A cancer diagnosis is difficult to process at any age. But fighting the disease as an adolescent or young adult (AYA) presents unique challenges. 

A patient is considered to be an AYA if diagnosed between the ages of 15 and 39 years.

 In 2022, the number of new AYA cancer diagnoses rose to 87,050, which is 4.5% of new cancer cases at any age, representing a steady increase over the previous 2 decades.

 Some of the most common cancers in this patient population are leukemia and tumors of the brain and other nervous system tumors (ONS), the breast, cervix, and testis.

Although the possibility of death is an important topic to broach with AYA patients, other areas of concern are often overlooked.

 Cancer disrupts the most formative years in the lives of young adults and can impact their emotional, cognitive, and social development.

 It can wreak havoc with their current and future plans, self-image, education, career opportunities, relationships, and ability to have children.

Managing these upheavals is an unmet need for AYA patients, and clinicians can play a key role in helping them navigate the cancer trajectory, including remission and recovery. Body image can influence a person’s self-esteem and interaction with others.

 The physical changes caused by cancer and its treatment can negatively impact the self-image of all patients, but it is largely underemphasized in the AYA population.

 The results of a recent qualitative study showed that 45% of AYAs indicated that treatment-related complications, including alopecia, scarring, and weight gain, were detrimental to their body image and self-esteem.

Sexual dysfunction and concerns about fertility are also felt particularly strongly by AYA patients.

 Not only are they worried about mortality and disease recurrence, but many of the treatments they receive can lead to sterility. Patients whose reproductive organs are removed, who receive metal-based chemotherapy regimens, or who undergo radiation are at high risk of posttreatment infertility. But they do not have to be. Cryopreservation allows for pretreatment harvesting of eggs and sperm. Clinicians should recognize how a cancer diagnosis may impact an AYA’s family planning and initiate candid conversations about their options to help them have a family of their own when they’re ready. 

AYAs diagnosed with cancer also require financial counseling because they experience financial toxicity more than any other age group.

 Compared with older patients, many AYAs are underinsured and often receive their diagnosis just as they are transitioning to financial independence. In addition, they are usually unable to tap into the resources—such as retirement funds or home equity—that older individuals may be able to access.

 Although more than half of AYAs have reported that they would benefit from financial counseling and assistance, almost none receive it unless they know to ask for the specific resources dedicated to helping them.

Finally, learning that treatment is working does not lessen the potential for post-treatment challenges.

 AYA cancer survivors are at an increased risk of developing secondary malignant neoplasms (SMNs), most commonly breast, gastrointestinal, genital, and skin cancer.

 Additional challenges for AYAs include continuing school after treatment or reentering the workforce or the dating pool.

This can be an exceptionally lonely time for AYAs, as they may not have a support system that understands what they are going through. Others may feel as if they are expected to simply be happy about having survived, which creates a sense of guilt and anxiety about conflicting thoughts and emotions they may have.

Clinicians working with this population must address not only traditional issues related to cancer but also those that come about due to the patient’s life stage. It is therefore important to develop programs that are geared specifically toward this population and include evidence-based, patient-centered multidisciplinary care.

 Because AYAs can often feel alone during their journey, events, activities, and support groups that center around the AYA cancer experience are also very useful.

Health care professionals can better serve AYA patients by recognizing the special challenges they face in addition to the social and psychological difficulties that come with cancer. They should feel comfortable discussing these issues with patients and be aware of the resources that exist, within their institution and in the community at large, to support the complex needs of this population.

John Stoddard Cancer Center. Hope for AYA cancer patients & survivors. UnityPoint Health. March 6, 2015. Accessed October 7, 2022. 

Miller KD, Fidler‐Benaoudia M, Keegan TH, Hipp HS, Jemal A, Siegel RL. Cancer statistics for adolescents and young adults. 

. 2020;70(6):443-459. doi:10.3322/caac.21637

Cancer Stat Facts: Cancer among adolescents and young adults (ages 15–39). National Cancer Institute. Surveillance, Epidemiology, and End Results Program. 2021. Accessed October 7, 2022. 

Silin C. Help AYA survivors and patients with cancer navigate infertility. ONS Voice. October 2, 2020. Accessed October 7, 2022. 

Brierley MEE, Sansom‐Daly UM, Baenziger J, McGill B, Wakefield CE. Impact of physical appearance changes reported by adolescent and young adult cancer survivors: a qualitative analysis. 

. 2019;28(4): e13052. doi:10.1111/ecc.13052

Tort-Nasarre G, Pollina Pocallet M, Artigues-Barberà E. The meaning and factors that influence the concept of body image: systematic review and meta-ethnography from the perspectives of adolescents. 

. 2021;18(3):1140. doi:10.3390/ijerph18031140

Kaddas HK, Pannier ST, Mann K, et al. Age-related differences in financial toxicity and unmet resource needs among adolescent and young adult cancer patients. 

. 2020;9(1):105-110. doi:10.1089/jayao.2019.0051

Second cancers related to treatment. American Cancer Society. Updated February 1, 2020. Accessed October 7, 2022 

Perez S, Greenzang KA. Completion of adolescent cancer treatment: excitement, guilt, and anxiety. 

. 2019;143(3):e20183073. doi:10.1542/peds.2018-3073

Wong AWK, Chang TT, Christopher K, et al. Patterns of unmet needs in adolescent and young adult (AYA) cancer survivors: in their own words. 

. 2017;11(6):751-764. doi:10.1007/s11764-017-0613-4

Articles

Adolescents and young adults who have cancer also have a negative body image, financial toxicity, and concerns about family planning.

Challenges Faced by Adolescent and Young Adult Patients With Cancer

Jessica MacIntyre, ARNP, NP-C, AOCNP, executive director of Clinical Operations for Sylvester Comprehensive Cancer Center, discusses a nurse-led program designed to initiate early referrals of patients with cancer to nutrition services.

MacIntyre oversees various programs including oncology social work, cancer support services, nurse navigation, cancer survivorship, cancer prevention, and phase I clinical research operations. She recently presented at the 47th Annual Oncology Nursing Society Congress about a navigation nurse-driven protocol, which resulted in early referral and intervention to nutrition services.

Timely referral to support is linked to better outcomes; however, nutrition referrals are not typically made prior to the first appointment with the oncology team. This protocol, MacIntyre explains, sought to overcome that barrier by empowering nurse navigators to make referrals based on specific criteria, including a diagnosis of head and neck, thyroid, or pancreatic cancer, verbalize an interest in a nutrition consult, receiving total parenteral nutrition or enteral nutrition, and/or report unintentional weight loss of: 1% to 2% total body weight in 1 week, 5% of total body weight in 1 month, or at least 7.5% body weight in 3 months.

MacIntyre J, Lovan P, Torrents S. Integrating early referrals to oncology nutrition services through the cancer navigation program: the experience at Sylvester Comprehensive Cancer Center (SCCC). Presented at: 47th Annual Oncology Nursing Society Congress; April 27-May 1, 2022; Anaheim, CA. Abstract P360.

Videos

Jessica MacIntyre, ARNP, NP-C, AOCNP, discusses empowering oncology nurse navigators to refer patients undergoing chemotherapy or radiation therapy to nutrition services. 

Jessica MacIntyre on Utilizing Nurse Navigators to Connect Patients to Nutrition Services

Open communication and regular check-ins are a key component of the advanced practice fellowship at Sylvester Comprehensive Cancer Center, explained Jessica MacIntyre, APRN, NP-C, AOCNP.

MacIntyre, executive director of clinical operations at Sylvester, spoke with Oncology Nursing News about how the fellowship strives to create bonds between the fellows and establish a feeling of trust among the blossoming nurse practitioners. She explains how this bond is the key difference between participating in a fellowship after receiving NP certification vs going straight out into practice.

“We go through their progress and we check off everything. [We see] where they're at in each area, making sure that they're on point to meet the requirements,” she said. “So, we do get to know them very well. We do understand and recognize that a lot of these things are not easy for them, and [we] want to make sure that we support them as much as possible. We try to maintain a very open line of communication with them, because we want to make sure that if they're struggling with something they can tell us right away.”

“The difference between the fellowship versus actually going out into real practice,” she added. “I think a lot of people fear saying that they don't know something, saying that they need help, especially if you're talking to a physician colleague instead of like a peer colleague. So, we really develop that mentorship over time.”

Jessica MacIntyre, APRN, NP-C, AOCNP, explains how Hematology/Oncology Nurse Practitioner Fellowship at Sylvester Comprehensive Cancer Center prepares fellows for success. 

Personal Bonds Make NP Fellowship Programs Advantageous Choice For Recent Graduates

The Hematology/Oncology Nurse Practitioner Fellowship at Sylvester Comprehensive Cancer Center in Miami, Florida, has successfully retained 100% of its fellows, shared Jessica MacIntyre, APRN, NP-C, AOCNP.

MacIntyre, executive director of clinical operations at Sylvester, spoke with Oncology Nursing News® about how the fellowship operates and their goal as a program. She also explained that the program seeks to identify concentrations of interests for its fellows and allows them the opportunity to rotate through them as an elective.

“It’s been a great program that actually started from a gap we noticed and now we’re looking at expanding to other subspecialties. We have done a stem cell track, as well, so people who really wanted to somewhat focus just on stem cell, they still got the full rotations and experience, but at the end, and this is with every fellow if we identify an area that they like to concentrate in, the last 3 months are really for that, it’s kind of like an elective; they focus on an area they would like to subspecialize in. Or if there’s an opportunity for a job there, and they are interested, they can rotate there at the end, so they can sort of transition slowly with that group as well.”

Jessica MacIntyre, executive director of clinical operations at Sylvester Comprehensive Cancer Center, explains how the small market for experienced oncology nurse practitioners prompted their institution to design a successful Hematology/Oncology Nurse Practitioner Fellowship.

Sylvester Comprehensive Cancer Center’s NP Fellowship Successfully Retains 100% of Fellows 

The Hematology/Oncology Nurse Practitioner Fellowship at Sylvester Comprehensive Cancer Center in Miami, Florida, is a 52-week training program, explained Jessica MacIntyre, APRN, NP-C, AOCNP.

MacIntyre, executive director of clinical operations at Sylvester, spoke with Oncology Nursing News® about how the fellowship operates and their goal as a program. She also explained that while some nurse practitioners may want to cross over to oncology through the program, the fellowship is really geared towards recent graduates who have just been certified as nurse practitioners.

“We provide them rotations, across the health system in different subspecialties of oncology, so they can rotate through breast and GI, so they get solid tumor, hematology, stem cell, inpatient outpatient, and as an introduction, we actually have them rotate through our cancer care services, our social services, palliative care, the full scope of what it is to take care of on oncology patient and what are the resources and knowledge they need to be successful after they complete the program.”


The Hematology/Oncology Nurse Practitioner Fellowship is a yearlong program which seeks to train those who have recently received their NP certification. 


Jessica MacIntyre, DNP/MBA, NP-C, APRN, AOCNP

Articles

Challenges Faced by Adolescent and Young Adult Patients With Cancer

Jessica MacIntyre on Utilizing Nurse Navigators to Connect Patients to Nutrition Services

Personal Bonds Make NP Fellowship Programs Advantageous Choice For Recent Graduates

Sylvester Comprehensive Cancer Center’s NP Fellowship Successfully Retains 100% of Fellows

Oncology Nurse Practitioner Fellowship Gears Itself Towards Recent Graduates