Endocrinology · Adrenocortical Carcinoma

Surveillance and the Path Forward

At a Glance

After adrenocortical carcinoma treatment, regular CT or MRI scans are the main way to watch for recurrence. Hormone tests can add information for some patients, while adrenal recovery after mitotane and steroid tapering may take years and require close medical supervision.

After completing your initial treatment for Adrenocortical Carcinoma (ACC), you enter a phase called surveillance. Because ACC is a fast-moving cancer with a high risk of returning—often within the first two years—monitoring must be both frequent and detailed ^[1]^[2]. This period is about staying one step ahead of the disease while slowly reclaiming your health.

The Surveillance Approach

Standard surveillance involves a thorough schedule that may extend well beyond five years, as late recurrences can occur. Your doctors will use complementary tools to check for any signs of the cancer’s return:

Imaging (The “Eyes”): You will likely have regular CT or MRI scans of your chest, abdomen, and pelvis ^[3]. In the first few years, these scans usually occur every 3 to 6 months, and schedules vary by your stage, grade, and overall risk ^[3].
Hormonal Profiling: In selected patients—particularly if your original tumor produced hormones or “precursor” building blocks—chemical markers can sometimes rise in your blood or urine before a tumor is large enough to be seen on a scan ^[4]^[5].

When available, advanced techniques like LC-MS/MS (liquid chromatography-tandem mass spectrometry) allow doctors to create a “steroid fingerprint” of your health, tracking markers like 11-deoxycortisol or testosterone ^[4]^[6]. However, this specialized testing is not uniformly available or established as routine everywhere, and normal hormone markers never replace the need for scheduled imaging.

Life After Mitotane: The Long Road to Recovery

If you have finished your course of mitotane, you may be eager to stop taking steroid replacements. However, adrenal recovery is a slow, variable process and cannot be rushed.

Mitotane lingers in your body fat for a long time, and its effects on your adrenal glands and liver enzymes can persist ^[7]^[8]. Studies estimating recovery show that while a majority of patients (approx. 57–78% in certain cohorts) eventually recover adequate adrenal function, it takes an average of 2.5 to 2.7 years to do so, and some patients may require steroids for life ^[9]^[10].

Never stop or reduce your steroid dose on your own. Your endocrinologist will use supervised tests, such as a morning cortisol test or a “stimulation test,” to prove your adrenal glands are working before starting a very slow, medically guided taper ^[8]^[10].

Managing the Psychological Toll

The “waiting game” of surveillance can be exhausting. Many survivors experience scanxiety—the intense anxiety that builds in the days and weeks leading up to a follow-up scan ^[11].

Validating the Stress: It is normal to feel a high “fear of recurrence” with a rare cancer diagnosis ^[11]^[12]. In surveys of cancer survivors, a vast majority report significant fear that their cancer will return ^[12].
Finding Support: Because ACC is rare, you may feel like those around you don’t fully understand the stakes. Seeking out support groups for rare cancers or working with a therapist who uses Cognitive Behavioral Therapy (CBT) or Acceptance and Commitment Therapy (ACT) can provide you with tools to manage uncertainty ^[13]^[14].
Active Coping: Focus on what you can control: your nutrition, your physical activity, and your partnership with your medical team. These actions don’t just help your body recover; they help your mind feel more empowered during a time of uncertainty ^[15].

Common questions in this guide

How often are scans needed after treatment for ACC?

During the first few years after ACC treatment, CT or MRI scans of the chest, abdomen, and pelvis are often scheduled every 3 to 6 months. The exact schedule depends on the cancer stage, tumor grade, and overall risk, and follow-up may continue beyond five years.

Can hormone tests replace scans during ACC surveillance?

No. Blood or urine hormone and steroid-precursor tests may help detect recurrence in selected people, especially when the original tumor produced hormones, but normal results do not replace scheduled imaging. The availability and use of advanced steroid profiling vary.

How long does adrenal recovery take after mitotane?

Adrenal recovery after mitotane is slow and varies from person to person. In some reported groups, about 57% to 78% of patients eventually regained adequate adrenal function, often after about 2.5 to 2.7 years, while some needed steroid replacement for life.

When can I safely taper steroid replacement after mitotane?

Do not stop or lower steroids on your own. An endocrinologist should confirm adrenal function with tests such as a morning cortisol or stimulation test, then supervise a very gradual taper if recovery is adequate.

What can help with scanxiety during ACC follow-up?

Scanxiety, or anxiety before follow-up scans, is common after cancer treatment. Rare-cancer support groups and therapy approaches such as cognitive behavioral therapy or acceptance and commitment therapy can help, along with discussing distress with your care team.

How long should follow-up continue after ACC treatment?

ACC surveillance may continue well beyond five years because late recurrences can occur. Your doctors should individualize the long-term plan based on factors such as stage, tumor grade, and recurrence risk.

Get notified when new evidence is published on adrenal carcinoma.

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

References (15)

1
Curative Resection of Adrenocortical Carcinoma: Rates and Patterns of Postoperative Recurrence.
Amini N, Margonis GA, Kim Y, et al.
Annals of surgical oncology 2016; (23(1)):126-33 doi:10.1245/s10434-015-4810-y.
PMID: 26282907
2
Longitudinal patterns of recurrence in patients with adrenocortical carcinoma.
Glenn JA, Else T, Hughes DT, et al.
Surgery 2019; (165(1)):186-195 doi:10.1016/j.surg.2018.04.068.
PMID: 30343951
3
European Society of Endocrinology Clinical Practice Guidelines on the management of adrenocortical carcinoma in adults, in collaboration with the European Network for the Study of Adrenal Tumors
Fassnacht M, Dekkers OM, Else T, et al.
European journal of endocrinology 2018; (179(4)):G1-G46 doi:10.1530/EJE-18-0608.
PMID: 30299884
4
Early Detection of Recurrence and Progress Using Serum Steroid Profiling by LC-MS/MS in Patients with Adrenocortical Carcinoma.
Kimpel O, Altieri B, Dischinger U, et al.
Metabolites 2023; (14(1)) doi:10.3390/metabo14010020.
PMID: 38248823
5
Urine Steroid Metabolomics as a Novel Tool for Detection of Recurrent Adrenocortical Carcinoma.
Chortis V, Bancos I, Nijman T, et al.
The Journal of clinical endocrinology and metabolism 2020; (105(3)) doi:10.1210/clinem/dgz141.
PMID: 31665449
6
Simplified urinary steroid profiling by LC-MS as diagnostic tool for malignancy in adrenocortical tumors.
Vogg N, Müller T, Floren A, et al.
Clinica chimica acta; international journal of clinical chemistry 2023; (543()):117301 doi:10.1016/j.cca.2023.117301.
PMID: 36948238
7
Patient Experience of Adrenocortical Carcinoma: Views from a Patient, His Physician and a Patient Association.
Büdenbender M, Heitz-Lamy C, Fassnacht M
Advances in therapy 2026; doi:10.1007/s12325-026-03718-w.
PMID: 42631797
8
Effects of mitotane on the hypothalamic-pituitary-adrenal axis in patients with adrenocortical carcinoma.
Reimondo G, Puglisi S, Zaggia B, et al.
European journal of endocrinology 2017; (177(4)):361-367 doi:10.1530/EJE-17-0452.
PMID: 28780517
9
Recovery of adrenal function after stopping mitotane in patients with adrenocortical carcinoma.
Altieri B, Kimpel O, Megerle F, et al.
European journal of endocrinology 2024; (190(2)):139-150 doi:10.1093/ejendo/lvae007.
PMID: 38244214
10
Recovery of Adrenal Insufficiency Is Frequent After Adjuvant Mitotane Therapy in Patients with Adrenocortical Carcinoma.
Poirier J, Gagnon N, Terzolo M, et al.
Cancers 2020; (12(3)) doi:10.3390/cancers12030639.
PMID: 32164326
11
Scanxiety and Fear of Recurrence in Young Adult Female Breast and Gynaecological Cancer Survivors: Investigating Shared Mechanisms.
Patel DS, Webster SN, Dowling EJ, et al.
Psycho-oncology 2024; (33(12)):e70050 doi:10.1002/pon.70050.
PMID: 39694862
12
Prevalence and correlates of fear of recurrence among adolescent and young adult versus older adult post-treatment cancer survivors.
Shay LA, Carpentier MY, Vernon SW
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 2016; (24(11)):4689-96 doi:10.1007/s00520-016-3317-9.
PMID: 27387913
13
The effect of psychological interventions on fear of cancer recurrence in breast cancer survivors: A systematic review and meta-analysis.
Lyu MM, Siah RC, Lam ASL, Cheng KKF
Journal of advanced nursing 2022; (78(10)):3069-3082 doi:10.1111/jan.15321.
PMID: 35696315
14
Comparative Efficacy of Psychosocial Interventions on Fear of Cancer Recurrence: A Network Meta-Analysis.
Qian J, Sun S, Wang M, Xue Q
Cancer nursing 2026; doi:10.1097/NCC.0000000000001565.
PMID: 41812049
15
The prevalence, severity, and correlates of psychological distress and impaired health-related quality of life following treatment for testicular cancer: a survivorship study.
Smith AB, Butow P, Olver I, et al.
Journal of cancer survivorship : research and practice 2016; (10(2)):223-33 doi:10.1007/s11764-015-0468-5.
PMID: 26178326

This page explains follow-up, adrenal recovery, and emotional support after ACC treatment for informational purposes only and does not replace medical advice. Never change your steroid dose without guidance from your healthcare team.

Guide Contents