Skip to content
How It Works
Explore
Resources Ask a Question
Who It's For
Patients
Decode results, prep for appointments, weigh options.
Caregivers & advocates
Carry the research load for someone you love.
Providers & clinicians
Resources for patients in your practice.
Log In Ask a Question
PubMed This is a summary of 18 peer-reviewed journal articles Updated

Survivorship, Monitoring, and Managing Scan Anxiety

At a Glance

Living with Interstitial Lung Disease (ILD) requires long-term monitoring, typically involving PFTs every 3 to 6 months and yearly HRCT scans. Patients can improve their quality of life by engaging in pulmonary rehab, managing scan anxiety, and staying up to date on vaccinations.

Living with Interstitial Lung Disease (ILD) is a marathon, not a sprint. Because many forms of ILD are chronic conditions that require long-term management, your focus will gradually shift from seeking a diagnosis to maintaining your quality of life and monitoring for changes [1]. Survivorship in ILD means learning how to balance the necessity of medical surveillance with the need to live a full, active life.

Your Monitoring Schedule

While every patient is unique, doctors follow a general consensus for monitoring stability. If your condition is stable, you can typically expect the following “surveillance” rhythm:

  • Pulmonary Function Tests (PFTs): These are usually repeated every 3 to 6 months. Doctors look specifically at your FVC and DLCO to ensure your lung capacity and oxygen transfer remain steady [2][3].
  • High-Resolution CT (HRCT) Scans: Unlike PFTs, scans are not always done every few months. In stable patients, an HRCT may only be performed once a year or even less frequently to minimize radiation exposure [3][4].
  • The “Trigger” Rule: Regardless of the schedule, a new scan or test is usually ordered immediately if you experience a “trigger,” such as a significant increase in shortness of breath, a new cough, or a drop in your baseline oxygen levels [5][6].

Managing “Scanxiety”

It is common to feel a surge of distress or anxiety in the days leading up to a scan and the days spent waiting for results—a phenomenon often called scanxiety [7][8]. This emotional burden is a real medical symptom that can impact your quality of life [9].

To mitigate scanxiety, consider these evidence-based strategies:

  • Clarify the Timeline: Ask your doctor exactly how and when you will receive results (e.g., via a patient portal or a phone call). Knowing when to expect news can reduce the “limbo” effect [9].
  • Present-Moment Awareness: Techniques like mindfulness or stress-management exercises can help ground you when your mind starts racing toward “worst-case scenarios” [10][11].
  • Support Systems: Engaging with a dedicated ILD counselor or using digital cognitive behavioral tools can provide a structured way to process the fear of progression [12][13].

Daily Living and Quality of Life

Maintaining your independence is a vital part of ILD survivorship. Focusing on non-drug interventions can significantly improve how you feel:

  • Pulmonary Rehabilitation: This is one of the most effective ways to manage the fatigue that often accompanies ILD [14]. It teaches you energy conservation—ways to perform daily tasks with less effort—while improving your overall exercise tolerance [15][16].
  • Vaccinations: Because a simple lung infection can trigger a dangerous “flare-up” (exacerbation), staying up to date on flu, pneumonia, and COVID-19 vaccinations is a critical safety measure [5].
  • Traveling with Oxygen: Having ILD doesn’t mean you can’t travel. If you use supplemental oxygen, you will need a Portable Oxygen Concentrator (POC) that is FAA-approved for flights [17]. Most airlines require a “medical manifest” or a doctor’s letter and a “fit to fly” test (an in-office test to see how your oxygen reacts to simulated altitude) before you board [17][18].

By staying proactive with your monitoring and using all the tools available—from rehab to mental health support—you can manage the challenges of ILD while focusing on the things that matter most to you.

Common questions in this guide

How often will I need PFTs and HRCT scans for stable ILD?
If your interstitial lung disease is stable, pulmonary function tests (PFTs) are typically repeated every 3 to 6 months. High-resolution CT (HRCT) scans are usually done once a year to limit radiation exposure.
What should I do if my ILD symptoms suddenly get worse?
If you experience trigger symptoms like a significant increase in shortness of breath, a new cough, or a drop in your baseline oxygen levels, contact your doctor immediately. They will likely order an unscheduled scan or test to check for a flare-up.
What is scanxiety and how can I manage it?
Scanxiety is the emotional distress or fear you feel leading up to a medical scan and while waiting for the results. You can manage it by asking your doctor exactly when to expect results, practicing mindfulness, or speaking with an ILD counselor.
Can I fly if I have interstitial lung disease and use oxygen?
Yes, but you must plan ahead. You will need an FAA-approved Portable Oxygen Concentrator (POC) and clearance from your doctor, which often involves a fit to fly test to see how your body handles simulated high altitudes.
Why is pulmonary rehabilitation important for ILD?
Pulmonary rehabilitation is one of the best ways to manage the fatigue associated with ILD. It improves your overall exercise tolerance and teaches you energy conservation techniques to make daily tasks easier.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Based on my current stability, what is the exact schedule for my repeat PFTs and HRCT scans?
  2. 2.What are the 'trigger' symptoms that should make me call you for an unscheduled scan or test?
  3. 3.How can I get my results faster to minimize the waiting period after a scan?
  4. 4.Am I up to date on all recommended vaccinations, including pneumonia, flu, and COVID-19?
  5. 5.Can you provide a formal 'fit to fly' assessment or a letter for the airline if I plan to travel with oxygen?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (18)
  1. 1

    Advances in the Diagnosis of Rheumatoid Arthritis-Associated Interstitial Lung Disease: Integrating Conventional Tools and Emerging Biomarkers.

    Bai J, Yu F, He X

    International journal of molecular sciences 2026; (27(3)) doi:10.3390/ijms27031165.

    PMID: 41683591
  2. 2

    Assessment of recent evidence for the management of patients with systemic sclerosis-associated interstitial lung disease: a systematic review.

    Hoffmann-Vold AM, Maher TM, Philpot EE, et al.

    ERJ open research 2021; (7(1)) doi:10.1183/23120541.00235-2020.

    PMID: 33644224
  3. 3

    Rheumatoid arthritis related interstitial lung disease.

    Manfredi A, Cassone G, Luppi F, et al.

    Expert review of clinical immunology 2021; (17(5)):485-497 doi:10.1080/1744666X.2021.1905524.

    PMID: 33779447
  4. 4

    Progressive pulmonary fibrosis: current perspectives in diagnostic imaging.

    Agarwal P, Schlett CL, Bamberg F, Frye BC

    BJR open 2025; (7(1)):tzaf018 doi:10.1093/bjro/tzaf018.

    PMID: 40799208
  5. 5

    Factors associated with mortality in rheumatoid arthritis-associated interstitial lung disease: a systematic review and meta-analysis.

    Qiu M, Jiang J, Nian X, et al.

    Respiratory research 2021; (22(1)):264 doi:10.1186/s12931-021-01856-z.

    PMID: 34635095
  6. 6

    Interstitial lung disease in primary Sjögren's syndrome.

    Roca F, Dominique S, Schmidt J, et al.

    Autoimmunity reviews 2017; (16(1)):48-54 doi:10.1016/j.autrev.2016.09.017.

    PMID: 27682894
  7. 7

    Scanxiety among Adults with Cancer: A Scoping Review to Guide Research and Interventions.

    Derry-Vick HM, Heathcote LC, Glesby N, et al.

    Cancers 2023; (15(5)) doi:10.3390/cancers15051381.

    PMID: 36900174
  8. 8

    Prevalence, severity, and modifiable predictors of scanxiety in patients undergoing routine oncologic imaging: a prospective longitudinal study.

    Shah MS, Memon JA, Malik U, et al.

    Clinical imaging 2025; (128()):110634 doi:10.1016/j.clinimag.2025.110634.

    PMID: 41077027
  9. 9

    Scanxiety and quality of life around follow-up imaging in patients with unruptured intracranial aneurysms: a prospective cohort study.

    Kamphuis MJ, van der Kamp LT, van Eijk RPA, et al.

    European radiology 2024; (34(9)):6018-6025 doi:10.1007/s00330-024-10602-0.

    PMID: 38311702
  10. 10

    "You Always Worry": Scan-Related Anxiety Among Patients With Metastatic Lung Cancer.

    Derry-Vick H, Prigerson HG, Hahne J, et al.

    Journal of the American College of Radiology : JACR 2025; (22(12)):1572-1577 doi:10.1016/j.jacr.2025.08.021.

    PMID: 41338711
  11. 11

    "Scanxiety" and a sense of control: the perspective of lung cancer survivors and their caregivers on follow-up - a qualitative study.

    Seibel K, Sauer B, Wagner B, Becker G

    BMC psychology 2023; (11(1)):119 doi:10.1186/s40359-023-01151-0.

    PMID: 37069692
  12. 12

    A digital therapy targeting anxiety in pulmonary fibrosis: A decentralized randomized controlled trial.

    Solomon JJ, Hallowell RW, Ganslandt C, et al.

    Respirology (Carlton, Vic.) 2025; (30(3)):253-261 doi:10.1111/resp.14859.

    PMID: 39627155
  13. 13

    Stress Management Program for Scanxiety in People With Advanced Lung Cancer: Intervention Adaptation and Stakeholder Feedback.

    Derry-Vick H, Khoudary A, Billini O, et al.

    Psycho-oncology 2025; (34(1)):e70048 doi:10.1002/pon.70048.

    PMID: 39804222
  14. 14

    Impact of Pulmonary Rehabilitation on Exercise Tolerance and Quality of Life in Patients With Idiopathic Pulmonary Fibrosis: A SYSTEMATIC REVIEW AND META-ANALYSIS.

    Gomes-Neto M, Silva CM, Ezequiel D, et al.

    Journal of cardiopulmonary rehabilitation and prevention 2018; (38(5)):273-278 doi:10.1097/HCR.0000000000000273.

    PMID: 29351129
  15. 15

    Clinical evidence for improving exercise tolerance and quality of life with pulmonary rehabilitation in patients with idiopathic pulmonary fibrosis: A systematic review and meta-analysis.

    Lei S, Li X, Xie Y, Li J

    Clinical rehabilitation 2022; (36(8)):999-1015 doi:10.1177/02692155221095481.

    PMID: 35481421
  16. 16

    Impact of novel antifibrotic therapy on patient outcomes in idiopathic pulmonary fibrosis: patient selection and perspectives.

    Graney BA, Lee JS

    Patient related outcome measures 2018; (9()):321-328 doi:10.2147/PROM.S144425.

    PMID: 30288134
  17. 17

    [Air travel and oxygen therapy for passengers with respiratory diseases].

    Sorichter S, Sorichter AM, Scholz T

    Laryngo- rhino- otologie 2026; (105(1)):47-62 doi:10.1055/a-2727-0843.

    PMID: 41500216
  18. 18

    Exertional Desaturation and Prescription of Ambulatory Oxygen Therapy in Interstitial Lung Disease.

    Khor YH, Goh NS, Glaspole I, et al.

    Respiratory care 2019; (64(3)):299-306 doi:10.4187/respcare.06334.

    PMID: 30377245

This page provides educational information about living with and monitoring Interstitial Lung Disease (ILD). Always consult your pulmonologist to determine the appropriate monitoring schedule and care plan for your specific condition.

Get notified when new evidence is published on Interstitial lung disease.

We monitor PubMed for new peer-reviewed studies on this topic and email a short summary when something meaningful changes.