Receiving a cancer diagnosis is less common for adolescents or young adult (AYA) compared with young children or older adults. AYA patients often report that when they look around the waiting room at their treatment center, or even in their local patient support group, they tend to see patients either half or double their age. This experience can result in feelings of isolation, anxiety, and depression.

COVID-19 quarantine mandates exacerbated these emotions by forcing AYA patients, an already underrepresented population within the cancer community, to physically isolate, cutting them off from the few resources that were available to them. This lack of peer support resulted in many AYAs relying on alternative ways to connect with one another, such as social media.

In the past decade, there has been a significant rise in the use of social media. Apps like Facebook, Instagram, and TikTok, have continued to garner attention over the years, but over the course of pandemic, these platforms became even more important. Many individuals turned to these platforms to stay connected when they could not physically see family and friends. Social media apps proved to be a place of community for many— particularly for AYA patients navigating a cancer diagnosis.

A recent study completed by Memorial Sloan Kettering Cancer Center set out to identify the primary needs unique to AYAs throughout their cancer care experience. The participants of the study were between the ages of 15 and 39 and had been treated in either MSKCC’s medical or pediatric oncology unit. The results of the study revealed that the most common theme amongst the participants was the feeling of social isolation and the desire to connect with peers throughout the course of their care.

 A participant recounted how a friend, who had undergone leukemia treatment in her twenties, was surprised to hear someone else her age was similarly diagnosed. Her experience had felt so isolating. ‘You are the only other person I’ve ever met who is my age who has gone through something like this,’ she had said. Unfortunately, this experience is incredibly common. There are very few treatment centers that offer resources, groups, or programs dedicated to AYA patients. Furthermore, at the time of a cancer diagnosis, AYA patients are typically at the point in their life cycle in which they are completing their education, becoming independent, engaging in self-discovery, and starting a career or a family of their own. It is difficult to navigate these milestones under normal circumstances—when these changes are combined with the challenges of a cancer diagnosis, the result is a unique experience that can only be understood by other AYA patients in this position.

Social media created a platform for AYAs navigating these specific challenges to share their experiences, emotions and perspectives in a way that hasn’t been done before. Users are given the opportunity to disclose their diagnosis story, their experiences with healthcare, side effects of treatment, survivorship, confronting their mortality and many more topics. Most importantly, by using hashtags such as #Cancer or #AYACancer on Twitter or #Cancertok on TikTok, AYA patients are able to attract other users that these hashtags might apply to. As an AYA cancer patient, finding someone on social media that is going through something similar can significantly reduce feelings of isolation and reiterate that they are not alone.

Kasey Altman, a 26-year-old that was diagnosed with Stage 4 Rhapdomyosarcoma in 2020, has accumulated 58.3K followers on TikTok since she decided to share her story. She has gained her following by posting candidly about her metastatic diagnosis, raising awareness about the unique challenges associated with AYA cancer, and engaging in advocacy efforts. Her posts highlight the ups and downs of treatment, managing side effects, and self-care tips for those that are newly diagnosed. When asked about how social media has impacted the AYA cancer community, Kasey stated, “My main thoughts are centered on how excruciating it is to suffer in silence. TikTok makes it less lonely. It's a community filled with fiercely loyal followers and people who seem to genuinely care about the well-being of others.” This kind of support, empathy and level of understanding is crucial to healthy coping.

In another study, the use of social media was explored in the advanced cancer experiences among AYA patients. It was determined that digital technologies have been used as a primary means of support. Participants of the study, ages 14-25, indicated that social media and the use of video games allowed them to meet others who are facing similar challenges. It also allowed for them to stay connected with friends who they might not be able to see in person as a result of treatment.

 These types of connections are integral, especially for individuals that might be immunocompromised. Many AYAs receive their treatment in-patient, or even have to stay in the hospital for weeks at a time if they are recovering from a procedure like a stem cell transplant. AYAs also need the same access to support after completing treatment. A common misconception is that once treatment ends, life picks back up as normal. However, that is far from the truth. Adjusting to post treatment is actually when the peer connection is most important.

Julie Kramer, a 31-year-old that was diagnosed with stage 4 Synovial Sarcoma in 2014, stated, “Instagram became a huge resource for me during, but mainly after, cancer to find fellow AYA patients who not only had the same cancer, but more importantly related to such similar struggles as I did and currently do. I cannot express how helpful it is to my mental health and well-being having the online cancer community as an outlet to meet, engage and vent to fellow patients and survivors.” Having access to social media creates a pathway to connection, even if patients are physically alone while in treatment or are navigating post treatment.

Social media and public disclosure are not for everyone and that is also okay. Many AYAs report that social media can actually increase feelings of isolation and sadness when they see posts from healthy peers going about their day to day lives. It is essential to encourage patients to check-in with themselves prior to engaging in social media activity to ensure that it is the right source of support and connection for them. It might also be helpful for patients to set boundaries around their social media use to ensure it is used appropriately and productively. If there are in-person or virtual AYA specific groups or programs offered at one’s treatment center, it can be helpful to supplement both sources of support.

If an AYA patient you know is in need of support, please call CancerCare’s HOPEline to speak with an oncology social worker at (800) 813-4673. Cancer

 offers free emotional support services, limited financial assistance, case management, educational programs and workshops for individuals impacted by cancer, but particularly for AYA patients.

Atkinson T, Avutu V, Barnett M, Glade Bender J, Lynch K, Tap W, Vera J. Psychosocial needs and preferences for care among adolescent and young adult cancer patients (ages 15-39): a qualitative study. 

Barton K, Frazier J, Rosenberg A, Steineck A, Walsh C. Seeking virtual support: social media in the advanced cancer experience among adolescents and young adults. 

https://doi.org/10.1016/j.jpainsymman.2021.01.102

Articles

The rise of social media platforms has helped foster a community for adolescent and young adult patients with cancer.

How Social Media Helps AYA Patients With Cancer Find Support

My sister was born with heart disease. When 6-year-old Jean died, I was almost 5 years old.

Being thin helped keep her alive. The less she weighed the less work her heart had to do.

In my long career as a social worker, I have found myself in demanding settings. For the past 5 years I have worked with patients with lung cancer. Often my patients required needs such as home hydration, oxygen, and hospice–all of which required an immediate response. Usually, I scarfed down pizza, chips, or whatever was at hand. Working from home during the COVID-19 pandemic allowed me to take the time to cook and eat well – which is important for people with lung cancer. It also reminded me of Jean, and how her illness and death influenced my decision to pursue social work as a career and my love of cooking as a hobby. Every working hour challenges me to find supportive solutions for clients. Here is a glimpse into the life. 

My husband, Agustin, brings me coffee in bed and a second cup to assure I get up. He likes to talk and tells me about his day as he cleans the kitchen, sweeps all the floors, cleans the litter, feeds our cat, takes out the garbage, pays the bills. He likes to laugh and is opinionated. If I tell him I disagree with him he replies with, “Well I agree with me!” He doses out laughter and leaves to work at 5:00 am while I head to the kitchen to bake a crusty no-knead bread found on the package of King Arthur’s unbleached flour.

 I call Cindy, a 68-year-old lawyer and single mother of her 32-year-old son, to discuss end-of-life choices. Cindy had worked in the NYC courts near Ground Zero, and I am guiding her son as he files a claim with the 9/11 fund. Cindy’s biggest regret in dying is not being present to see her son’s life unfold, but rather than dwell in lament, she chooses to meticulously prepare. She has found an apartment for him in her building so he will be nearby and safe. She has finalized her will, documents, instructions, and passwords. She tells me how facing her own death brings up memories of her teenage friend who was 1 of the 4 students who was fatally shot at Kent State.

I wonder if this experience influenced her choice to become a lawyer the way my sister’s death influenced me.

 I call Marie, a 46-year-old, recently diagnosed, mother of 2. Her oncologist thinks she needs a psychiatrist and anti-anxiety medications. I have never met Marie, but I know she is an NYU oncology nurse, a colleague, and a patient. Her diagnosis reminds me that anything can happen to anyone. I ask her about her sleeplessness, panic attacks, past psychiatric history, and if she is suicidal. Marie explains that she had a few bad days but has bounced back. She feels no need for psychiatry or medications though she might consider psychotherapy in the future. She credits her oncologist and her family for bolstering her resilience; both her mother and aunt are nurses. I explain that her resilience is an inner resource, sometimes referred to as a “muscle” that can be strengthened with use.

I ask how she is managing financially and at work. She is on disability but hopes to return to nursing. “I can review charts,” she muses, “but I am best hands-on. Maybe I can help by telephone. After all I have the perspective of an oncology patient and nurse.” I am glad that Marie said “patient” before “nurse,” as her job now is to be a patient. Careful not to treat her differently than other patients, I let her know that support groups, and massage and acupuncture services are available, and I give her my contacts.

 I set up a virtual meeting to speak with the social work intern slated to start field placement in the fall. Interns do important work. For 3 years I focused my interns on building a support network for caregivers—now a vibrant and valued support group facilitated by a colleague. With lunch on my mind, I dump split green peas in a pot with water, boil them for 2 minutes, and set aside.

Back at my desk with headphones on, I welcome the intern as she appears on the screen. I describe 2 programs to be developed. First, a virtual memorial for families to honor their loved ones, our patients, who died. Prior to the pandemic, the program was live and included a harpist. The plan is to rework this tribute into a Zoom format. The second program is aimed at identifying and distilling the needs of younger people, often women, with lung cancer, a growing demographic.


I don’t want the student to think lung cancer has only dire outcomes. I explain that though death often occurs, immune and targeted therapy have yielded gains in longevity and hope abounds. The lung cancer support group she will facilitate includes a college professor, an artist, and a dancer—9, 10 and 11 years after a stage IV diagnosis.

 Edna, a 43-year-old, Orthodox Jewish, mother of 7, arrives at the clinic by ambulance. She refuses hospice; her husband explains that everyone they knew who had hospice had a dire outcome and that there aren’t any good hospices in their New Jersey township. I explain that hospice does not hasten death but helps an individual live as long as they can as well as they can. Studies show that patients with lung cancer on hospice may have 4 months added to their lives. I call local hospices to assess their potential, but since she prefers not to enroll, I begin the herculean task of arranging end-of-life care in her home with her doctor: home IV fluids, a visiting nurse, caregivers, Foley catheter, a hospital bed, morphine, and oxygen. Hospice would have been the easy way, but this is not about the easy way, it is about the patient’s way.

Her oncologist, Dr. Chachoua, like a conductor, orchestrates the timing of multiple home treatments while nurses, respiratory therapists, pharmacists, and home care workers text and call him night and day. Family have been unable to visit their loved ones in the hospital due to COVID-19 restrictions making her care at home a treasure.

The oncologists’ hard work allows many patients to live and prosper. But, despite their best efforts, sometimes patients fall like combat soldiers, one after another. We turn to each other for help coping with what at times feels like insurmountable loss. Prior to the pandemic, Dr. Rosenthal, the chief psychiatrist, and I co-facilitated support groups for the oncologists, nurse practitioners and infusion nurses to help process the many deaths and difficulties they face. We could not keep it up during COVID, when it was needed most.

During the Lung Cancer Research Foundation’s awareness walk, staff, patients, caregivers and families of deceased patients mingled as we walked over the Brooklyn Bridge and back. As health care professionals, we develop close bonds not just with those undergoing treatment but with the caregivers. We have a common mission: to keep the patient well. When a patient dies, not only is the patient gone but the caregiver is gone, too. An awareness walk for lung cancer research is an opportunity to keep in touch with families who remain important to us.

 I keep thinking about how to help Jenny, a lonely octogenarian and retired professor, who suffers with progressive disease and cognitive decline. After her doctor recommended hospice, we talked about her life, death, fears, and regrets. She acknowledged that she suffers from paranoia and hoarding, behaviors that have distanced her friends, family and loved ones. Early in the pandemic, I presented a workshop about coping with loneliness as part of the hospital’s Community Outreach program. The depth of damage loneliness can do to a person’s physical and emotional health is enormous. COVID-19 and cancer both increase a person’s risk of becoming lonely—as does hoarding.

Jenny was such a fashionable dresser and so intelligent and so kind that I never suspected hoarding behavior. Her cognitive decline is difficult to detect in conversation but noticeable in her procrastination. She has money to hire help and the contacts of vendors to repair, clean, and organize her home, and her landlord is eager to help, yet she can’t act. I mull over making an Adult Protective Services (APS) referral. APS is a government program designed to protect the elderly from abusers as well as from themselves if they are putting themselves at risk. Hoarding and being unable to fix her apartment and accept hospice all put her health and life at risk. Plus, she could use help managing her money.

I try to determine if involving APS is the best move. Though APS can be called without a client’s permission, given Jenny’s paranoia, I want her to agree. Jenny has always put me first when we speak, asking how I feel and thanking me for helping her. I have never been able to implement anything to help her. I listen and offer encouragement, but I do not feel we are gaining on the goal to arrange for a hospice referral.

I feel a sense of urgency. I don’t want her to be alone without help or die without pain control.

 It is important to include nature and the outdoors into my day for physical and mental health. I know this because a few years ago I had a heart attack. 

Overwork, eating poorly, and lack of exercise is a risk of this work and I worry about my colleagues who don’t put themselves first. I have a psychologist who specializes in physician burnout on speed-dial. For lunch I pack a sandwich and head to Central Park. I watch roller skaters dance to house music. Salsa dancing is in full swing at the Bethesda fountain. I come to a bench with a former support group member’s name etched on it. A musician once shared with the support group the importance of drumming—how the tap-tap tapping was much like listening to a heartbeat. 

I sit and remember Sigbritt, an octogenarian Swedish immigrant who spoke 6 languages and had raised a family. She had lived well for almost 10 years with a diagnosis of stage IV lung cancer. Sigbritt was blind and used a cane. Neil, a younger support group member, would jump up to help her when she entered the room. I told him privately, “Thank you Neil, for helping Sigbritt with her blindness.” Neil incredulously responded, “She’s blind?” He was just being gentlemanly.

I consider my career choice and what it has meant. The goal has been to make people’s experience with cancer as good as can be. A patient’s wife wept as she told me how his oncologist, Dr. Sabari, fixed her husband’s hair, sat beside him and whispered, “You are a good man. Your life was important.” Dr. Sabari’s expert medical care wrapped in compassion gave this family solace and courage. When my own life is ending, I will draw upon the strength, humility and resourcefulness I have witnessed in colleagues, patients and families to guide me. Yet, if it weren’t for the early loss of my sister, I might have never been motivated to be there for others at the end of their lives.

An oncology social worker reflects on a day in the life and how the memory of her sister motivates her to tackle her work.

Recipe For Disaster

The United States has an extensive history of immigration. However, several studies have demonstrated that people face health disparities because of their immigration status.

According to the center of immigration studies, in November of 2021, the immigrant population is made up of 46.2 million documented and undocumented individuals. This represents 14.2 percent of the population in the United States.

Undocumented immigrants are foreign-born individuals who have migrated to the United States without authorization.

Contrary to negative connotations, political restrictions, and immigration policies, approximately 50% to 70% of the undocumented immigrant population pay federal and states taxes. Despite their contributions to the American economy, the undocumented population continues to face discriminatory policies.

 These disparities are particularly felt by those who have been diagnosed with cancer and their loved ones. These existing policies affect undocumented cancer patients emotionally, financially, physically, and socially.

Disparities Within the Health Care System

The Affordable Care Act is a federally funded initiative implemented in 2014 to allow more affordable healthcare options for millions of Americans. However, this initiative excludes many the undocumented population.

Research shows that those who are undocumented are rarely able to attain full insurance coverage, whether it is private insurance from the marketplace or Medicaid. Multiple states have expanded Medicaid policies to cover service gaps for undocumented individuals (Emergency Medical Treatment and Active Labor Act), but this extended policy varies by state and solely covers emergency services. This affects individuals who are diagnosed with cancer for any type of treatment. Individuals who seek emergency services due to a diagnosis may receive emergency medical attention; however, it typically does not cover cancer treatment costs.

Thus, those who are undocumented and uninsured usually do not seek medical assistance, or delay seeking care, for several reasons. Health insurance is closely linked to the number of times individuals seek medical assistance: this includes general check-ups, annual physicals, and cancer screenings.3 Cancer screenings are typically delayed unless or until individuals experience extreme discomfort or a medical emergency. Undocumented individuals are likely to live with pain and discomfort in order to avoid receiving high medical bills. They may avoid seeking medical attention or put off annual physical exams to avoid fees and copayments.

A delayed cancer diagnosis affects the prognosis and types of treatments that are available to patients. The quality of treatment is also compromised, as undocumented populations are more likely to be offered a less effective, yet more affordable, treatment as opposed to the best available treatment that is more expensive, that is linked to a higher survival rate.

Undocumented individuals who are facing a cancer diagnosis are at higher risk of struggling with the financial burden of cancer treatment. Due to the nature of diagnosis and treatment, most patients with cancer who are undocumented are unable to work, resulting in ineligibility to receive federally funded benefits such as extended family leave, paid time off savings, paid sick days, short-term and long-term disability.

Furthermore, undocumented patients with cancer face traumatic experiences that cause stress levels to elevate—affecting their mental health. Some of these traumatic experiences include discrimination because of immigration status, stigma related to status, language barriers, and racism. These traumatic experiences also affect the likelihood of patients seeking medical assistance for their cancer treatment or diagnosis.

Often undocumented individuals who may have a cancer diagnosis delay seeking medical assistance because of fear of deportation. It can be difficult for undocumented individuals to seek support as oftentimes they are the ones supporting their families­—financially and emotionally.

These experiences can be isolating for patients and are correlated to depression, anxiety, posttraumatic stress disorder, and other mental health conditions. Higher stress and mental health conditions cause a direct impact on patients' physical health as well as response to treatment and survivorship.

Helping Undocumented Patients Navigate Health Care Disparities and Impacts

Although there are plenty of challenges and barriers that prevent undocumented cancer patients from receiving adequate treatment, support, and information, there are a plethora of ways to help this population navigate challenges.

Cultural humility is defined as “a lifelong process of self-reflection and self-critique whereby the individual not only learns about another's culture, but one starts with an examination of their own beliefs and cultural identities.”

 By reflecting one's own core cultural identity and privileges one may hold, it allows the health care worker to empathize with structural and emotional challenges their patients may face. It also assists professionals with the emotional capacity of advocating for patients or assisting them with the tools for advocating for themselves.

Faith and spirituality are also helpful factors at the micro-level that assist with coping skills and how individuals react to stressors and mental health challenges. Being connected with an outside force (whether it is religion or spirituality) assists patients to externalize traumatic experiences and it can create a sense of hope and belonging.

Health and policy literacy is an important component in assisting this population. Most undocumented cancer patients are unaware of policies that could assist them. As a professional, being informed of local and federal laws can help inform undocumented cancer patients what they are eligible for. Since there are very limited direct federal programs that assist financially, non-profit organizations and Catholic charities are the main source of financial and emotional support for patients. These organizations do not include immigration status as a form of eligibility to receive financial and emotional support.

Although there are a lot of factors and layers that affect this population, creating a safe space and providing appropriate empathetic care can create an impact on a patient’s perception of hope and motivation.

Olazagasti, C., & Duma, N. (2020). “Cancer Care for All? Tales of Caring for Undocumented Patients with Cancer.” 

Camarota SA, Zeigleron K. Immigrant population hits record 46.2 million in November 2021. CIS.org. November, 2021. Accessed February 8, 2022, from 

Beck TL, Le TK, Henry-Okafor Q, Shah MK. Medical care for undocumented immigrants: national and international issues. 

. 2019;4(1):33-45. doi:10.1016/j.cpha.2018.08.002

Tervalon M, Murray-Garcia J. “Cultural humility versus cultural competence: A critical distinction in defining physician training outcomes in multicultural education.” 

 1998;9(2):117–125. doi:10.1353/hpu.2010.0233

Undocumented patients with cancer face additional barriers to care. 

Challenges and Impacts Faced by Undocumented Cancer Patients in the Health Care System

Careers in nursing should be tailored to match your interests, career goals, and unique life circumstances. The nursing landscape allows significant room to advance and hone your skills, increase your earning power, and specialize in specific areas that are of the most interest to you.

Pursuing a role as a Nurse Practitioner (NP) can therefore be a strategic move. Although becoming an NP can take a bit of foresight and planning, this article will flesh out several strategic tips for achieving a Nurse Practitioner certification and advancing your nursing career.

What is the Difference Between an MSN and a Nurse Practitioner?

The 2 nursing career types in question—MSNs and NPs—are both achieved through postgraduate education. However, the 2 roles differ functionally from each other. As a rule of thumb, earning a Master of Science in Nursing (MSN) degree generally prepares an individual for roles that are often administrative, managerial, or leadership oriented.

MSNs often take positions such as Nurse Administrators, Clinical Nurse Leaders, or Nurse Executives. Alternatively, NPs receive training that is geared towards advanced technical care provision. NP roles are often more “hands-on” and integrally focused on patient care. The 2 roles lend themselves to different skill sets and interests. Thus, if you are currently practicing as an MSN and are interested in making a career change, your career goals might be better met by pursuing an NP role.

Five Tips for Pursuing Nurse Practitionership

Gaining a proactive understanding of the specifics of different nursing education options will expedite your career advancement and help you land in the role that best fits your strengths. Nursing educational pathways are complex and multifaceted. The more you know about yourself, what you’re looking for, and what various nursing positions offer, the better you’ll be able to position yourself and decide what path is optimal for you. Planning ahead and being proactive in your learning will benefit you as you consider becoming an NP.

2. It’s Never Too Late to Look for Scholarships

Nursing scholarships can come in a wide variety of formats and offerings. If you are contemplating engaging in further schooling (eg going back to school for an NP degree or certification), it’s always worth exploring 

available opportunities for scholarship funding

3. Talk to Current NPs to Better Understand What You Should Expect

Lived experience from current NPs can sometimes provide more helpful insights than any other amount of research. NPs that are already practicing in their field can share what their jobs are like, what educational route they chose, what they would recommend or not recommend, what they might change if they could go back and do it again, and more. Reaching out to an NP or 2 and asking if they would be willing to share about their experience can often yield helpful and enlightening advice in your decision-making process.

 of all types that many individuals leave on the table. If you are already working in a nursing role, negotiating with your current place of employment could create opportunities to decrease your weekly hours slightly to make schooling more accessible, make funding available to lessen the financial burden of your educational endeavors (if necessary), or help you access shadowing opportunities.

You never know what might be possible unless you ask. And approaching the negotiation table with concrete ideas for how your requests might benefit not only you but your employer as well can increase your rate of success considerably and open up huge opportunities.

Achieving a career as an NP won’t happen overnight. However, the move can yield a uniquely rewarding and fulfilling career, especially for individuals whose interests and skill sets lend themselves towards advanced practical care rather than more administrative positions within the field of nursing. Taking the time to obtain the credentials and experience necessary to pursuing NP positions can be a rewarding step and help you achieve the nursing career that fits you and your strengths.

Nurse Practitioner Scholarships: A Guide for MSN Students. Norwich University Online. February 4, 2022. Accessed March 31, 2022. 

Contract Negotiation for Nurse Practitioners: Tips, Resources, and Salary Calculator. Duquesne University School of Nursing. February 10, 2021. Accessed March 31, 2022.

Strategic tips for achieving a Nurse Practitioner certification and advancing your nursing career.

5 Tips for MSNs Looking to Become Nurse Practitioners

The significance of cancer screening is undeniable. With routine testing, there is an increased chance of detecting cancer early when it is most treatable. Not only can screening identify cancer at its earliest stages, it can also find abnormalities before they become malignant.

Due to COVID-19, access to potentially lifesaving tests have been reduced. In the beginning of the pandemic, many patients throughout the United States were challenged with the decision to risk exposure to the novel coronavirus, or delay their medical care. At the same time, some cancer screening centers were closed. Updated guidelines suggested to postpone certain procedures to reduce the possibility of infection. States issued stay-at-home orders and across the country there was apprehension to enter medical facilities. These influences led to a sharp decline in cancer screenings. According to one study, at the beginning of the pandemic, breast, colon, lung and prostate cancer screenings decreased by 85%, 75%, 56% and 74% respectively, compared to the previous year.1

To many professionals in oncology, this trend was alarming. Without screening, new cancers may not be detected and treatment may be deferred. This disruption could lead to cancer being diagnosed at an advanced stage and the need for more complex medical care. Consequent negative impacts and adverse outcomes could result for years to come.1

Being aware of the effect of COVID-19 allows for the opportunity to help people overcome existing uncertainties. We can provide education on the importance of screening, and how to do so safely. Using guidance from the Centers for Disease Control and Prevention (CDC), we can equip patients with the tools they need to return to the doctor’s office confidently. This direction includes protective measures taken in a public health clinical setting to ensure risk of exposure is minimized.2 Patients will understand how to protect themselves, while feeling their doctors are prioritizing their well-being.

Health care professionals should consider how cultural and environmental conditions contribute to access to screening. Understanding barriers to care is crucial to efficiently empower patients. Social determinants of health, including race, ethnicity, education, insurance status, employment and location all shape a patient’s ability to get screened for cancer. Although these factors have been present pre-pandemic, COVID-19 has highlighted and often accentuated the fact that these inequalities exist.3

Overall, the COVID-19 pandemic disproportionally affected medically underserved populations, including communities of color.3It has been previously established that there are racial disparities in cancer screening for Black and African American patients, as well as Hispanic patients. During the pandemic, access to cancer screening dropped at higher rates within these populations. Existing fears or mistrust of doctors were compounded by new ones related to COVID-19. Lack of access to care was exacerbated by COVID-19-related changes to public transportation, work schedules or the loss of employment and insurance within these groups.3 If these health disparities are ignored, it is impossible to create comprehensive solutions for cancer screening.

Although there has been improvement in cancer screenings since the beginning of the pandemic, it is our responsibility to make substantial attempts to address gaps to care. To maintain the momentum of recovery, inequities have to be acknowledged. Health care professionals should recognize disparities and contribute to efforts that expand access. There is a necessity to implement outreach, continue campaigns and offer education—especially for vulnerable communities. These initiatives are crucial in getting resources to underserved areas.4 Furthermore, to be successful, programs must be done in a culturally and linguistically appropriate manner.

Time to Screen is an example of a national campaign encouraging people to take control of their health by getting recommended cancer screenings back on track. This collaboration between Cancer

 and the Community Oncology Alliance stresses the importance of screening, educates the public on getting screened safely and provides guidance on getting connected to care. Delivering this service through a health disparities lens, patients will learn how to overcome barriers and obtain their screening. Through these continued efforts, we will be able to make positive impacts and ensure equitable resources to individuals in need. 

For more information on Time to Screen, you can call 1-855-53-SCREEN or go to 

Marissa Fors is Director of Specialized Programs at CancerCare.

 is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our comprehensive services include case management, counseling and support groups over the phone, online and in-person, educational workshops, publications and financial and co-payment assistance. All Cancer

 services are provided by master’s-prepared oncology social workers and world-leading cancer experts.

Patt D, Gordan L, Diaz M, et al. Impact of COVID-19 on cancer care: How the pandemic is delaying cancer diagnosis and treatment for American seniors. 

. 2020; 4:1059-1071. doi:10.1200/CCI.20.00134

Public Health Activity Guidance.Centers for Disease Control and Prevention.April 8, 2020. Accessed December 15, 202. https://bit.ly/3Fs1nPW

Carethers M, Sengupta R, Blakey R, Ribas A, D’Souza G. Disparities in cancer prevention in the COVID-19 era.

. November 1 2020; 13 (11) 893-896; doi: 10.1158/1940-6207.CAPR-20-0447

Marabella C. Cancer screenings recover from height of COVID-19 pandemic, but disparities remain. OncLive. August 19, 2021. Accessed December 15, 2021. 

Early detection is key to improving prognosis and achieving better outcomes for patients. 

Addressing the Impact of COVID-19 and Health Disparities on Cancer Screening

Medical equality, equity, and disparity were the focus of this year’s Reuters Events Total Health USA, a well-known national medical conference I had the honor to attend.

Health care leaders came together to share insight and solutions to some of America’s broken health care systems. As an oncology nurse for more than 2 decades, I especially appreciated the concern about increased mortality rates among African Americans with multiple myeloma (MM).

Marc Harrison, MD, president & CEO of Intermountain Health Care, and Kathy Giusti, Founder & Chief Mission Officer of the Multiple Myeloma Research Foundation (MMRF), delivered an authentic presentation uncovering the negligence of this gap in care. Since both these powerhouse CEOs are MM survivors, the conversation became quite passionate. At one point, Giusti grinned at the moderator and said, “This is the joy when you have two patients doing a fireside chat who live with a death sentence.” Here, I will share the hope for improved health equity as seen through the eyes of these top executives.

Although both words sound similar, they are relatively different. Health care equality simply means that the opportunity for proper treatment exists, whereas health care equity involves tailormade plans designed specifically for an individual’s unique needs. Unfortunately, many believe that if there is equal opportunity for those diagnosed with cancer, there is also equity. Sadly, this is not the case. Dr. Harrison noted that it was difficult as an affluent, White male and CEO of a major health care system to get the care he needed when fighting MM. He acknowledged that accessing care is even harder for both people of color and financially disadvantaged individuals. Therefore, although a healthcare organization may offer lifesaving MM treatments, the capability (financial, social, economic) to implement those treatments is anything but “equal.”

Uncovering Why More African Americans Die From Myeloma Than Caucasians

Giusti described a pivotal moment in MM research with the launching of the CoMMpass Study (NCT01454297) over a decade ago.

 The significance of the study came from the large number of African American involvement. According to Giusti, the goal for any clinical trial is to have at least 20% Black participation to represent this population accurately. The CoMMpass trial had an unprecedented 17% African American participation rate.

However, this led to startling data revealing that Black patients with MM had a lower genomic risk profile than White patients—yet were dying at twice the rate. After much investigation, Giusti described, “Their access to triple and quadruple therapy or even a stem cell transplant was much lower, and as a result, it was the access to the most cutting-edge therapies that was the problem.” In fact, if Black patients received equal and equitable MM treatment, their outcomes would be as good or better as other ethnicities.

How to Improve Health Disparities in the African American Population

Firstly, Giusti believes that “the best equity officers are often CEOs who are truly passionate about the topic—and set a clear message to the company that health equity is a priority.” Secondly, she speaks about how crucial retrieving health data is. How can we understand MM and other diseases if the patients with these conditions are not in easily accessible databases?

She points out that if Black people with MM are not in registries, they will not have the opportunity to be located and guided to progressive clinical trials that improve survival. Harrison recognizes that Black patients with lower incomes are not seen in big, fancy academic centers. Instead, he suggests these companies are “taking care of as few poor people as possible,” leaving community-level health systems to care for the underprivileged. Both speakers fervently agreed that health care systems need to reveal where these patients are. It’s imperative that clinical research organizations (CROs), pharmaceutical companies, and NCORP share where these folks reside and are being treated.

Thirdly, once high-risk patient populations are identified, an infrastructure needs to be created to help alleviate the burden of getting patients into registries and clinical trials. Asking staff that is already overworked to review records and get these folks onboarded is burdensome. Giusti suggested creating a foundation at the community level armed with “coordinators, community liaisons, and navigators is crucial to successfully obtaining and distributing data.” Lastly, she believes patient education is critical. When equipped with the correct knowledge, patients are empowered to make well-informed health decisions.

During the fireside chat, Giusti’s laid-back presentation was nicely complimented by Harrison’s bulldog approach. Her professional activism, along with his demands for improvement, inspired many viewers to be change agents. In fact, after reminding the audience that one-third of Americans are rationing medications because they can’t afford them, Harrison directly addressed the pharmaceutical companies.

He challenged them to evaluate their overly priced products, stating, “It’s unfair for Americans to bear the disproportionate burden for the cost of these products when the rest of the world benefits. We have poor Americans achieving poor health outcomes because of how much healthcare costs, and that’s a tragedy in the richest country in the world, and it has to change.” In addition, Giusti believes that creating private/public partnerships between profit and nonprofit organizations could be essential to decreasing health disparities.

Oncology nurses are often the main point of contact for newly diagnosed cancer patients. We have the opportunity to ensure that each person starts their journey with equality and equity on their side. Since the first step in resolving medical disparities is acknowledging them, we must stay informed about how our patients are affected by these inadequacies. From there, we remain committed to reform by creating custom-made resources and providing innovative education to staff and patients. As Harrison proclaimed, “Poor patient outcomes based on someone’s demographics is intolerable.”

Harrison M, Giusti K. Fireside chat: Spotlight on improving equity and inclusion. Presented at: Total Health Reuters Events; September 2022; Chicago, IL.

The MMRF CoMMpass Study. Multiple Myeloma Research Foundation. Accessed December 17, 2021. https://bit.ly/3sgk2ey

Oncology nurses are often the main point of contact for newly diagnosed patients with cancer. We have the opportunity to ensure that each person starts their journey with equality and equity on their side. 

Top Executives Vow to Improve Health Disparities among Patients with Multiple Myeloma

Mindfulness has been studied and proven to have a number of benefits on our physical and mental health. Mindfulness is the act of being present and aware of our surroundings while having a neutral response.

 Practicing mindfulness can offer the average person relief from a number of different life stressors. It can make a world of difference for caregivers of patients with cancer who are balancing their personal responsibilities with their loved one’s needs often with minimal support, which leads to caregiver stress and burnout.

Caregivers are often our unsung heroes of the cancer experience. Although not going through cancer treatment itself, caregivers walk alongside their loved one during a journey that can last anywhere between a few months to a lifetime. Studies show people caring for a loved one with cancer have a shorter yet more intense caregiving experience compared to people caring for a loved one with a different type of illness.

Within this intense experience, cancer caregivers can often find themselves physically and emotionally exhausted. Their lives do not stop just because they have become a caregiver, and so they need to adapt and find ways to navigate an even greater amount of responsibilities. Caregivers help their loved ones with activities of daily living, learn new medical tasks, and often coordinate services for their loved ones that do not leave much time left over to care for themselves.

This lack of time can lead to poor physical health for caregivers, and changes in sleeping or eating patterns, as well as increased feelings of anxiety and depression. Many caregivers do not notice these patterns until they feel completely run down and burnout.

Research has found mindfulness can have a great positive impact in many different areas of our lives. Mindfulness can help decrease feelings associated with burnout, such as anxiety and depression, as well as improving other symptoms such as lack of sleep or gastrointestinal issues.

 These benefits can all lead to a caregiver having a more positive outlook, which, in turn, can lead to better health outcomes for themselves and their loved ones.

Caregivers might share that they do not have the time to practice mindfulness or maybe feel like they don’t know where to start. If your caregivers are not talking about self-care, you may have to be the one to start the conversation. You can remind them that the idea of mindfulness can be intimidating when getting started but it is important to not let it discourage them.

You can start with encouraging your caregivers to set aside dedicated time to practice in a quiet space with no distractions. If it is hard to find time to set aside, that’s okay too, because they can be mindful anywhere. A person can be mindful on a walk home, while eating dinner or listening to music. Take a moment to remind caregivers before they make the decision to begin this practice that the goal is not to keep the mind from wandering, because this isn’t always possible for us as humans.

When they catch their mind wandering, encourage them to acknowledge it and bring focus back to the breath or whatever they chose to focus on.

There are so many different types of meditations we introduce caregivers to help them integrate mindfulness into their daily routines. Progressive muscle relaxation is a type of meditation where a person will focus on each part of their body, starting from their toes and going up to their head. During this exercise, the person will tense one muscle group at a time and then release the tension. Oftentimes, we don’t realize where we are holding tension in our bodies until we make ourselves release it.

When practicing this, one should focus only on one muscle group at a time and move slowly. Caregivers can go from their toes to their head or their head to their toes, as long as they include everything that is in between. They will tense their muscles on the inhale, pause for just a moment and then release the tension on the exhale. We should encourage caregivers to feel free to breathe out audibly, getting rid of anything they do not need.

Whether you practice progressive muscle relaxation, body scans, or journaling, you are living mindfully. We all have the ability to be mindful, we just need to give ourselves the space to practice it. We need to encourage our caregivers to take care of themselves by keeping up with their own physical and mental health to be able to better cope with stress and burnout. Introducing mindfulness is one way to address both.

What is mindfulness. Mindful. July 8, 2020. Accessed November 22, 2021. 

https://www.mindful.org/what-is-mindfulness/

National Alliance for Caregiving, National Cancer Institute and Cancer Support Community. 

Practicing mindfulness to relieve caregiver stress. Visiting Nurse Service of New York. Accessed November 22, 2021. 

https://www.vnsny.org/article/practicing-mindfulness-to-relieve-caregiver-stress/

Stoll, N. Three ways mindfulness can help caregivers

 Caring Across Generations. March 26, 2021. Accessed November 22, 2021. 

https://caringacross.org/blog-mindfulness-helps-caregivers/

Learning to relax. National Cancer Institute. March 23, 2021. Accessed November 22, 2021

https://www.cancer.gov/about-cancer/coping/feelings/relaxation

Within this intense experience, caregivers can often find themselves physically and emotionally exhausted

How Mindfulness Can Help Caregivers Cope with Stress and Burnout

For most institutions, the final date for being fully vaccinated for COVID-19 has passed or is quickly approaching—leaving some nurses feeling more pressure than ever.

Many had hopes of calling the bluff of their health care organization, but now are scrambling for a new career move. Although resistance to vaccinations has been around for 2 centuries, it has never been more politicized or debated following the COVID-19 pandemic. From freedom rallies to No. 1 hit songs, COVID-19 represents more than just widespread illness­—it is a socioeconomic torrent.

As nurses around the country weigh their professional options, some wonder if the answer resides in telling a white lie. But every choice has a consequence. What are the ramifications of lying on a religious exemption form?

These nurses are single moms and dads, breadwinners, 401K earners, and insurance providers. They need to work. A large number have survived the virus after caring for those who did not.

Feeling used and abused by hospitals and politicians, the temptation to fabricate a religious exemption is tempting. What's the big deal if there are suddenly more Dutch Reformed Congregationalists who don't believe in taking vaccinations?

 For starters, nurses are 1 of the most trusted professions in our country. And although we do not officially take the Hippocratic Oath, we abide by nonmaleficence (do no harm) and beneficence (do good) . Being deceptive may damage both of those principles.

Nurses have an innate desire to advocate for the ethical treatment of their patients, yet the foundation of continued employment could be established on deception. Having to choose a job over one’s honor is a cruel circumstance without a clear answer.

Due to burnout and stress, nurses have been leaving in droves even before the vaccine mandate. The thought of abandoning an already understaffed unit has many in our profession feeling guilty.

The hospital is often our home away from home—making the decision to conform or rebel more difficult. Many friendships are formed during each shift's long hours, and leaving behind these unique relationships is disheartening. However, there have been several reports of health care organizations approving nearly all religious exemption requests, and thereby staying tolerably staffed. This may be an appealing option for not only nurses, but hospital executives as well.

What about natural immunity? Do those nurses get a pass? The lack of conclusive data regarding the efficacy of antibodies produced by organic inoculation vs immunization has many nurses questioning the need for further viral protection.

Evidence-based practice is the backbone of the nursing profession, just ask our research instructors! Being told to forgo this fundamental learning objective is a hard pill to swallow (literally). Since medical experts can't even agree on the science of this subject, the nursing community is left feeling confused and leery. A bill was recently introduced to the House of Representatives called the "

," asking that natural immunity be considered when creating federal regulations. But as local politicians butt heads with the current administration, the bill will likely result in a long dragged-out ordeal. In the meantime, religious accommodation requests are at an all-time high.

To make matters even more complicated, we must consider the imperfections of the vaccine. Breakthrough cases of COVID-19 after full vaccination are being reported by local health departments daily. Unfortunately, many organizations are only subjecting non-vaccinated nurses to testing—leaving the potential for the vaccinated to spread the virus unknowingly. Many nurses fear that not only is this dangerous for patients, but this method will make anti-vaxxers appear solely responsible for being the disease spreaders. Perhaps the safest way to keep the virus out of the hospital is by testing every employee—leaving little room for error.

Either way, if COVID-19 can be contracted and spread whether vaccinated or not, what merit is there in removing great nurses from the workforce?

The predicament of fudging a religious exemption form goes deeper than just being dishonest. For many, it is their livelihood and freedom. So rather than incentivizing nurses to lie on exemption forms, perhaps we can provide COVID-19 testing for every health care worker to keep our patients surviving and our nurses thriving.

Vanderbilt Faculty & Staff Health and Wellness. Immunizations and religion. Accessed November 12, 2021. Available from: 

https://www.vumc.org/health-wellness/news-resource-articles/immunizations-and-religion

As nurses around the country weigh their professional options, some wonder if the answer resides in telling a white lie. But every choice has a consequence. What are the ramifications of lying on a religious exemption form?










Ramifications of Lying on a Religious Exemption Form for COVID-19 Vaccinations

Increasing burnout rates, vaccination mandates, and overall health care stress have some oncology nurses looking for a change. Switching from hospital to hospital doesn’t usually improve symptoms of being overworked, and going back to school can be expensive and time-consuming. However, becoming a nurse entrepreneur can be a surprisingly easy and sometimes affordable option that most nurses never consider.

Nothing beats working autonomously while providing excellent patient care on your terms! As a business owner, I know firsthand that getting started can be fun if you have the right tools. So, here are 3 easy and inexpensive ways you can become a nurse entrepreneur, too.

Before diving into the details, you may be wondering what type of businesses registered nurses (RNs) or nurse practitioners (NPs) can own. Here are a few new and exciting ideas:

IV hydration clinics (RNs and NPs): This quickly expanding market offers IV replenishment for post-op recovery support, as well as for immunity boosters and performance formulas.

Concierge nursing (RNs and NPs): This business allows RNs to deliver elite care in the home-based care of the patient’s individual needs and requests.

Integrative health (RNs and NPs): Integrative health services practice holistic care through activities like mindfulness, acupuncture, and herbal remedies.

Chronic care management (RNs and NPs): The 2015 change in chronic care management for Medicare patients makes this an attractive practice for many nurses.

Health writing (RNs and NPs): As the need for credible online content increases, so do 

Health and wellness coaching (RNs and NPs): Working directly with patients endorsing health, providing general support, and helping develop empowerment.

Med spa (RNs and NPs): Providing non-surgical procedures to improve skin and body health.

Retail medical clinics (NPs). Found in grocery stores, pharmacies, and retail stores, NPs provide acute care keeping people out of emergency departments.

Keep in mind that the state you live in plays a significant role in your scope of practice. Sometimes, physician oversight is required–but don’t let that scare you away. Many physicians love helping nurse-led health care practices, especially if they can earn a few bucks as well. In addition, some agencies provide medical directors for nurse-owned businesses at an affordable price.

Here are ways you can get started on the rewarding path to entrepreneurialism.

You would be amazed by all the free resources found on the internet. I stumbled across health writing after viewing a Facebook ad. After much investigating (reading reviews and social media following), I found a trustworthy company and got to work. Reading newsletters, blogs, and watching Youtube videos are easy ways to acquire more knowledge on a potential business idea. Subscribing to free masterclasses and online courses provides a wealth of helpful information as well. Once you’re fully committed to pursuing your new career, affordable memberships offer step-by-step guidelines to being a successful business owner. Up to that point, however, you don’t have to spend a dime. You will also need to contact your local government to discuss the rules and regulations of business ownership in your county/state.

Reaching out to other nurse entrepreneurs for support is crucial for business startups. Finding a safe community to share successes and bounce ideas off of one another decreases anxiety and provides motivation. Networking with like-minded nurse entrepreneurs is accessible with platforms such as LinkedIn. I suggest creating a profile and searching for people within your workspace. Learning tricks of the trade from those further along the entrepreneurial journey provides valuable advice and learning opportunities. These connections may be free of charge but worth more than money can provide!

The road to becoming a nurse entrepreneur can be lonely and often tests your confidence. Success can be slow to come, leaving you wondering if you chose the right path. Mistakes and bumps in the road can lead to self-doubt and feelings of inadequacy. Despite it all, however, you must be persistent and persevere. It’s ok to take a break and re-group, but you must keep moving forward. Samuel Johnson said, “Great works are performed not by strength, but by perseverance.” Although I am a novice business owner, I am proof that grit pays off–check out the byline for this article!

We became nurses to heal, soothe, and support the sick. But, who says nursing can only be done in a hospital? The landscape of health care is changing quickly, leading to opportunities for nurses to run their own businesses. Nurses can provide the autonomy and knowledge required to deliver outstanding patient care in unique and creative ways. You could be 3 easy and inexpensive steps away from your dream job. Go for it!

Becoming a nurse entrepreneur can be a surprisingly easy and sometimes affordable option that most nurses never consider.

Three Easy and Inexpensive Steps to Becoming a Nurse Entrepreneur

It’s interesting how oncology nurses can have two patients with the same diagnosis, prognosis, and treatment, but with entirely different outcomes. Although each patient may be cured, why will one easily tolerate cancer treatment while the other struggles every step of the way?

Mindset is often an overlooked aspect of the experience, but it is perhaps the most essential quality. Integrative remedies such as massage, aromatherapy, and acupuncture have become commonplace treatments at most cancer centers nationwide. However, there are some other unique methods oncology nurses that can use to help patients ‘

’ their way to well-being during cancer treatment.

I recently realized that for the past 12 years, I may have been teaching visual imagery wrong. Having patients imagine their tumors shrinking while chemotherapy attacks cancer cells could be doing more harm than good, and here’s why. If we consider the belief that positive thoughts bring positive results while negative thoughts bring negative results, asking patients to visualize cancer in their bodies could be a disadvantage.

Overlooking one’s disease may sound counterintuitive, but having patients focus on the healthy aspects of their bodies could be a far better approach. So, rather than encouraging patients to acknowledge their sickness, it’s more valuable to have them recognize their wellness. Replacing words like ‘kill’, ‘attack,’ ‘fight,’ or ‘win’ with terms like ‘healthy,’ ‘strong,’ ‘healing,’ and ‘clarity’ fosters an environment of grace and empowerment. There are also visual meditation techniques that may lead to enhanced immune responses and an improved positive mindset. Honoring each cell’s innate ability to heal through optimistic imagination is an effective way for patients to 

themselves as the healthy beings they are.

Rather than encouraging patients to acknowledge their sickness, it’s more valuable to have them recognize their wellness.

Contributors