Survivorship Considerations and Management in the Adolescent and Young Adult Sarcoma Population: A Review
Abstract
:1. Introduction
2. Treatment-Related Late Effects
2.1. Long-Term Morbidities from Local Treatment
2.2. Long-Term Morbidities from Systemic Treatment
2.2.1. Cardiovascular Disease
2.2.2. Endocrine Conditions
3. Secondary Malignant Neoplasms (SMNs)
4. Psychologic Effects
4.1. Mental Health
4.2. Body Image
4.3. Health-Related Quality of Life (HRQoL)
5. Fertility and Sexual Function
5.1. Females
5.2. Males
5.3. Sexual Function
6. Social Issues
6.1. Marriage
6.2. Career
6.3. Education
7. Racial and Socioeconomic (SES) Disparities
8. Management of Long-Term Effects
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- Focused physical therapy to reduce morbidity and preserve functionality and strength for patients undergoing surgery and RT for extremity sarcoma.
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- Lifelong monitoring of kidney function in patients requiring nephrectomy to monitor development of CKD in remaining kidney.
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- Appreciation of possible development of late-onset adrenal insufficiency in patients who underwent adrenalectomy and appropriate screening based on reported symptoms to include fatigue and diminished mental capacity.
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- Close monitoring of cardiovascular disease. Per NCCN, high-risk survivors (received ≥250 mg/m2 of anthracycline or ≥30 Gy of chest radiation) undergo an echocardiogram every two years. Low-risk survivors (received ≥100 mg/m2 of anthracycline or ≥15 Gy of chest radiation) should undergo an echocardiogram every 5 years [5].
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- Deliberate prevention of cardiovascular risk factors and coaching to maintain an appropriate goal weight, blood pressure and heart-healthy diet. Smoking cessation should be strongly encouraged. Patients should partake in regular exercise, but this may need supervised modification with physical therapists depending on surgical/RT co-morbidities.
- •
- Patients are at risk of developing a wide range of endocrinopathies. Patient-reported symptoms related to possible endocrine dysfunction should prompt an appropriate workup and referral to an endocrinologist. As some of these symptoms can be nebulous, providers treating AYA sarcoma survivors should have a high index of suspicion of endocrine disorders.
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- Per NCCN, screening for secondary malignant neoplasms involves the same surveillance for the primary cancer type. Both oncologists and primary care providers should have a heightened focus on AYA sarcoma survivors due to their increased risk of secondary neoplasms depending on the treatment received.
- •
- Patients diagnosed with genetic syndromes that predispose them to an elevated risk of sarcomas and other malignancies, such as Li-Fraumeni, neurofibromatosis type 1, Rb1 gene mutations and many others, should follow NCCN guidelines for surveillance. Often this is rigorous and includes several screening modalities, which may need to occur on an annual basis. All such patients should be referred to a genetic counselor.
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- There are known genetic mutations that also predispose survivors to an increased risk of late effects. The close multi-disciplinary monitoring of these patients should occur with coordinated efforts between a clinician and genetic counselors.
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- AYA sarcoma survivors are at an increased risk for mental health conditions, body dysmorphia and a decreased quality of life. It is imperative for the clinician to recognize that while cancer-directed therapy may be complete, the impacts of their diagnosis are rarely “behind” them. Clinicians should have a low threshold for referral to psychologic counseling services or psychiatric specialists, even years after the diagnosis.
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- Improved social support has been shown to be protective against psychologic late effects. A careful social history should be taken at each visit to assess survivor’s resources and risk.
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- Once again, the American Society of Clinical Oncology recommends that health care providers discuss the possibility of infertility and the option of fertility preservation with this population of patients before treatment is initiated [89].
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- Providers should discuss the sexual function of AYA sarcoma survivors without stigma. If concerns are identified, referral sources may include gynecology, urology, physical therapy (to include pelvic floor PT), psychology and sexual medicine or therapy either for the patient individually or with their partner.
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- A sarcoma diagnosis in the AYA populations impacts developing romantic relationships, entering the workforce and resuming a higher education.
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- Married AYA sarcoma survivors report higher HRQoL scores than their non-married counterparts. A careful social history should be taken, and if barriers to the development of stable relationships are suspected in a patient, therapy should be considered.
- •
- There are some resources available regarding employment for survivors. In the United States, cancer survivors are protected by the Americans with Disabilities Act. Cancer and Careers and the Job Accommodation Network are two organizations in the US that specialize in reintegrating cancer survivors into the workforce. (The authors of this manuscript are not associated with either group or their sponsors.)
- •
- Difficulties with resuming higher education are multifactorial and include issues related neurocognitive changes, physical stamina and financial implications. In most cases, the return to education should be incremental and built back to full time courses. The early involvement of academic counselors is recommended to manage academic accommodations.
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- In recent years, patient advocacy groups have been formed for sarcoma survivors. In addition to being a resource for social support for survivors and their loved ones, such groups have begun to participate in clinical and survivorship research to improve short- and long-term outcomes for sarcoma patients [127].
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- The role of social media with regard to social support has been studied, yielding mixed results. Based on available data, it appears to both provide a connection as well as accentuate feelings of frustration and despair. Social media should be used with caution and should not provide a primary means of support [128].
- •
- Disparities in survival and quality of survivorship for AYA sarcoma survivors based on race, ethnicity and insurance status have been described. Providers should be aware of these disparities and work with qualified social workers to mitigate them.
- •
- While many large cancer centers have developed AYA-specific cancer divisions, such organizations are often not available at smaller centers. Disparities may prevent some survivors from accessing resources at larger centers. Therefore, the dissemination of information, education and conversation of survivorship management and resources are paramount for all providers caring for these survivors.
9. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Chemotherapy | Known Long-Term Effects |
---|---|
Doxorubicin | Cardiotoxicity, myelosuppression, radiation recall reaction, erythrodysesthesia, typhlitis, peptic ulcers, and GI bleeding, renal dysfunction, peripheral neuropathy, autoimmune disorders, sexual dysfunction and infertility |
Ifosfamide | Myelosuppression, GI intolerance, amenorrhea, fatigue, nephrotoxicity, secondary malignancy, neurotoxicity |
Gemcitabine | Myelosuppression, peripheral edema |
Docetaxel | Neuropathy, alopecia, cardiotoxicity, secondary malignancy, infertility |
Pazopanib | Cardiotoxicity, depigmentation, hepatoxicity, hypothyroidism |
Dacarbazine | Pulmonary toxicity, myelosuppression |
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Gunderson, A.; Yun, M.; Westlake, B.; Hardacre, M.; Manguso, N.; Gingrich, A.A. Survivorship Considerations and Management in the Adolescent and Young Adult Sarcoma Population: A Review. Curr. Oncol. 2025, 32, 214. https://doi.org/10.3390/curroncol32040214
Gunderson A, Yun M, Westlake B, Hardacre M, Manguso N, Gingrich AA. Survivorship Considerations and Management in the Adolescent and Young Adult Sarcoma Population: A Review. Current Oncology. 2025; 32(4):214. https://doi.org/10.3390/curroncol32040214
Chicago/Turabian StyleGunderson, Allison, Miriam Yun, Babe Westlake, Madeline Hardacre, Nicholas Manguso, and Alicia A. Gingrich. 2025. "Survivorship Considerations and Management in the Adolescent and Young Adult Sarcoma Population: A Review" Current Oncology 32, no. 4: 214. https://doi.org/10.3390/curroncol32040214
APA StyleGunderson, A., Yun, M., Westlake, B., Hardacre, M., Manguso, N., & Gingrich, A. A. (2025). Survivorship Considerations and Management in the Adolescent and Young Adult Sarcoma Population: A Review. Current Oncology, 32(4), 214. https://doi.org/10.3390/curroncol32040214