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Prof. Dr. Mustafa Özdoğan · Medical Oncologist
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How Should Cancer-Related Distress, Anxiety and Feelings of Helplessness Be Treated?

How Should Cancer-Related Distress, Anxiety and Feelings of Helplessness Be Treated?
In this article

A cancer diagnosis divides a life into two closely connected halves: "before diagnosis" and "after diagnosis". Yet the most uncertain bridge between these two sides is often something that never enters the medical record: distress. Version 1.2026 of the NCCN (National Comprehensive Cancer Network) Distress Management Guidelines, published this January, now describes the psychosocial burden experienced by people with cancer not as "problems", but as "concerns" ; it removes the term "dementia" and replaces it with "mild/major neurocognitive disorder", in line with DSM-5. These seemingly simple terminology changes actually symbolise an important paradigm shift: language that avoids stigma, centres the patient and encourages disclosure. This matters because approximately half of people with cancer experience severe or prolonged distress; it is not merely a matter of "morale", but a clinical problem that directly affects treatment adherence and survival.

TERMINOLOGY NOTE: What Does "Distress" Mean? How Does It Differ from Stress?

The word "distres", which may look like a foreign term in Turkish medical literature, represents an important conceptual distinction. Stress is a neutral term; it can be positive (eustress: motivation, excitement or the tension of preparing for an examination) or negative (distress: anxiety, helplessness or exhaustion). According to this distinction, conceptualised by Canadian endocrinologist Hans Selye in the 1970s, all distress is a form of stress, but not all stress is distress. Distress describes the experience arising from a stressor that is negative, pathological and requires clinical intervention .

This is precisely why the NCCN prefers, instead of "cancer-related stress", the term "cancer-related distress" : while "stress" suggests "a difficult but manageable situation", "distress" emphasises a negative experience that is clinically significant and requires professional support. The closest equivalent in Turkish is "sıkıntı" ; however, because this word has a very broad meaning in everyday language, including boredom and financial difficulty, it does not adequately convey the clinical weight. In this article, we use "distress" in line with the international literature, sometimes alongside the Turkish term "sıkıntı". The abbreviation CRD used in the text stands for "cancer-related distress".

What Is Cancer-Related Distress? Defining the Concept

According to the NCCN definition, cancer-related distress (CRD) is a multidimensional, unpleasant experience of a psychological (cognitive, behavioural or emotional), social, spiritual and/or physical nature. It can interfere with a person's ability to cope effectively with cancer, its physical symptoms and its treatment. Beyond this academic definition, however, distress appears in very concrete ways in everyday life: fatigue, persistent worry, sadness, fear, anxiety, loneliness, financial stress and uncertainty about the future.

As Dr. Jennifer Stevens, a triage and admissions nurse at Agrace Hospice in Madison, Wisconsin, explains, cancer-related distress affects almost every person with cancer to some extent, on a spectrum ranging from "simply feeling sad" to an "existential crisis". When it exceeds the threshold defined by standard assessment tools, distress is considered "clinically significant". Approximately 50% of patients experience severe or prolonged distress — in other words, half of patients, not merely a small minority, carry this burden.

%50 Proportion of people with cancer experiencing severe or prolonged distress
%62 The most common source of distress in North America: fatigue
%58 The second most common source of distress: worry/anxiety
%48 The third most common source: feelings of sadness
IMPACTS

Why Does It Matter? The Wide-Ranging Effects of Distress

Distress is not merely a matter of "morale". As shown in a systematic review published in 2024, distress is strongly associated with clinically meaningful outcomes: a higher symptom burden, greater healthcare use, faster disease progression, increased mortality and reduced treatment adherence. This last point is particularly important: successful cancer treatment depends heavily on the patient following the treatment regimen; a distressed patient may miss appointments, take medication irregularly or postpone follow-up tests.

As Prof. Brad Zebrack of the University of Michigan emphasises, distress can disrupt relationships and social participation, leading to social isolation . The patient's ties with family, friends and colleagues weaken — yet social support is precisely what is most needed during the cancer journey. As Prof. Sophia Kustas Smith of Duke University School of Nursing notes, distress also increases the risk of depression, anxiety and post-traumatic stress disorder (PTSD) . These effects can extend into survivorship and affect both the patient and caregivers.

A Map of the Clinical and Psychosocial Effects of Cancer-Related Distress

A multilayered negative cycle whose elements reinforce one another, rather than a single symptom

Distress → Multidimensional Clinical Outcomes Cancer-Related Distress (CRD) 50% severe/prolonged ⬆ Symptom Burden Pain, fatigue, sleep disturbances ⬇ Treatment Adherence Missed appointments, irregular medication use ⬆ Healthcare Use (emergency care, etc.) Emergency visits and hospital admissions increase ⬇ Social Connections Isolation, weakened relationships ⬆ Psychiatric Risk Depression, anxiety, PTSD ⬆ Disease Progression & Mortality The ultimate outcome directly affecting survival
NCCN 2026 UPDATES

NCCN Guideline Update: "Concerns", Not "Problems"

The changes in the NCCN Distress Management Guidelines published in January 2026 may appear superficial, but the underlying philosophy is profound. Two major terminology changes stand out:

📝 Change 1: "Problems" → "Concerns"

The word "problems", used to describe sources of distress, has been replaced by "concerns".

  • 🎯 Aim: Encourage disclosure
  • "Problem" carries a "pathological" connotation
  • "Concern" emphasises normal human experience
  • Makes it easier for patients to accept help
  • Aims to reduce stigmatisation
🧠 Change 2: The Term "Dementia" Has Been Removed

The term "dementia" has been removed and replaced with "mild/major neurocognitive disorder", in line with DSM-5.

  • 🎯 Aim: Normalise cognitive symptoms
  • The term "dementia" can frighten patients
  • It discourages disclosure of cognitive difficulties
  • Alignment with DSM-5 enables more sensitive assessment
  • Facilitates referral to neuropsychology
"The NCCN language updates reflect a shift towards more patient-centred and less stigmatising terminology; 'concerns' encourages disclosure, whereas terms such as 'dementia' may discourage it." — Prof. Sophia Kustas Smith, PhD, MSW (Duke University School of Nursing, Duke Cancer Institute)

Prof. Zebrack emphasises that this language change encourages understanding distress as a continuum, which may require different "doses" of intervention at different times. Stevens notes that the clinical impact of the change remains uncertain — many cancer centres will continue using the old version because of integration into electronic health records (EHR) — but that research and quality-improvement studies using the new PL (Problem List) will increase in the coming years.

SCREENING AND INTERVENTION

Screening and Management: Evidence-Based Approaches

According to NCCN and American Society of Clinical Oncology (ASCO) guidelines, the highest standard of quality includes a comprehensive psychosocial assessment at diagnosis — carried out by a trained mental health professional, such as an oncology social worker — and ongoing clinical observation and distress screening throughout treatment and during the transition to post-treatment survivorship . Screening should be a process, not a "one-off" assessment.

One practical tool is the Distress Thermometer Problem List (PL) . This simple visual scale asks patients to rate their distress from 0-10 and indicate the areas in which they are struggling. Scores of 4 or above are generally considered the threshold for further assessment. However, as Dr. Stevens points out, research has shown that screening and referral alone are insufficient for most patients — the focus is now shifting from screening to management and follow-up after care .

📋
1. Screening
Distress Thermometer PL · 0-10 scale
→
🔍
2. Assessment
Identify sources: physical, emotional, social, practical, spiritual
→
🧩
3. Referral
Multidisciplinary team: nurse, social worker, psychologist
→
💬
4. Intervention
CBT, ACT, mindfulness, meaning-centred therapy
→
🔄
5. Follow-Up
Ongoing observation, reassessment according to treatment phase
EVIDENCE-BASED INTERVENTIONS

Which Interventions Work?

Several approaches have demonstrated effectiveness in distress management. Prof. Smith emphasises that the strongest evidence base supports the following interventions:

🧠 Cognitive Behavioural Therapy (CBT)

Cognitive Behavioural Therapy — recognising and restructuring negative thought patterns. The approach with the strongest evidence base.

🌱 ACT

Acceptance and Commitment Therapy — learning to accept emotions rather than fight them, and to live according to one's values.

🧘 Mindfulness

Mindfulness-based interventions — reducing anxiety by focusing on the present moment.

✨ Meaning-Centred

Meaning-centred therapies — finding purpose in life, particularly in advanced cancer and existential distress.

In addition, psychoeducational support programmes, support with decision-making and problem-solving, peer support and referral to community-based cancer support organisations, such as Cancer Support Community and Blood Cancer United — formerly the Leukemia and Lymphoma Society — are among evidence-based approaches. For patients experiencing moderate-to-severe anxiety, PTSD or a depressive disorder, pharmacological treatment such as SSRIs may also be appropriate.

DIGITAL TRANSFORMATION

Digital Interventions: Addressing the Access Problem

Mental health workforce shortages, long waiting lists and geographical inequalities are worsening access problems in distress management. Prof. Smith notes that digital solutions are beginning to bridge this gap: mobile apps for cancer distress, web-based CBT programmes and hybrid coaching approaches. The Duke team's Cancer Distress Coach mobile app was used in a pilot study to manage post-traumatic stress symptoms and was found acceptable.

Emerging developments include the following: for personalised interventions, stepped-care and triage approaches; the expansion of digital and hybrid psychosocial interventions; integration into electronic health records of AI-assisted screening tools; and risk-prediction models for individualised distress management. These developments could transform the understanding of "standard care" in oncology practice in the coming years.

THE NURSE'S ROLE

The Central Role of the Oncology Nurse

Both Prof. Smith and Dr. Stevens repeatedly emphasise the central role of oncology nurses in distress management. According to Prof. Smith, oncology nurses are the first peopleto notice emotional changes, shifts in coping capacity or early signs of becoming overwhelmed. Nurses can offer brief but effective strategies: motivational interviewing, supportive listening and coaching in basic coping skills.

"Oncology nurses are uniquely positioned to ensure that patients receive appropriate care for managing distress." — Dr. Jennifer Stevens, PhD, RN, OCN (Agrace Hospice — Triage and Admissions Nurse)

According to research cited by Dr. Stevens, people with cancer are more likely to accept interventions delivered by nurses. This results from the close relationship nurses build with patients during day-to-day care. The deliberate use of the therapeutic relationship — building trust, validating emotions, normalising the experience of CRD and making space for reflection and meaning — is an effective starting point.

Smith also emphasises the importance of a trauma-informed approach — a perspective centred on safety, trust and patient empowerment. Appropriate assessment and care planning require attention to cultural, linguistic and contextual factors so that distress is understood in a meaningful and accessible way for each patient.

OPEN QUESTIONS

Current Gaps and Unresolved Issues

Despite the NCCN 2026 updates, significant gaps in distress management remain:

🔴 Workforce Shortages and Long Waiting Lists

There are not enough mental health professionals. Even when a patient screens positive for distress, they may have to wait months to access an appropriate mental health professional.

🔴 Underrecognition of Trauma and PTSD

Trauma symptoms and PTSD are insufficiently recognised, particularly in high-risk patient groups: young adults, people undergoing repeated treatments and those with intensive-care experience.

🟡 Caregiver Distress Is Neglected

The distress of caregivers alongside a person with cancer — a spouse, parent or adult child — may differ from, and sometimes be more severe than, the patient's distress, yet it is not addressed systematically.

🟡 Financial Toxicity

The economic burden created by cancer treatment — "financial toxicity" — remains an important source of emotional burden and is not systematically addressed in most centres.

🟡 Structural Inequalities

Ethnic minorities, patients with low incomes, people in rural areas and those facing language barriers are systematically disadvantaged in accessing timely psychosocial support.

THE PERSPECTIVE FROM TÜRKİYE

Managing Cancer-Related Distress in Clinical Practice in Türkiye

Distress management remains a developing field in oncology practice in Türkiye. Although support from psychologists and psychiatrists is available in large academic centres, medical schools and private oncology hospitals, access is very limited in medium-sized and smaller centres. The Distress Thermometer PL is not widely used in routine screening, and patients often receive no systematic distress assessment beyond being asked "how are you?".

There are several structural reasons for this. First, oncology nurses' workload is very heavy, and finding enough time for psychosocial assessment in addition to existing clinical care duties is difficult. Second, the number of patients per oncologist is high; there is no realistic time within a consultation to assess emotional wellbeing. Third, psycho-oncology is a relatively new and developing subspecialty in Türkiye, and there are not yet enough specialists. Fourth, stigma remains culturally powerful: many patients may withdraw when offered "mental health support".

There are, however, promising developments. Some large private cancer hospitals, such as Memorial Cancer Centers, are integrating multidisciplinary psycho-oncology teams into clinical workflows; the work of the Turkish Psycho-Oncology Association is increasing the field's capacity each year; and digital interventions, particularly Turkish-language mobile apps and web-based programmes, offer promise for overcoming access barriers. Brief distress-screening skills training for oncology nursesis a particularly feasible strategy in resource-limited settings such as Türkiye and should be expanded urgently.

🎓 DROZDOGAN Academy — Commentary and Discussion

CANCER-RELATED DISTRESS · NCCN 2026 · PSYCHO-ONCOLOGY · STIGMA · CLINICAL IMPLICATIONS

Why These Updates Matter

The NCCN 2026 distress management update may look like a simple terminology change at first: "concerns" instead of "problems", and "mild/major neurocognitive disorder" instead of "dementia". Yet the philosophy underlying these changes reflects a paradigm shift in oncology care: an approach centred on seeing the whole person, not just the tumour. Particularly in societies such as Türkiye, where cultural stigma is strong, the word "problem" may make patients feel defective, whereas "concern" legitimises normal human experience. This language change may seem small, but in daily interactions with thousands of patients it can have a snowball effect. In oncology practice, words are treatment — the words chosen by doctors and nurses affect patients' capacity to disclose, their treatment adherence and ultimately their clinical outcomes. This article uses concrete data to demonstrate that distress is not merely a "side effect", but a clinical phenomenon that directly affects survival.

Strengths

The NCCN 2026 guideline update has several important strengths. First, by aligning terminology with DSM-5, it strengthens the shared language between psychiatry and oncology, which is crucial for facilitating multidisciplinary care. Second, the guideline shifts towards a patient-centred framework: patients' experiences and perspectives, not merely clinical categories, take centre stage. Third, attention is drawn not just to screening but also to management and follow-up after care — acknowledging the inadequacy of the earlier "screen and refer" approach. Fourth, the role of oncology nurses is explicitly recognised, which is particularly important in resource-limited settings. Fifth, incorporating modern approaches such as digital interventions, AI-assisted screening and stepped care gives the guideline a forward-looking perspective. Sixth, it openly states that gaps remain in areas such as caregiver distress, trauma-informed care and financial toxicity; this self-critical stance enhances the guideline's honesty.

Limitations and Open Questions

A critical assessment reveals several important limitations. First, the clinical impact of the terminology changes has not been empirically demonstrated — prospective studies have not yet shown whether using "concerns" rather than "problems" actually encourages disclosure or improves patient outcomes. It is a reasonable hypothesis, but the evidence has not yet emerged. Second, many cancer centres may continue using the old version because of integration into electronic health records (EHR), so the new guideline's "real-world" impact may remain limited. Third, the guideline recommendations focus primarily on well-resourced care systems in high-income countries; applicability in low- and middle-income countries may be problematic. Fourth, whether adapted CBT, ACT and other psychotherapies are equally effective across different cultural contexts remains an open question: directly transferring studies conducted in the US to Turkish society may be unrealistic. Fifth, the biological mechanisms of distress — the connection with social genomics and inflammation mentioned by Zebrack — are not yet established at the level of clinical practice; this requires future research. Finally, digital interventions are hoped to address access barriers, but digital inequality affecting older patients, low-income groups and people with limited digital literacy must not be overlooked.

Implications for Clinical Practice

This update has concrete messages for oncology practitioners in Türkiye. First, systematic psychosocial assessment for every newly diagnosed patient with cancer should be standard. This need not be complex or time-consuming; brief tools such as the Distress Thermometer PL can be administered in 2-3 minutes. Second, throughout treatment, repeated screening should be carried out, because distress fluctuates with treatment phases. Third, for oncology nurses, brief psychosocial skills training in motivational interviewing, supportive listening and coping-skills coaching should be expanded, filling a critical gap in centres without specialist psychology/psychiatry resources. Fourth, language matters: open-ended, normalising questions such as "What have you been experiencing lately?" should be preferred to "Are you sad?". Fifth, in cases of severe or prolonged distress, pharmacological treatment — such as SSRIs in appropriate cases — should be recognised as something to initiate at the right time rather than hesitantly. Sixth, including caregivers in distress screening by asking how the spouse, parent or child is doing matters for the health of both the patient and the family. Finally, discussing financial toxicity is not taboo; asking patients "Are you concerned about treatment costs?" is necessary to open pathways to practical assistance.

Questions for the Future

The critical questions ahead are these: will prospective studies demonstrate the effects of the NCCN 2026 language changes on patient outcomes — treatment adherence, quality of life and survival? When will routine use of the Distress Thermometer PL, integrated into electronic health records, become standard in large oncology centres in Türkiye? Can psychotherapy protocols and mobile apps validated in Turkish be made more widely available? Can the number of psycho-oncology specialists in Türkiye be increased, and will recognition of the field as a medical subspecialty come onto the agenda? Can AI-assisted screening tools realistically help address workforce shortages in the short term, or will they create new inequalities? Will research into the social genomics of people with cancer, including work by Slavich and colleagues, play a role in clinical practice, for example through biomarker-based risk stratification for distress? How might Türkiye's reimbursement system evolve to reduce financial toxicity, especially for cancers requiring long-term treatment? Finally, how can caregiver distress be addressed through a culturally specific approach in a society such as Türkiye, with its close family ties? Answers to these questions will determine the quality of cancer care in Türkiye over the coming decades.

Scientific References

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This article was created using various editorial tools, including artificial intelligence, as part of the process. It was reviewed by human editors before publication.

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