, Ellen Miller, MSN, FNP-BC, a nurse practitioner with Vanderbilt University’s Radiation Oncology Survivorship Clinic, shares her experience with a 26-year-old woman who wanted to get pregnant after undergoing chemoradiation for stage II extranodal natural killer T-cell lymphoma of the nasal cavity as a teenager. Miller underscores why some patients may not choose or be able to pursue fertility preservation when they receive a cancer diagnosis, and what follow-up conversations might be necessary for survivors who have family building goals following cancer treatment. 

References and resources are provided below. 

“When I talked with her, I asked her, specifically, ‘Were you offered fertility preservation?’ And she said, ‘Absolutely.’ [But] she declined, she said, ‘I was 19, I didn’t think I wanted kids.’ But she had [since] met her husband, a wonderful man, and decided that she wanted to have kids.” 

“The out-of-pocket [cost] for fertility preservation is $10,000 to $15,000, on average. That’s hard for [anyone], not to mention a young [woman].” 

“Not only can chemotherapy damage existing eggs, but it can also lead patients to have early or premature menopause.” 

“If patients were to have left-sided chest radiation, [for] a lymphoma or maybe even a breast cancer, we would do some cardiac monitoring, since both the chemotherapy and the radiation can be damaging to the heart, and pregnancy can cause the heart to work harder.” 

“[The] trajectory for her experience was pretty standard, and we were thankful for that. But there are some reasons why some women would need further monitoring.” 

Improving Onco-Fertility Conversations With Adolescents and Young Adult Patients With Cancer

Fertility and Family Planning: Supportive Patient Conversations

Quality Oncology Care: Discussing Fertility Preservation for Patients With Breast Cancer

Fertility Preservation Guidelines Urge for Early Discussions With Young Patients with Cancer

Jennifer Levine on Fertility Challenges in Survivors of Childhood Cancer

Gwendolyn Quinn Discusses Fertility Concerns in Childhood Cancer Survivors

Let's Talk About Sex, Fertility, and Intimacy After Cancer

Adolescent and Young Adult Patients Face Unique Needs, Challenges

Is Chemotherapy an Emergency When Fertility Is at Risk?

Female reproductive health. CureSearch for Children’s Cancer. Accessed November 15, 2022. 

Having a baby after cancer: pregnancy. American Cancer Society. March 2019. Accessed November 15, 2022. 

Fertility facts. Leukemia & Lymphoma Society. November 2014. Accessed November 15, 2022. 

Quick guide to fertility preservation. July 2022. Accessed November 15, 2022. 

Cardonick EH. Overview of infertility and pregnancy outcome in cancer survivors. UpToDate. July 24, 2019. Accessed November 15, 2022. 

Podcasts

In this episode of "The Vitals," Ellen Miller, MSN, FNP-BC, talks about meeting a patient who realized she wanted to get pregnant after undergoing chemoradiation as a teenager.

Oncology Nursing Stories: Pregnancy After Lymphoma Chemoradiation 

Ask any patient with breast cancer and they’ll likely you tell you that the initial days following a diagnosis are a blur of appointments as treatments and surgeries are planned. Patients are often overwhelmed with the number of decisions that must be made amid their initial shock. Staying alive and getting the cancer out of their body is their top priority. Patients often don’t know what questions to ask or what to expect during their recovery.

That’s where oncology nurses come in. These nurses are in a unique position to help patients process the vast amount of information being given to them. Among that information are the adverse effects of mastectomy—and how those adverse effects, such as chest numbness, might affect their quality of life in the future.

I share this from my experience not only as a nurse of 20 years, but also as a breast cancer survivor. I was diagnosed with stage III breast cancer 5 years ago at the age of 39. My first concern was getting all the cancer out of my body. I was fortunate to be able to use my medical background to know what questions to ask during the initial flurry of appointments. Within 2 weeks, I started the first of 6 rounds of chemotherapy and scheduled a double mastectomy.


Thanks to my medical background, I knew that my nerves would be cut when my surgeon removed the breast tissue during my mastectomy. Without further intervention, the severing of nerves would interrupt the connection between the skin over my breasts and my brain—and that could lead to numbness across my chest area. It’s like the numbness that you feel after a dental procedure, but more widespread.

Before my mastectomy, I asked my doctor a question many patients wouldn’t know to ask: Am I ever going to feel sensation in my chest again? I knew that post-mastectomy sensation loss could be permanent. Many patients, however, are not aware of this adverse effect. If their surgeon did mention sensation loss, it was likely one of the many adverse effects that were quickly covered.

What I didn’t know was the impact that chest numbness would have on my quality of life. Until my sensation started to return, I felt nothing. That numbness also compounded the physical and mental toll cancer survivorship had taken on me. A hug didn’t have the same effect, and I didn’t feel connected to my own body. This had a tremendous effect on my body image and self-esteem. Chest numbness can also impact safety; for instance, knowing if you’re being burned while cooking, sunbathing, or showering.

I also didn’t know that it was possible to restore chest sensation as a part of breast reconstruction. I was fortunate that my surgeon performed breast neurotization—surgically reconnecting nerves with the goal of restoring sensation. If the nerve connection is repaired, it’s possible to get feeling back over time. As a result, I eventually regained much of the feeling in my chest.


During my breast reconstruction procedure, my surgeon used nerve allografts (donated human tissue) to reconnect the nerves that had been cut during my mastectomy. This procedure enables nerves to regenerate over time, potentially restoring sensation. This technique can be performed during breast reconstruction, including immediate reconstruction, delayed reconstruction, and some revision surgeries.

Nerves regenerate slowly—at a rate of approximately 1 mm per day. I started to notice some signs of nerve regeneration after 3 months, and the sensation continued to progressively improve over the next 18 months.



Oncology nursing continues to evolve with advancements in breast cancer treatment, and the way we talk about chest numbness must evolve, too. Oncology care teams should be proactively talking with their patients about the realities of chest numbness, including the emotionally devastating, isolating and disorienting feelings that may also occur.

Not every patient will be a candidate for breast neurotization, but patients need to know that it may be an option. You don’t need to have personal experience with sensation loss to educate your patients on the potential quality of life impacts of chest numbness and treatment options. This topic isn’t talked about nearly enough in the pre-operative stage but using your voice to advocate for your patients will change lives.

I’m fortunate to now live cancer-free and feel like my old self, but I know that if my chest numbness had been permanent, it would have had a tremendously negative impact on my life. Many patients feel guilty for being burdened by chest numbness—they think they should just be grateful to be alive. But it’s normal and valid to want to feel completely whole again. And it’s possible—I’m living proof.

Mitchell S, Gass J, Hanna M. How well informed do patients feel about their breast cancer surgery options? Findings from a nationwide survey of women after lumpectomy and/or mastectomy. 

. 2018;226(2):134-146.e3. doi:10.1016/j.jamcollsurg.2017.10.022

Habibi K, Delay E, Sarfati I, Duteille F, Clough KB, Atlan M. Lessons learned from twenty-eight cases of burns following breast reconstruction: an underestimated complication requiring inclusion in consent information. 

. 2021;41(7):NP773-NP779. doi:10.1093/asj/sjab027

Articles

Oncology nurses are in a unique position to educate patients with breast cancer about post-mastectomy chest numbness.

Opinion: Post-Mastectomy Chest Numbness: Oncology Nurses Are Key to Patient Education

When it comes to health literacy, many people tend to hold some key misconceptions, according to Sandra Kurtin, PhD, ANP-BC, FAPO.

“People think about health literacy as: can you read?; Can you write?; Are you literate? But it's so much more than that,” Kurtin, who is a hematology/oncology nurse practitioner at the University of Arizona Cancer Care, as well as assistant professor of clinical medicine, and adjuvant clinical assistant professor of nursing at the University of Arizona, and who completed who her dissertation on health-related self-management, said in an interview 

. “Literacy is about taking in information, synthesizing it, and then applying it toward managing your health.”

In a presentation on health literacy during the 

 CFS, Kurtin noted that functional health literacy comprised of reading ability, writing ability, and basic language skills. Functional health literacy is what most people think of when they hear the term “health literacy.”

However, as the healthcare landscape has changed, oncology practices have shifted from a more paternalistic model to a system where patients and caregivers are increasingly expected to take responsibility for more aspects of their health care. With the role of digital technology continuing to involve, and more and more cancer care occurring in the outpatient setting, health literacy as a concept has had to expand to reflect the different levels of cognitive, interpersonal, and social skills needed to adequately mange one’s health during cancer care.

In the modern era, health literacy has a direct outcome to health outcomes, Kurtin added, noting that health literacy influences access to and utilization of health services, interactions with health care providers and systems, symptom-management at home, caregiving skills, and the ability to participate in shared decision-making.

According to Kurtin, there may be people who cannot read, yet demonstrate a superior command on synthetizing health-related information. At the same time, there may be patients with an impressive academic background who struggle to do so.As an oncology professional, it is therefore important to assess where a patient or caregiver stands and use these indicators to help improve understanding.

“That may mean understanding schedules and all the logistics that it takes to see a provider,” she said. “In cancer care, [patients and caregivers have to understand] how to call someone if they need help, who to call, and how to call them. They need to be taught to truly be part of the team. To me, that's what health literacy is: it means you are able to participate in self-management and be part of the team.”

Self-management refers to a patient’s ability to handle the variables that occur across the cancer continuum, for instance, their ability to handle transitions in care settings, or their ability to “master” a threat to their stability, such as a treatment-related toxicity. According to Kurtin, self-efficacy is at the core of human agency, behavior change, and decision making, and consequently, a patient’s ability to manage their health has a significant impact in helping them feel stable and in control of their health. 

She also noted that patient-centered communication is at the root of communicative health literacy and health self-management.

Different pillars of information require different communication techniques. For example, the disease information represents 1 pillar. When a patient is first diagnosed, they are likely asking the following questions: What do I have? What does it mean? How am I going to be treated—and what will that mean?

Moreover, they may have concerns about managing their therapy, understanding adverse effects (AEs), as well as preventing and mitigating the severity of those AEs.

The second pillar considers the fact that the patient is a whole person, Therefore, there may be myriad of specialists involved to help make that person whole. Patients must be taught how to effectively communicate with the rest of the heath team, from the cardiologists, the endocrinologist, to the primary care provider.

Delivering a diagnosis, assigning treatment, and noting the date of the next follow-up visit is insufficient,” Kurtin said. “We give [patients] some information, they get pamphlets, but we need to teach them how to be part of the health care team.” she said.

“As a provider, as a nurse practitioner, and as an oncology nurse for several years before that, I know that patients often tell the nurses way more than they tell the provider,” Kurtin said. “[This is] because they’re sitting in the chair for whatever amount of time and you get to talking and they may be afraid to say something to the physician or the advance practice provider, or because the visits are short, and [during that time] they are really focused on their physical exam and their labs and the details. And sometimes providers forget to get into the experience of it, and really get to their questions during clinical visits.”

“Nurses are really critical in that sense; they are a conduit for that communication,” she said. “But they also tend to have more time with a patient that isn’t so focused on all those details, but more on them. They’re critical to really providing that education.”

Nursing-led education is especially important in light of where most patients get their information. According to a study published in 

the Journal of Medical Internet Research,

 83% of patients with chronic conditions (including cancer) and internet access use the internet to look for health information, 79% of caregivers have accessed to the internet and, among those with internet access, 88% use the internet to find health information.9 Moreover, as 85% of American adults own a cell phone, including 58% of adults aged 65 or older, the tendency to utilize the internet for health-related questions is continuing to trend.

Kurtin concluded her presentation with strategies to assess and improve health literacy and shared decision making. First, nurses should seek to know and understand the patient, including their culture, beliefs, and goals; their support network; their preferences for learning; their barriers to self-management; and their access or barriers to care. She encouraged nurses to be intentional and to set expectations. This means teaching patients how to prepare for a clinic visits, how to ask questions and whom to ask, and specific instructions involving their schedule, treatment plan, self-medication options, and reportable signs and symptoms that they are their caregiver need to monitor. Patients should also be provided with evidence-based information. 

“The other thing that I really try to emphasize with the people that I work with is the importance of the consistency of message,” Kurtin concluded. “We all [should] be learning from the same sources and lifting the whole team up. What we say to the patient needs to be consistent from person to person—because if you have conflicting information that [negatively] affects health literacy. Nurses are important in the sense of carrying on the message and being able to reinforce the education for whatever prescribed therapy the patient is receiving.”

Kurtin SW. Assessing health literacy to improve patient education. Presented at: 40th Annual Chemotherapy Foundation Symposium; November 9-11, 2022; New York, NY and virtual.

Batterham RW, Hawkins M, Collins PA, Buchbinder R, Osborne RH. Health literacy: applying current concepts to improve health services and reduce health inequalities. 

. 2016;132:3-12. doi:10.1016/j.puhe.2016.01.001

Kurtin SW. Mobile health technology, technology engagement, and communicative health literacy in older adult cancer survivors. 2018. Unpublished dissertation.

Bandura A. Human agency in social cognitive theory. 

. 1989;44(9):1175-1184. doi:10.1037/0003-066x.44.9.1175

Lorig K, Laurent DD, Plant K, Krishnan E, Ritter PL. The components of action planning and their associations with behavior and health outcomes. 

. 2014;10(1):50-59. doi:10.1177/1742395313495572

Lorig KR, Ritter P, Stewart AL, et al. Chronic disease self-management program: 2-year health status and health care utilization outcomes. 

. 2001;39(11):1217-1223. doi:10.1097/00005650-200111000-00008

Osborne RH, Batterham RW, Elsworth GR, Hawkins M, Buchbinder R. The grounded psychometric development and initial validation of the Health Literacy Questionnaire (HLQ). 

. 2013;13:658. Published 2013 Jul 16. doi:10.1186/1471-2458-13-658

Champlin S, Mackert M, Glowacki EM, Donovan EE. Toward a Better Understanding of Patient Health Literacy: A Focus on the Skills Patients Need to Find Health Information. 

. 2017;27(8):1160-1176. doi:10.1177/1049732316646355

Tennant B, Stellefson M, Dodd V, et al. eHealth literacy and Web 2.0 health information seeking behaviors among baby boomers and older adults. 

. 2015;17(3):e70. Published 2015 Mar 17. doi:10.2196/jmir.3992

During the 40th Annual Chemotherapy Foundation Symposium, Sandra Kurtin, PhD, ANP-BC, FAPO, discussed improving health literacy in oncology care. 

Health Literacy in Cancer Care Begins with the Nursing Staff

Several immunotherapy agents have received FDA approval across numerous malignancies since ipilimumab (Yervoy) a decade ago and, in many ways, the effect of immunotherapy in certain populations is equitable to magic, according to Melinda S. Weber, DNP, APN, AOCN-C. However, the unique mechanism of action associated with immunotherapy is also linked to adverse events (AEs) for patients receiving treatment.

In a presentation during the Nursing track at the 

 Weber who is the director of care transformation and a charge APN in the Skin and Sarcoma Division at John Theurer Cancer Center at Hackensack University Medical Center Weber, touched on the marked success of the treatment in the field in melanoma and outlined the tenets of early recognition, appropriate grading, and best management practices for these immune-related adverse events (irAEs).

Immunotherapeutic Agents Usher in a Wave of Hope

“Prior to the advent of ipilimumab [Yervoy] in 2011, [a diagnosis of] metastatic melanoma was a death sentence,” said Weber in an interview with 

 ahead of a presentation. “No radiation touched [the melanoma], no chemotherapy touched it, [and approximately] less than 1% of patients might survive [treatment with] high-dose IL-2 therapy, but that was very rare.”

In November 2022, approved immune-checkpoint inhibitors include atezolizumab (Tecentriq), avelumab (Bavencio), cemiplimab-rwlc (Libtayo), dostarlimab-gxly (Jermperli), durvalumab (Imfinzi), nivolumab (Opdivo), and pembrolizumab (Keytruda). Each of these regiments are approved across multiple indications.

Weber said that the efficacy that immunotherapy wielded in certain populations has been nothing short of astounding, and that it drastically changed her clinical practice.

“They’ve changed the face of oncology…I never thought in a million years that I would see PET scans, that were once lit up like a Christmas tree, become normal and stay normal over months, and then years. Now we have people that are survivors 10 years [or longer]….Our focus for those patients [with] late-stage disease was about palliative care, preserving their dignity, and optimizing their comfort. It was very sad.”

Weber said that the availability of these drugs is exciting because they are helping many patients achieve remission, and for those who do not, immunotherapeutic agents may help individuals reach partial remission, prolonged duration of responses, and superior overall survival rates.

“I never take for granted when we bring in our patients for follow-up visits, because I will never forget what it was like before these drugs,” Weber said. “To see people now go on to live their lives, enjoy their families, watch their children and grandchildren grow, is incredible.”

However, Weber noted the start of the immunotherapy integration was not a smooth journey and shared that when immunotherapy first hit the scene, she had patients who chose not to continue treatment because the irAEs were so severe. According to Weber, as clinicians, you must do everything in your power to avoid that possibility, because patients could be forfeiting a chance at a partial or full remission.

The most common irAEs associated with immune-checkpoint inhibitors include fatigue, asthenia, musculoskeletal pain, decreased appetite, diarrhea, nausea, vomiting, pyrexia, cough, dyspnea, constipation, abdominal pain, rash, peripheral neuropathy, mucosal inflammation, alopecia and stomatitis.

Additionally, immune-checkpoint inhibition is also associated with pneumonitis, colitis, hepatitis, encephalitis, endocrinopathies, dermatologic adverse events, nephritis, renal dysfunction, solid organ transplant rejection, infusions-related reactions, and embryo-fetal toxicity.

According to the National Comprehensive Cancer Network (NCCN), a comprehensive baseline assessment of a patient’s current emotional, physical, and spiritual status, with attention to a patient’s social determinants of health, financial toxicity burden, and health literacy are important for early recognition and prompt intervention for irAEs. These factors may influence how and when patients report irAEs, and can influence whether a patient needs to be admitted following the emergence of irAEs. 

According to Weber, the key with irAEs is to catch them early and intervene as soon as possible, because the sooner that the reactions dissolve and therapy can continue, the greater the outcome the patient can expect to achieve.

Weber noted that nurses today may be able to leverage novel technologies such as mobile applications or software programs to track irAEs. Prior to the advent of these applications, research nurses would carry around binders with the common terminology criteria for adverse events (CTCAE) information when assessing patients.

Grade 1: Mild; asymptomatic or mild symptoms; clinical or diagnostic observations only, intervention not indicated.

Gradw 2: Moderate; minimal, local, or noninvasive intervention indicated; limiting age-appropriate instrumental activities of daily living (ADL).

Grade 3: Severe or medically significant but not immediately life-threatening; hospitalization or prolongation of hospitalization indicated; disabling; limiting self-care ADL.

Grade 4: Life-threatening consequences; urgent intervention indicated.

Although CTCAE provides this broad overview of irAE grading, Weber also provided an example of what the clinical presentation looks like for a common irAE, diarrhea.

Grade 1: Increase of < 4 stools per day over baseline; mild increase in ostomy output compared with baseline.

Grade 2: Increase of 4 to 6 stools per day over baseline; moderate increase in ostomy output compared with baseline; limiting instrumental ADL.

Grade 3: Increase of > 7 stools per day over baseline; hospitalization indicated; severe increase in ostomy output compared with baseline limiting self-care ADL.

According to Weber, CTCAE criteria offer clear guidance into appropriate handling of various irAEs, and with early intervention, management is possible. However, she repeatedly stressed that these irAEs are not to be taking lightly, as they can represent a serious barrier to treatment for many patients.

“If I can get anything across, it is that irAEs represent real suffering. [They are] different from chemotherapy adverse reactions,” Weber said. “For example, immunotherapy-induced colitis is horrific, and patients, depending on the grade, may be frightened to leave their homes. Besides the abdominal cramping, the discomfort, the risk of dehydration malnutrition, for many patients, there may be embarrassment or fear of living a normal life, and they may not want to leave their house.”

Moreover, irAEs are different from chemotherapy-related toxicities, because they can occur at unexpected time intervals. These toxicities have varying onset times—they can appear as early as within the first 2 weeks of treatment, or 12 weeks in, they can even occur over 22 months past the last cycle of immunotherapy. Thus, the gravity of these toxicities, the threat they pose to patients, and the need for patient education, cannot be overemphasized.

“irAEs are profoundly debilitating for many, many patients,” she added. “Our job as nursing professionals, besides [providing] great patient education, must be knowing the patient’s baseline to where they are right now, teaching patients to call us early when anything is out of ordinary that’s didn’t not occur before these drugs to call us, and intervening as swiftly as possible.”

Nurses Play a Vital Role in irAE Management

Therefore, when a patient is embarking on immunotherapy, the oncology nurse adopts a unique role as a patient cheerleader.

“We have to be the person who provides knowledge and comfort to that patient,” Weber said. She noted that patients are often afraid of the AEs of their treatments, but nurses can help reassure them and let them know that there is a plan to manage their irAEs.…We tell patients ‘We are going to get you through this,’” Weber said. She added that she likes to tell patients that immunotherapy makes their immune system similar to hungry sharks.

“It’s important for patients to understand what’s happening to them and how we are going to intervene,” she said. “We use a multidisciplinary group, we need our nutritionist, our psychotherapist, we need [individuals] that can provide globally comprehensively care for that patient.”

When it comes to symptom management, there is an arsenal of strategies that clinicians can utilize to help their patients; however, the most important thing, according to Weber, is recognizing the effect these symptoms can have on a patient’s quality of life and reassure them that it can be diminished.

“You can do old-fashioned things. For example, with diarrhea you can [advise patients] to use the BRAT diet, given its within your institutions policies. You can give Imodium [loperamide], Lemotil [atropine and diphenoxylate], Bentyl [dicycloverine], etc. Teach them appropriate dosing of prednisone as ordered, and to get the [irAE] behind them so they can move on.

Weber stressed that there must be awareness alongside action. Nurses have a responsibility to recognize the anguish, pain, and sometimes embarrassment, that patients experienced with these therapies. In managing the patients’ physical symptoms, it is important to recognize the turmoil they can induce on the whole person.

“They are not just clinical symptoms; they really change the face of the patient’s and the family member’s perception of their treatment,” Weber emphasized. “We have to really inspire hope that it's not going to be this way forever,” she said.

Weber MS. Monitoring and managing toxicities associated with immune checkpoint inhibitors. Presented at: 

 CFS®; November 9-11, 2022; New York, NY.

Clinical practice guidelines in oncology. National Comprehensive Cancer Network. Management of Immune-Related Toxicities. Version 1.2022 February 28, 2022. Accessed November 9, 2022. bit.ly/3UK0VnZ

Common terminology criteria for adverse events (CTCAE) v5.0. November 27, 2017. Accessed November 9, 2022. bit.ly/3TlJF7n 

Immunotherapy has changed the face of cancer treatment, but requires appropriate irAE management to reach full potential. 

Maximizing Potential of Immunotherapy Requires Appropriate irAE Management

Bringing equality to cancer care remains a focus and building upon the foundation of guidelines to usher in a more inclusive environment for patients will require making appropriate modifications to care and the enrollment process of clinical trials,” according to Narjust Florez, MD.

“Cancer care equity means that regardless of your sexual orientation, your racial background, the language you speak, where you come from, or your socioeconomic status, you are receiving the standard of care that follows the guidelines,” she said. “ It [mean]s that we are able to provide equal care for everyone and also tailor to their needs as we are different, and our populations are different.”

 CFS® titled, “Cancer Care Equity & Survivorship” Florez spoke with 

® to highlight key takeaways for the audience. These include addressing difficult situations that may arise at the clinic and how to handle them to give patients the best care. In our discussion, Florez, a thoracic medical oncologist and associate director of the Cancer Care Equity Program at Dana-Farber Cancer Institute, also noted that she will identify the 3 principles of cultural humility, how to apply them to everyday practice for all cancer diagnoses regardless of stage, and what steps oncologists can take to help create an environment where all patients are given the same care and opportunities to participate in clinical trials.

Although there are often misconceptions of what cancer survivorship means with the assumption that it’s the period after patients have completed treatments, Florez noted this definition excludes patients with metastatic disease. “Cancer survivorship establishes [patients] have a cancer diagnosis until the end of their journey or the moment of death,” she said.

In cancer care, the entire cancer continuum is affected by inequities. Education and fostering an understanding of these issues in the treatment paradigm are steps that can be taken to bridge the gap in knowledge, but there is also an intersection “between survivorship and equity,” which is often overlooked.

“We often talk about equity at moments of diagnosis [or with] biomarker testing, but we forget about the intricate parts of cancer survivorship and how certain populations can be discriminated or excluded from the health care system during their cancer survivorship,” Florez said.

“Everybody should be involved in cancer equity,” she added. “This is not taking away from the majority group of patients—it is that everybody deserves equal care. Race, socioeconomic status, or English proficiency shouldn’t affect that.”

Florez explained that the lack of inclusion in clinical trials reaches beyond racial and ethnic disparities, affecting subgroups including younger patients—who often have their experiences invalidated—as well as minorities, women, and older adults. Additionally, in lung cancer trials, women and older adults are often excluded.

“It’s unethical not to provide these patients the option to participate in a clinical trial. Drugs can take years to get approved or for patients to get access. Being part of a clinical trial allows those patients to get access to drugs early on, not only drugs, but drugs combinations,” Florez said.

In the United States, White men represent up a large percentage of clinical trial participants. However, when key groups of patients are not included, the efficacy data will not accurately reflect all patient populations. This results in unknown adverse events and complications with treatments for minority subgroups.

“It is like you’re trying to create a wedding dress that would fit every bride in the world—it is impossible,” Florez said. “We come in different ways, shapes, forms, and [with varying] metabolisms. A lack of inclusion of all these populations generates very homogeneous data that unfortunately drugs get approved and then we learn about [adverse] effects. We learn about lack of efficacy in these populations after the drug is approved and after we know they have worse outcomes.”

She noted, for example, that when the agent tamoxifen (Soltamox) was developed, most of the clinical trial participants were White women. The exclusion of Black women resulted in suboptimal outcomes after treatment. Although today oncologists recognize that the tolerability and metabolism of the drug affects different populations differently, many patients suffered from not being included in the clinical trials—a setback that could have been avoided.

“Racial minorities [such as] Black, Hispanic, Native American, Native Hawaiian, and Pacific Islander populations [represent] around 40% of the US population,” Florez said. When we ask for inclusion, we’re not asking to include a 1% subgroup, [we want] 40%. When you add women and older adults, over 50% of patients with cancer [belong to a minority group]. We’re excluding the majority instead of including them.”

Florez noted that a shift in terminology toward more compassionate language can go a long way. For example, saying “patients with lung cancer” rather than “lung cancer patients” emphasizes the patient first and helps avoid defining someone by their disease. Bringing inclusivity to care also encompasses the process of training new doctors and establishing clinical trials throughout the community and continuing to foster those community relationships. Additionally, certain exclusion criteria remain a challenge in ensuring that clinical trials are representative of the whole population, making it more critical that trials are brought to the community setting.

Embracing the concept of cultural humility by learning from peers is also a key step in understanding how others view healthcare. Florez noted that previously the term cultural competency was used to demonstrate understanding of another person’s culture, but it is difficult to truly be competent in another’s culture. Therefore, shifting to the mindset that every day you can learn from the people around you to better understand their cultural beliefs and practice being culturally humble, will help physicians also recognize how their patients view healthcare. According to Florez, it is key “to listen and follow our patients’ cultural beliefs and healthcare beliefs because that's what dictates health [and] how you see health in your own eyes.”

“Survivorship is seen with different lenses, and that cultural beliefs and healthcare believes affects our patient survivorship experience,” Florez said. “We need to listen and understand instead of judging; judging is no way to practice medicine. For some cultures complimentary medicine is part of survivorship, so having an open communication with your patients, we ensure that they let you know that they're taking any complimentary medicine what their goals in survivorship are.”

“Every day we have more and more survivors so it's important that we understand how each of them see cancer survivorship and their life moving forward,” she added.

Dana-Farber Cancer Institute’s Steps Toward Inclusion

“I’m in an ivory tower institution and at Dana-Farber and Harvard Medical School, we need to come down and get to meet our community partners. It is no longer you and the doctor, and this is what I do. We’re in this together,” Florez said.

In 2012, the Cancer Care Equity Program at Dana-Farber was established to expand access to treatments, clinical trials, and educational programs as well as facilitate community outreach. Patients are referred to the Dana-Farber clinics by a primary care physician when there is a possibility of a cancer diagnosis regardless of insurance and location of residence.

Florez described the program as a direction intervention where Dana-Farber oncologists treat and assist patients following referrals. She also highlighted the Patient Navigator Program that was created to assist patients with the health care system.

“It has been very successful; we have navigated, in the last year, over 170 patients to assure they have access to care. For example, [imagine] that you have a mutation, but you cannot afford the [targeted agent]? [Imagine] you survive your cancer, but you are not able to get the CT scans that require follow-up to see if the cancer is back? [It is important to] be there in the clinic to help [mitigate these issues] and continue to help with patient navigation.”

She concluded by noting that time-bound interventions may not be as effective for patients as long-lasting interventions. The long-lasting interventions allow oncologists to learn from the community and continue to be a part of the care process and time-bound interventions do not give the time necessary to foster a relationship with the community. She noted that there can be a lack of trust when patients see their doctors come in for a short span of time and leave, not remaining a part of care.

Narjust Florez, MD, emphasizes why oncology health care professionals should bring a sense of urgency to ensuring that clinical trials represent all patient populations. 

Inclusivity Must Be Made A Priority in Clinical Trials and Cancer Care

When faced with a cancer diagnosis, patients may consider acupuncture, meditation, music therapy, and other supplemental care alternatives. However, they should make sure to go to professionals who understand oncology, nursing experts say. 

In July 2022, the University of Michigan released its National Poll on Healthy Aging, whose results showed that 2 in 3 adults between 50 and 80 (66%) reported using at least 1 integrative medicine strategy to treat a health problem. The most commonly used strategies were massage (41%), chiropractic (41%), meditation and mindfulness (27%), yoga (24%), and acupuncture (16%).

“We’ve definitely seen an increase in patients who are looking for more natural treatments to reduce side effects such as anxiety, fatigue, and nausea,” Carey Ramirez, ANP-C, ACHPN, an advanced practice manager in the Department of Supportive Care Medicine at City of Hope, told 

®. “Some patients are also reluctant to take opioids for pain and prefer a nonpharmacological option.”

Acupuncture is a popular choice for chronic cancer-related pain. The technique involves inserting thin, sterile needles into the body and can be administered only by licensed practitioners. Although not widely available, multiple studies have found it to be more effective than the control at reducing chronic pain.

Mao et al, for instance, found that 10 weeks of acupuncture greatly outperformed usual care at reducing chronic muscuoloskeletal pain. The therapy has also been shown to reduce nausea, fatigue, dry mouth, insomnia, and neuropathy in cancer patients.

Other integrative therapies, however, remain controversial because there is not enough evidence to support them and because they may have a negative effect on concurrent treatments. “We only recommend evidence-based complementary medicine treatments,” Ramirez said. “If a patient asks about…herbs and supplements, we’ll discuss the risks and benefits with them.” Ginger and garlic, he pointed out, may interfere with such anticoagulants as warfarin and increase a patient’s risk of bleeding.

City of Hope’s Department of Supportive Care Medicine gives cancer patients physical, psychological, social, and practical support that improves outcomes and enables them to maximize their personal strengths.The evidence-based complementary therapies it offers are art and music therapy, yoga, meditation, and animal-assisted therapy, whereby trained animals visit patients in the hospital. The Department also plans to add an acupuncturist to the staff this year.

According to Ramirez, “it’s important for patients to seek treatment from an acupuncturist…that specializes in oncology or a massage therapist trained in oncology massage” because practitioners “should be familiar with…[the] precautions that need to be taken…with cancer patients.”

Adding Integrative Care to Oncology Treatments

Farah Momin, BSN, RN, an assistant nurse manager at the Integrative Medicine Center of MD Anderson Cancer Center, said in an interview that patients may benefit from a referral to an center like hers. MD Anderson patients are referred for acupuncture, oncology massage, yoga, and meditation, all of which are offered by the Integrative Medicine Center. Its staff works closely with every patient’s oncologist to ensure treatments meet needs and supplement the traditional care patients are receiving.

“Our program uses a combination of integrative approaches to treat and heal the whole person,” Momin said. Patients come to her with questions about what foods to avoid while undergoing cancer treatment, what foods fight the disease, and how they can minimize common side effects like fatigue, pain, and nausea. “We have a dietician on staff who…tailor[s]…meal plan[s] that help them meet their dietary goals,” she explained, adding that they “also have an acupuncturist and [a] massage therapist trained in oncology…[who] can treat common side effects, including radiation-induced neuropathy and dry mouth caused by radiation or chemotherapy.”

In addition, and particularly after the start of the pandemic, patients often ask to meet with a psychologist to deal with the many emotions they experience after a cancer diagnosis. “Since we work with immunocompromised patients, many of our free group classes have moved online to ensure patient safety,” Momin said. “Yoga, Connect and Reflect with Music, and Cooking for Optimal Health are all offered virtually to…patients and…caregivers.” Studies have shown that music not only alleviates anxiety, depression, and pain in patients with cancer but also improves their quality of life.

Momin has seen complementary medicine help patients with many side effects of cancer and empower them as well—as long as pracitioners understand their needs. “Choosing to participate in an integrative medicine practice…can give cancer patients a sense of control” because “they’re being proactive and addressing the psychological and emotional aspects of their condition.”

A valuable resource for oncology nurses and other health care providers, the 

 will be holding its annual conference October 20-22 at The Scott Resort & Spa, in Scottsdale, Arizona.

1. Use of and Interest in integrative medicine strategies, July/August 2022. University of Michigan National Poll on Healthy Aging. Accessed September 7, 2022. https://bit.ly/3SmQndt

2. Mao JJ, Liou KT, Baser RE, et al. Effectiveness of electroacupuncture or auricular acupuncture vs usual care for chronic musculoskeletal pain among cancer survivors: the PEACE randomized clinical trial. 

 2021;7(5):720-727. doi:10.1001/jamaoncol.2021.0310

3. Lu W, Dean-Clower E, Doherty-Gilman A, Rosenthal DS. The value of acupuncture in cancer care. 

. 2008;22(4):631-648, viii. doi:10.1016/j.hoc.2008.04.005

4. Wang Y, Tang H, Guo Q, et al. Effects of intravenous patient-controlled sufentanil analgesia and music therapy on pain and hemodynamics after surgery for lung cancer: a randomized parallel study. 

. 2015;21(11):667-672. doi:10.1089/acm.2014.0310

5. Abebe W. Review of herbal medications with the potential to cause bleeding: dental implications, and risk prediction and prevention avenues. 

. 2019;10(1):51-64. doi:10.1007/s13167-018-0158-2

Holistic options like acupuncture and music therapy may benefit those undergoing cancer treatment. 

Helping Patients Navigate Complementary Treatments

A study by investigators at the University of Michigan looked at the association between financial and physical health and found that, compared with people who have no medical debt,those with medical debt forgo care at higher rates and have higher rates of poor physical health, psychiatric disorders, and all-cause mortality.

Researchers found a link between chronic disease diagnoses and adverse credit report outcomes across all examined outcomes. The more chronic conditions the patients had, the more likely they were to have medical debt in collections, nonmedical debt in collections, any delinquent debt, a low credit score, and a recent bankruptcy. Not surprisingly, they also had significantly greater amounts of debt.

According to the report, medical debt varies significantly across conditions. Among individuals with medical debt in collections, severe mental illness was associated with the largest increase in debt burden, followed by substance use disorders, stroke, congestive heart failure, dementia, and liver disease. A cancer diagnosis conferred the smallest increase in rates of medical debt in collections and had less associated medical debt in collections than other chronic conditions.

Researchers also found a negative association between age and adverse credit outcomes, with younger people experiencing negative outcomes more often than older people. Women were also slightly more likely than men to have an adverse credit outcome.

The study notes that not all causality can be shown. “Some portion of this association is likely explained by poor financial health leading to the development of additional chronic conditions, while another portion may be due to chronic disease causing additional financial burden and worsened credit outcomes,” the study reads in part. “We find that both medical and nonmedical debt in collections rise with increased chronic disease burden, although medical debt in collections rises faster, suggesting that both direct costs (the out-of-pocket expense of medical care) and indirect costs (effects of illness on an individual’s ability to earn income) may have important associations with adverse financial outcomes.”

Researchers note that if further research shows that financial distress leads to additional chronic disease, policymakers should consider new social safety net policies to reduce poverty rates and incorporate improvements in physical health—and concomitantly lower health care spending—as a benefit of antipoverty programs. “If chronic disease diagnoses are directly leading to adverse financial outcomes, then improving commercial insurance benefit design would be warranted to provide additional protection from out-of-pocket medical expenses, particularly for conditions identified as being costly for patients,” the study reads in part.

Becker NV, Scott JW, Moniz MH, Carlton EF, Ayanian JZ. Association of chronic disease with patient financial outcomes among commercially insured adults. 

. Published online August 22, 2022. doi:10.1001/jamainternmed.2022.3687

The more chronic conditions patients have, the more likely they are to be in debt.

Medical Debt Is Tied to Multiple Chronic Conditions 

Patients with acute myeloid leukemia (AML) who have undergone bone marrow transplant (BMT) may be at an increased risk of subsequent neoplasms, diabetes, cataracts, venous thromboembolism, or joint replacements, according to findings published in the

. Further, BMT survivors have a history of chronic graft-vs-host-disease (cGVHD), their chance of developing these chronic conditions increases significantly, underscoring the value of close monitoring and multidisciplinary survivorship care in the posttransplant setting.

At 20 years posttransplant, the incidence of severe or life-threatening conditions was 68% among BMT survivors. Compared with their siblings, BMT survivors were significantly more likely to have a grade 3 or 4 chronic health condition (54.9% vs 28.5%) and significantly more likely to have multiple conditions (23.9% vs 7.8%; 

 < .001). Moreover, survivors were more likely to experience poor general health (odds ratio [OR], 3.8; 95% CI, 2.8-5.1), limited activity (OR, 3.7; 95% CI, 3.0-4.5), and functional impairment (OR, 2.9; 95% CI, 2.3-3.6).

“This study provides a global assessment of the burden of morbidity in survivors of AML treated with BMT and finds that, compared with unaffected individuals, BMT survivors are at increased risk for severe/life-threatening health-related complications across nearly all domains,” wrote lead author Saro H. Armenian, pediatric hematologist oncologist and director of the Center for Survivorship and Outcomes with the Hematologic Malignancies Research institute at City of Hope, and co-investigators. “The overall burden of chronic conditions increases sharply with longer follow-up, contributing to a rising incidence of non-relapse mortality.”

Bone marrow transplantation has become a standard treatment for many patients with AML, as it has been established as a curative treatment option. In the United States, the number of patients with AML who undergo a BMT each year is estimated to be around 3,500 and thanks to improvements in transplantation strategies, supportive care, and increased donor source availability, the number of patients with AML continue to increase annually, with more older patients now able to receive this treatment.

It is anticipated that the number of survivors treated with a bone marrow transplant will surpass 40,000 by 2030, thus, ensuring that BMTS survivors are able to live long and healthy lives after their transplant is becoming a critical component of leukemia care.

Previous studies have attempted to characterize the later effects of BMT are generally limited to patients who underwent BMT during their childhood years and were primarily centered on qualities affecting health-related quality of life rather than morbidity. The objective behind this study, therefore, was to understand the associated between BMT-related risk factors and chronic health conditions among BMT recipients, as well as define the overall and cause-specific late mortality rate on survivors throughout various points post-transplant.

Investigators assessed 840 BMT survivors and 1,310 siblings, the mean number of years between BMT and questionnaire completion was 8.2 years. Most patients (86.1%) had undergone allogenic BMT as opposed to autologous BMT. Fifty-two percent of patients had receive a nonmyeloablative or reduced-intensity conditioning. Melphalan- or fludarabine-based regimens were the most popular conditioning (51.0%), followed by a total-body irradiation -based regimen (38.7%).

At 10 years of follow-up, the cumulative incidence of severe, life-threatening, or fatal chronic health conditions was 55% among AML survivors. Specifically, the percentage of patients with subsequent malignant neoplasm was 29.5%, 15.6% developed cataracts, 10.1% required joint replacement, 8.3% experienced venous thromboembolism (8.3%), and 6.8% developed diabetes. Among patients who developed subsequent malignant neoplasm, the most common manifestations included skin cancer or melanoma (68.9%), breast cancer (6.7%), and colon cancer (1.8%).

According to a multivariable, analysis, patients with a history of cGVHD were also more likely to develop grade 3 or worse conditions (HR, 1.3; 95% CI, 1.0-1.6), as well as multiple grade 3 or worse conditions (HR, 2.4; 95% CI, 1.6-3.5).

Moreover, the 5-year survival rate among patients who survived at least 2 years posttransplant was 76.4%. The rate of relapse-related mortality (RRM) was shown to plateau at 30%, although the rate of non-RRM continued to increase, overlapping with RRM at 12 years post BMT and reaching nearly 50% by 30 years posttransplant.

Individuals with AML who underwent a bone marrow transplant are at an increased risk of developing subsequent neoplasms, and other chronic health conditions. 

Nurse Navigation