a result of HIV/AIDS, which diminishes the possibility of creating future community. Those who do have strong relationships face issues associated with aging, including the death of partners and friends.

Finally, many older LGBTQ+ persons with cancer grew up with covert and overt messages that their lifestyles and/or bodies were wrong, unhealthy, and diseased. Having survived stigma and the HIV/AIDS epidemic, coping with another public health crisis has brought up feelings of disorientation and displacement. As stated by a participant of a support group for gay men with cancer at Cancer

, “I was rejected by my family. I have already survived one pandemic where I lost all those closest to me. [I] have been, for years, trying to live with cancer and now am facing another pandemic. I give up.”

As the world shifted, ever so suddenly, in March of 2020 as a result of COVID-19, mandates for sheltering in place, quarantining and social distancing left older LGBTQ+ persons in even greater isolation than before, with few outlets for support and assistance.

In the words of Movement Advancement Project (MAP), “As social isolation reaches crisis levels, financial resources dry-up, and the safety net is stretched thin, many … LGBT older persons remain estranged from family and religiously affiliated institutions on which they [relied] before and during crises. Consequently, we are witnessing an exponential increase in LGBT older people relying on LGBT aging organizations and others whom they trust to deliver life-saving help. And, as a result, the COVID-19 pandemic is uniquely impacting not only LGBT older people, but also the organizations that serve them.”

In a recent article on these aging populations and COVID-19, the Association of Health Care Journalists suggests ways to achieve better outcomes. These include education and outreach to address specific needs, working to make policies inclusive to chosen families rather than just biological ones, using correct gender and pronoun language, and understanding that medical inclusion. They call particular attention to the mental health of these individuals, who may be impacted by feelings of isolation and trauma during the pandemic.

Whether during the coronavirus pandemic or after, providers who wish to better serve older individuals in LGBTQ+ communities must first meet patients where they are. This means recognizing that care for an LGBTQ+ individual is not “one size fits all.” As with any underserved population, it is critical to welcome voices from LGBTQ+ communities to improve access to care, as well as to improve the quality of that care. There is no doubt that eliminating health care disparities is a worthwhile goal—and the journey to achieving it begins with openness and with humility today.

Human Rights Campaign. Research on LGBTQ People and the COVID-19 Pandemic. 2021. 

https://www.hrc.org/resources/research-on-lgbtq-people-and-the-covid19-pandemic

Schmidt, S. LGBTQ people face higher COVID-19 risks, but no one knows the true toll on the community. Feb. 17, 2021

https://www.washingtonpost.com/dc-md-va/2021/02/17/lgbtq-covid-cdc/

SAGE. SAGE’s COVID-19 Response. December 7, 2020. 

https://www.sageusa.org/sages-covid-19-response/

MAP, SAGE, and Center for Americna Progress. LGBT Older People, and COVID-19.May 2020. 

https://www.lgbtmap.org/file/2020%20LGBTQ%20Older%20Adults%20COVID.pdf

Seegert L. COVID-19 is hitting older LGBTQ adults especially hard. April 22, 2020. 

https://healthjournalism.org/blog/2020/04/covid-19-is-hitting-older-lgbtq-adults-especially-hard/

Articles

The reasons for LGBTQ+ health care disparities are complex but unequivocal, founded in many socio-economic and cultural factors. T

Cancer, COVID-19, and Aging in LGBTQ+ Communities

Ironically, the World Health Organization designated 2020 as the International Year of the Nurse and Midwife

...and then came a global pandemic. COVID-19 has shifted lives all over the world, but the movement has been especially pronounced for frontline oncology nurses. And as a result, this special group of committed professionals has learned to stand in the gap.

Oncology nurses enter the lives of patients and caregivers during a most difficult time — after a cancer diagnosis – therefore accepting equally difficult expectations for their care. While 46% of Americans reported feeling work-related stress,

 the percentage of nurses feeling the same is understandably much higher. It is this stress, which if unresolved, can deteriorate one’s physical and other dimensions of wellness — mental, social, and occupational.

During this COVID-19 pandemic, cancer caregivers are not allowed to accompany their loved ones into infusion centers during treatments or into hospitals during inpatient stays. This forced reality could be scary and isolating to both the oncology patient and caregiver. Therefore, oncology nurses, through their own psychosocial disturbances, are being called to stand in the gap between patients and families by providing unwavering comfort and reassurance to patients while keeping caregivers updated. This privileged position can come with its own conscious or subconscious stress for nurses, atop the amplified COVID-19 pandemic stresses that nurses bear in their personal and professional lives.

Now oncology nurses are experiencing high levels of stress, anxiety, post-traumatic stress disorder, and even burnout on top of new pandemic pressures. But most continue to uphold their commitment to providing quality patient care while remaining loyal to their colleagues by continuing to show up. This is counter to the traditional notion that added stress can push nurses to leave patient care and explore less stressful career endeavors, implicitly adding to the nursing shortage. Now more than ever, in light of COVID-19, we have to ensure oncology nurses have the necessary space, support, and tools to decrease stress and optimize their health and wellness.

To this end, nurse-led wellness mentorship initiatives could focus on empowering oncology nurses to implement mindset shift strategies that will transform their response to stressors and optimize their personal health and wellness. Utilizing a systematic method or framework to empower nurses to prioritize stressors, strategize plans to optimize their lives — a wellness mentorship initiative will provide support, accountability, and community by virtual facilitation and the integration of pre-recorded bite-size videos around promoting a growth mindset, resilience, stress management strategies, and wellness.

But today I challenge you twice over — to personally check in with an oncology nurse AND explore the idea of developing a formalized systematic way that can both support and empower nurses to overcome their own stress. There are some gap-fillers – waiting for YOU.

1. World Health Organization (2020). Year of the Nurse and the Midwife 2020. https://www.who.int/campaigns/year-of-the-nurse-and-the-midwife-2020 _Accessed December 3, 2020.

2. The American Institute of Stress (2020). Workplace Stress. https://www.stress.org/workplace-stress_ Accessed December 3, 2020. Global Wellness Institute (2020). What is Wellness? https://globalwellnessinstitute.org/what-is-wellness/ Accessed December 3, 2020

3. Ford, S. (2020). Global nursing body issues warning on nurse mental health during Covid-19 crisis https://www.nursingtimes.net/news/mental-health/global-nursing-body-issues-warning-on-nurse-mental-health-during-covid-19-crisis-30-04-2020/ Accessed December 3, 2020.

Now oncology nurses are experiencing high levels of stress, anxiety, post-traumatic stress disorder, and even burnout on top of new pandemic pressures. But most continue to uphold their commitment to providing quality patient care while remaining loyal to their colleagues by continuing to show up.

Oncology Nurses: Standing in the Gap

The COVID-19 pandemic has shifted the personal and professional lives of individuals around the world. Stress is an inevitable part of this shift. This is especially true for cancer caregivers, a population the National Cancer Institute calculated at 2.8 million — and growing – in 2016. Prior to the COVID-19 pandemic, 50% of cancer caregivers reported high emotional stress related to caregiving and 43% admitted to wanting help managing emotional and physical stress and making end-of-life decisions.

An unexpected cancer diagnosis disrupts the lives of patients as well as their caregivers. Cancer caregivers regularly provide support including, but not limited to, emotional support (98%), attending medical appointments (96%), help with decision-making (82%), coordinating medical care (79%), providing transportation (80%) and help managing finances (74%) while simultaneously dealing with their own emotions and stress.

Despite their essential role in a patient’s cancer journey, cancer caregivers are often excluded from the patient-centric resources and support services they encounter.

Oncology nurses and nurse navigators can play a pivotal liaison role between cancer caregiver and resources. Nurses usually provide episodic support during the patient’s visit; however, now more than ever, it is imperative that oncology nurse and nurse navigators are aware of sustainable cancer caregivers resources and support services. Empowered with a framework for assessing cancer caregivers for emotional and physical stress, Nurses can make a difference. The 

 is one simplistic way healthcare professionals can begin this work:

: Provide time and space to slow down on task focus activities

: While dedicating your full attention to the cancer caregiver, assure the caregiver that he or she is an essential part of the team and their well- being is important.

: Ask direct, open-ended questions about her or his feelings, struggles and support system.

 During every encounter, discuss, refer and encourage use of relevant support resources available to the provide cancer caregiver at that time.

Cancer caregivers are essential members of the health care team and can greatly impact the trajectory of a patients cancer journey, it is essential that they are provided the tools and services necessary to maintain their mental and physical health.

) Informal Caregivers in Cancer: Roles, Burden, and Support (PDQ®)—Health Professional Version

https://www.cancer.gov/about-cancer/coping/family-friends/family-caregivers-hp-pdq#_225

https://www.cancersupportcommunity.org/caregivers

Many Cancer Caregivers Report Feeling Unprepared for Caregiving Challenges

https://www.cancer.gov/news-events/cancer-currents-blog/2016/caregivers-needs-challenges

PEAR Method Can Help Assess Cancer Caregivers

Lauren Chatalian, LMSW, Women & Children’s Program Manager at CancerCare

At the start of the COVID-19 outbreak, it was unclear how cancer treatments would transpire and how the length of time the pandemic would be impacting those diagnosed with cancer. Individuals diagnosed with cancer have faced many obstacles in receiving care. While COVID-19 continues to present much uncertainty for many people, those diagnosed with breast cancer are faced with unique challenges in navigating continued treatment.

Because of the pandemic, people diagnosed with breast cancer may have experienced adjustments in their treatment regimen. Some may have begun neoadjuvant treatments due to postponed surgeries, while others have transitioned to oral treatments rather than receiving consistent infusion treatments at one’s treatment center.

 Clinical trials have also been adjusted with enrollment briefly paused. However, those who were in a clinical trial were able to continue to receive treatment (most likely delivered to one’s home)

. While many precautions have been put in place, many concerns have arisen in accessing necessary cancer care. Treatment approaches are on a case-by-case basis, as each diagnosis may exhibit different concerns

. It is important for patients to know that research continues and medical professionals are exploring ways to balance the concern of breast disease progression and COVID-19.

Unfortunately, due to COVID-19, many surgeries and procedures have been postponed. This specifically causes concern for individuals diagnosed with breast cancer who may have been scheduled for a lumpectomy or mastectomy. When someone is newly diagnosed with breast cancer and awaiting tumor removal, it may be difficult to comprehend the precautions necessary to ensure that surgical staff can continue to provide these services. While procedures have been termed elective, these surgeries may not appear to be elective for those diagnosed. They are still medically necessary and, in some cases, time sensitive even if they are not considered emergencies. Nevertheless, precautions must be taken. Surgical procedures and recovery may be different than initially expected due to COVID-19

Reconstructive surgery procedures may continue to be delayed until the pandemic is over. Preparing patients for these possible changes can help to alleviate uncertainty. Open communication and continued education about one’s diagnosis as well as COVID-19 is particularly vital during this time.

Individuals diagnosed with breast cancer may also be unsure if going into the hospital or treatment center poses a risk to their health. During a time of heightened anxiety, it is necessary to inform patients who they can contact if any concerns arise. For example, if it is possible for a patient to experience skin irritation due to radiation, and it could be useful to know ahead of time how to treat this or what specific circumstances require medical attention. If there is someone on the medical team that could be the point person for a patient to contact, this may offer a sense of comfort and reassurance throughout a breast cancer treatment, especially during COVID-19. There may be a nurse helpline through one’s medical insurance that could also be helpful.

Telemedicine, or telehealth, has become increasingly useful throughout COVID-19 to provide remote health care services. If patients express hesitancy, explaining the benefits of this option could provide a new perspective. Telehealth could offer a more flexible schedule, limit physical contact with others, and reduce the stress of traveling to and from medical appointments. In addition, explaining how to prepare for these appointments, as well as sharing what an appointment entails, may help to put a patient’s mind at ease. Step-by-step instructions for the video platform being used may be requested, and so healthcare professionals should consider having reading material on hand that patients can refer to, such as 

It may be helpful to consider a patient’s worries and stress. Throughout the pandemic, individuals diagnosed with breast cancer may experience increased feelings of isolation and a limited sense of community. Strong emotions when first diagnosed with breast cancer may be amplified throughout the pandemic. Oncology support staff may engage with individuals diagnosed with breast cancer regularly; however, this is a very new experience for many patients. Whether an individual is diagnosed during the pandemic or is navigating ways to continue treatment throughout these difficult times, patients are attempting to manage several stressors and may feel overwhelmed. It is imperative for patients to have a sense of security with their medical team to feel supported throughout his or her treatment.

As those impacted by a breast cancer diagnosis are faced with much uncertainty during COVID-19, financial strain may be an additional and powerful concern for many individuals. The loss of a job or loss of medical insurance poses increased stress for those in the cancer community. Connecting patients with the financial department, hospital social worker or patient navigator at the treatment center can help patients and families become aware of options available to them. Non-profit organizations, such as 

, may be helpful in connecting with financial resources, support services and educational workshops, including 

. During a time when people feel increased loneliness, connecting with others who may understand what he or she may be experiencing can be extremely beneficial. This could be through support groups, peer matching or individualized counseling. It is important to continue to address the emotional and practical concerns of a breast cancer diagnosis throughout one’s treatment and care, especially during a pandemic.

Citgez, B., Yigit, B., Capkinoglu, E., & Yetkin, S. G. (2020). Management of Breast Cancer during the COVID-19 Pandemic. 

Bauchner H, Fontanarosa PB. Randomized Clinical Trials and COVID-19: Managing Expectations. 

 2020;323(22):2262—2263. doi:10.1001/jama.2020.8115

Chia, C. L. (2020). Being a surgeon in the pandemic era. 

Journal of the American College of Surgeons

While COVID-19 continues to present much uncertainty for many people, those diagnosed with breast cancer are faced with unique challenges in navigating continued treatment.

Navigating Breast Cancer Care During a Pandemic

In today’s COVID-19 pandemic atmosphere, oncology patients and nurses are under added stress. When patients are admitted, the nurse caring for them needs information related to their cancer diagnosis readily available. Online apps can help them in their research. The patient can also log on to the app and view as well as engage with the platform.

I have had numerous patients who were otherwise healthy and then received a sudden diagnosis of cancer which unfortunately had already spread. The primary nurse caring for these patients is a wealth of information regarding their treatment plan. She/he can provide links to patients for these cancer apps. This could be generalized to patients across the board with different types of cancers as well.

As a nurse who has worked many years in the field, there is so much information available that patients can access. In the old days, there were very few resources for RNs, and I don’t remember that much typed written patient information.

On a personal note, I have worked with nursing students in their other role as CNAs (certified nursing assistants), and all their materials are online. In Miami, where I live, there is a Simulation Hospital at Miami Dade College, where nursing students have their virtual patient experience.

Chances are that patients have their phone with them. Using their phone to help patients learn about their cancer is a time saver and very convenient. Patients are overwhelmed with new corona virus information symptom information already. The elephant in the room is their cancer diagnosis. Nowadays current practice has patients tested for COVID-19 before being admitted to the oncology unit. Patients are alone in the hospital now due to visitor restrictions. Accessing these apps is another way they can maintain their connection to the world. These apps will help nurses and patients stay current with information related to their underlying diagnosis.

There are three apps relevant to this trend. They are: CareZone, Belong/Beating Cancer Together, and Cancer.Net. Mobile.

The app that has been downloaded one million times is CareZone (

). Patients can look at it on a phone or a browser and can input and access all their relevant clinical data on either format. There is a convenient storage area where they can list their lab data and meds as well as their current height and weight. Patients can also house a list of their chemo treatments. Clinical staff can also use it to access cancer treatment regimens. This app lets you store photos of meds as well.

) is being promoted as a means of locating support groups and clinicians who can answer patient questions about specific cancers. Family members can also tap into this resource.

In addition, if the patient wants to get information about clinical trials, this is the app for them. Another plus is that medical records can be housed there also, like CareZone. This is a free app and 250,000 people around the world have tried it.

https://www.cancer.net/navigating-cancer-care/managing-your-care/cancernet-mobile

) is the official app from the American Society of Clinical Oncology (ASCO). The goal of this app is to help the patient navigate through the world of cancer, at the onset of their journey, when their physician gives them the news to specific solutions. There are 120 different types of cancers it examines.

The app has a symptom tracker and helps the patient or family member in terms of organization. The patient can list his physicians, when their next appointment is, and all medications taken.

Technology has helped the fight against cancer in so many ways. This is another tool in the arsenal.

Cancer care and the information around it has moved online. 

The New Normal: Cancer Apps

Being a person with cancer can be challenging. Being a parent with cancer during a global pandemic brings added layers of challenge that may be more difficult to navigate without support. When a parent is diagnosed with cancer, young adult (YA) and child caregivers (CC) may take on different responsibilities and be considered a caregiver to the parent with cancer. While parents with cancer and their YA and child manage change in their own worlds, they may also experience physical and emotional changes with each other.

They may experience disruptions and changes in their life after their parent is diagnosed with cancer. During the coronavirus disease 2019 (COVID-19) pandemic, there are additional challenges being experienced by YA and CC that parents with cancer should be aware of. As schools have closed and circumstances change, the people and places that YA and children interact with, and how they interact, have changed. The time they now spend in and outside their homes have changed. YA and CC are taking on different roles and responsibilities of teaching themselves at home, being taught by a parent at home, preparing meals, added chores, activity cancellations and their parent’s cancer treatment. The multitude of changes that may be experienced when their parent has cancer during a global pandemic may influence different types of physical and emotional challenges.

Just as YA and CC do not have access to their typical support community outside of the home, the parent with cancer’s support community may have changed too. Parents often rely on the support of family, friends, and community members to help them manage challenges, both expected and unexpected, during treatment for themselves and their children. Due to the stay-at-home orders and isolation caused by COVID-19, parents may not want to risk people outside of their home having additional contact with them or their household members like they did in the past. This may lead to more responsibility being placed on the parent with cancer, another adult in the home or the YA and CC.

We see a change in dynamics in the home, including a shift in responsibility between household members when a parent has cancer. These are challenges the parent with cancer and their treatment team can look out for and discuss to address appropriately. Regardless of when the YA or CC is told about the diagnosis, children tend to worry about the survival of their parent

, have misunderstandings and delusions about cancer

. This can lead to the YA or CC defaulting to a few common coping strategies including distraction, keeping thoughts inside their own head, helping others, parentification and wishful thinking.

The parent with cancer may choose to address challenges on their own or through the use of outside support. Because it is already common for parents to lack the confidence and language skills to discuss their diagnosis and treatment with their child, it may be even more difficult for a parent to address specific changes and challenges in the home.

 This could lead to further misunderstandings, delusions and worries about the parent’s cancer for a child. Choosing outside support from a local cancer agency, social worker, nurse or other health care professional to talk to the child or YA can bring a feeling of normalcy about how the child is feeling about their parent’s diagnosis, and their experiences that they may not get from only speaking with their parent.

 Speaking with a professional for support from their treatment team including a nurse, social worker or other knowledgeable team member can also help the parent learn how to explain the complexities of cancer and their treatment in a way that their child can understand.

 we offer a number of services for patients with cancer and their caregivers. Counseling is available to those in New York and New Jersey, and online support groups and case management services to help patients navigate practical support challenges are available nationally. Cancer

 also offers the HOPEline at 800-813-4673, open Monday through Friday, with calls answered by master’s level oncology social workers who can provide support and guidance to those affected by cancer and their loved ones.

Krauel, K., Simon, A., Krause-Hebecker, N., Czimbalmos, A., Bottomley A., & Flechtner, H. (2012) When a parent has cancer: challenges to patients, their families and health providers, Expert Review of Pharmacoeconomics & Outcomes Research, 12:6, 795-808, DOI: 10.1586/erp.12.62

2. Semple, C.J. & McCaughan, E. (2013) European Journal of Cancer Care 22, 219— 231, Family life when a parent is diagnosed with cancer: impact of a psychosocial intervention for young children.

3. Thastum, M., Johansen, M. B., Gubba, L., Olesen, L. B., & Romer, G. (2008). Coping, Social Relations, and Communication: A Qualitative Exploratory Study of Children of Parents with Cancer. Clinical

Child Psychology and Psychiatry, 13(1), 123—138. https://doi.org/10.1177/1359104507086345

Being a parent with cancer during a global pandemic brings added layers of challenge that may be more difficult to navigate without support.

How to Support Patients With a Young Adult or Child Caregiver During COVID-19

Nurses, you may have noticed that some of your patients are younger than you. In many cases, patients are decades younger than the nurses taking care of them on the oncology unit. In today’s COVID-19 era, they are alone without family or friends to visit them. The internet is their connection to the outside world. Besides Facebook, Instagram, and Tik Tok to link them to the outside world, there are also cancer websites specifically geared for younger patients with cancer.

The first resource available is called stupidcancer.org (

). It calls itself a “lifeline” to teenage and younger adult oncology patients. It is a link to their cohorts that have cancer and the information given is tailored to their needs. They further characterize their mission as striving to stamp out the isolation that comes with cancer and bringing younger patients together. Part of their website offers a compilation of the best cancer blogs of 2020.

Stupidcancer.org also has their own blog, called Stupid Cancer (

). It offers a 3-pronged approach by linking patients to a cancer social worker, staff members and young adults who have conquered rare cancers.

Another blog is the YSC Blog (Young Survival Coalition) for younger female breast cancer patients (

). It delves into the realm of relationships, and sex while dealing with this disease. Another cancer organization is Breast Friends For Life. This group is concerned with the psychosocial effects of dealing with breast cancer. They are a nonprofit group in Georgia which has a Facebook page that young women can access (

https://www.facebook.com/breastfriendslagrange

Colon cancer is not for those in their 40s, 50s or beyond. It strikes young adults too. The Colon Club has a goal of having younger adults know their risk factors, in terms of family history and learning about symptoms and early detection (

). Furthermore, they want to encourage innovative solutions in their approach to this disease. The older patient mindset is a thing of the past for this group. As their website sates “Let’s talk poop”. They also have a blog called the Colon Club Blog (

https://www.colonclub.com/programs-support/blog

). Writers here are patients who have been impacted by the disease.

An award-winning website that has created a community approach is Planet Cancer. It has several ways for patients to connect with each other. They offer a retreat in person as well as online forums run by those who have fought in the trenches of this battle. It was founded by Ewing’s Sarcoma survivor Heidi Adams and is a huge presence on the web. (

). It has a nickname of “Myspace on prednisone.” It is now part of the Livestrong network founded by Olympian and cancer survivor Lance Armstrong. The website bills itself as the first online presence for young adults with cancer.

This list is not exhaustive by any means. It is meant to be shared with your patient who has time on their hands. Resources that helps them cope while recovering from surgery or while getting chemo are worthwhile.

Besides Facebook, Instagram, and Tik Tok to link them to the outside world, there are also cancer websites specifically geared for younger patients with cancer.

Resources for Young Patients With Cancer

Your patient had a mastectomy and chemotherapy and is recovering on the post-op surgical oncology unit. She has 1 or 2 JPs (Jackson Pratt’s) which are drained on a prn basis and a surgical bra. The physical part of her recovery is in progress, but what about body image issues?

A patient once told me that she was not concerned about turning grey. At that point in her journey, multiple rounds of chemo and radical surgery, hair color was not on the top of her to-do list. Does this ring true across the board for all patients with breast cancer? The jury is out on that one. Everyone has their own opinion on how important it is to look good after a mastectomy or a prophylactic double mastectomy for a BRCA 1 /2 positive patient.

A major drug store chain, Walgreens, has their own approach to this dilemma. Their program “Feel More Like You” has beauty consultants available to help patients deal with issues such as dry skin and hair loss after chemotherapy. These consultants also are familiar with battling the brutal effects of being in the sun as well as nail changes of the hands and feet. In Florida, sun damage is a major concern. Couple this with a mandatory face mask due to COVID-19, and you have a challenge for this patient.

There are also pharmacists ready to help patients cope with the effects of chemotherapy such as the classic adverse event of nausea and emesis, as well as skin rashes, dry mouth and mouth sores. Incidentally, the “Feel More Like You” program was created between the resources of the Cancer Support Community (cancersupportcommunity.org) and “Look Good Feel Better”

There is a program called “Battle Beautifully” which is a podcast dealing with the diametrically opposed concepts of beauty and cancer. Currently, there is a five-part series which Walgreens has created to help cancer patients. The first episode looks at the concept of beauty. Episode two features an interview with noted TV broadcaster Joan Lunden who discusses her battle with breast cancer. Episode three has a visit to Gilda’s Club which highlights patient coping mechanisms. Finally, episode four discusses mouth problems and episode five rounds out the series with a discussion on tattoos. There is a visit with a breast surgeon and two tattoo artists who gives insight to this trend among breast cancer patients.

As a nurse and patient advocate, helping the patient find the right self-care balance after breast cancer treatment is vital to helping a woman maintain her self-image. Looking in the mirror should not be a stressful experience and these issues can be mitigated with knowledge.

Helping Breast Cancer Survivors Deal With Body Image Issues

Breast cancer is often perceived as a woman's disease, as most breast cancers that are diagnosed in the U.S. are in women. Diagnoses in men contribute to less than 1% of cases.

 Although male breast cancer is rare, health care providers must be well-informed of the psychosocial impacts of the disease. An understanding of the physical and emotional effects specific to men is crucial in the development of patient-centered cancer care.

Men with breast cancer often face unique challenges. This diagnosis can be shocking, and may bring about feelings of isolation, shame, and emasculation. A lack of awareness of male breast cancer, along with responses from others, contribute to these emotions. As health care providers, actions can be taken to better understand the experiences of male breast cancer patients and ensure an inclusive and supportive environment.

It is important to identify the factors that reinforce these feelings of distress. Stigma is commonly expressed as one of the most stressful barriers to receiving care and support for men with breast cancer. This stigma can be experienced in many settings, including within the cancer care system and in existing social surroundings. Studies have shown that breast cancer care focuses on female patients, leading men to feel dismissed. Men report being mistakenly called by female names and prefixes in waiting rooms and will most often be the only male breast cancer patient in the room. This brings about feelings of embarrassment and of being an outsider.

In social settings, men often hesitate to disclose their diagnosis due to fear of how others will react. Many times, close family and friends are the only trusted sources of emotional support, and these chosen few are often equally as shocked by the diagnosis as the patient. Other times, people do not know how to deal with the diagnosis and will retreat from the patient. Men will often feel isolated and have few outlets for support, which leads to social exclusion and ongoing shame.

There are many studies that demonstrate the emotional impact of mastectomy and treatment side effects. However, body image is often a topic reserved for supporting women. Not enough research is designed to understand the effects of scars and altered appearances in men after this surgery. Men may associate their own bodies with a masculine identity. A diagnosis of breast cancer, in combination with visible scarring to the chest area, may contribute to feelings of emasculation and psychological trauma. Additionally, hair loss is not equally addressed. For men and women alike, hair loss contributes to an identity of being sick. Both may express stress due to this side effect of treatment, but in different ways. For example, men may lose facial hair, a typical masculine trait, while in chemotherapy treatments. This could further exacerbate any feelings of emasculation.

These negative perceptions of body image and personal appearance could cause distress for many patients.

In order to reduce the impact of these stressful events, studies have shown there are solutions to provide a more comprehensive approach in the health care setting. More awareness and equality of cancer care will decrease shock and shame. When breast cancer is not seen as only a woman’s disease, negative outlooks decrease. Publications handed to patients could be gender-neutral or contain aspects for both genders.

Discussions about treatment side effects, the impacts on quality of life and concerns about body image that are specific to men will promote an inclusive environment.

 Health care providers play a significant role in the patient’s perception of the disease. Knowledge, attitude, and office atmosphere contribute to better psychological outcomes.

Stigma, feelings of exclusion, and other stressors will impact overall well-being and functioning. Health care providers who can identify these factors will better be able to provide much-needed emotional support, improve quality of care and provide resources tailored to their patients’ needs.

In addition to a well-informed health care team, men with breast cancer would benefit from professional counseling and peer support. Support groups have long demonstrated improvements in quality of life to those with breast cancer, and that remains true for male breast cancer patients. In one study, most men agreed they would benefit from speaking with another man diagnosed with breast cancer.

 Providers who conduct distress screenings and share referrals to resources will have a significant impact on their patients, while meeting their various psychosocial needs.

Even though male breast cancer is rare, all providers can remain conscientious and promote awareness in their practice. Together, we can collectively aim to reduce experiences of stigma and shame and decrease feelings of isolation and fear. Overall, this will have positive effects for male breast cancer patients and generate the respect and support all patients deserve.

Breast Cancer Facts and Figures 2019-2020. 

https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2019-2020.pdf

Midding W, Halbach SM, Kowalski C, Weber R, Würstlein R, Ernstmann N. Men with a woman’s disease: stigmatization of male breast cancer patients—a mixed methods analysis

2018:12(6) 2194—2207. doi:10.1177/1557988318799025

Robinson JD, Metoyer KP Jr, Bhayani N. Breast cancer in men: a need for psychological intervention. 

Journal of Clinical Psychology in Medical Settings

. 2008:15(2):134-139. doi: 10.1007/s10880-008-9106-y

Ernst J, Mehnert A, Dietz A, Hornemann B, Esser P. Psychological distress in men with breast cancer. 

2006:24(1):95-101. doi: 10.1200/JCO.2006.10.064

Williams BG, Iredale R, Brain K, France E, Barrett-Lee P, Gray J. Experiences of men with breast cancer: an exploratory focus group study. 

89(10):1834-1836. doi: 10.1038/sj.bjc.6601305 

Health care providers play a significant role in the patient’s perception of the disease. Knowledge, attitude, and office atmosphere contribute to better psychological outcomes.

Identifying the Needs of Men With Breast Cancer

COVID-19, also known as the coronavirus, has impacted our lives in some way be it mentally, physically, or spiritually. While data continues to emerge on COVID-19, statistics are showing that this is yet another disease that yields disproportionate outcomes in African Americans, as well as other vulnerable populations as it pertains to burden of disease and mortality.

In recent data reported from New York City, one of the hot spots for COVID-19, mortality rates among African-Americans was higher (92.3 deaths per 100,000 population) compared to that of Whites (45.2) or Asians (34.5).

In Illinois, my homestate, 58% of Cook County deaths from COVID-19 were from African-Americans despite the population being comprised of 23% African-Americans.

 One might ask, why is this the case? While there are still a lot of unknowns about this virus, we do know from our previous experiences with health inequalities that patient factors such as, gender, socioeconomic status, age and access factors, such as, geographical location and institution all contribute to disparities. Certain medical conditions such as, asthma, cardiovascular disease, diabetes and chronic kidney disease to name a few, are more prevalent among African-Americans, also increases our risk for severe COVID-19. When combining all of these factors they heighten the health risks and poor outcomes seen in African-Americans diagnosed with COVID-19.

It has been stated that many African-Americans are asymptomatic when presenting to the hospital and/or clinic and those with symptoms frequently complain of fatigue, malaise and headache which are often mild in nature and are often dismissed by the healthcare provider and the patient; therefore making this virus a new, “silent killer” among African-American communities.

As nurses, we are at the frontline of delivering and coordinating patient care. Our active participation in the health care system can improve health outcomes and reduce health disparities seen in African-American patients. We directly influence patients’ health status through our hands-on care and indirectly by engaging patients in their treatment. I stand with you and encourage you to continue to advocate for your patients’ right to be tested to decrease the mortality seen with this virus as we all are an integral part of the team and can make a difference in combating COVID-19.

Center for Disease Control and Prevention (2020). Coronavirus (COVID-19). Retrieved on, April 30, 2020 from, 

https://www.cdc.gov/coronavirus/2019-ncov/index.html

As nurses, we are at the frontline of delivering and coordinating patient care.

Contributors