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Adrenal Cancer Screening: Who Needs It and Who Does Not

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HealthTree

Last updated and reviewed on: September 23, 2026

There is no adrenal cancer screening test for the general public, and no major guideline group recommends one. That is the short answer, and it is worth knowing before you read any further, because a lot of what appears online blurs three very different things together.

What does exist, and what matters to the families it applies to, is surveillance: a planned schedule of exams, blood tests, and scans for people who carry a gene change that raises their risk.

This guide is centered on adrenocortical carcinoma, or ACC (cancer of the adrenal cortex, the outer layer of the adrenal gland). It affects women and men, and it also affects young children, so parts of this guide are written for parents. Your own care team is the right place to settle any of these decisions.

What Is Adrenal Cancer Screening?

Three words are used as if they mean the same thing, and they do not. Getting them straight will save you a lot of confusion.

Screening means testing people who feel completely well and have no known reason to be at extra risk, in the hope of catching a disease early. Mammograms for breast cancer and colonoscopy for colorectal cancer are screening.
Diagnosis means testing a person who already has a symptom, a sign, or an abnormal finding, in order to find out what is causing it. Hormone tests in someone whose voice is deepening are diagnosis, not screening.
Surveillance means a planned, repeating schedule of tests in a person who is known to be at higher risk, either because they carry a gene change or because something has already been found that needs watching. Adrenal cancer has no screening. It has diagnosis, and it has surveillance.

There is no population screening for adrenal cancer, and no major guideline group recommends screening people at average risk. The American Cancer Society, which publishes formal early detection recommendations for several cancers, states that because adrenal cancers occur so rarely, it does not recommend routine testing for this cancer in people without any symptoms. The National Cancer Institute's own listing is even starker: it says plainly that it does not have evidence-based information about screening for adrenocortical carcinoma, because the evidence to build a recommendation from does not exist.

Rarity is not just an inconvenience here. It is what makes population screening actively harmful rather than merely impractical. The National Cancer Institute puts adrenocortical carcinoma at about 2 cases per 1 million people per year. Imagine scanning a million adults who feel fine. You would expect to turn up roughly 2 adrenal cancers. In the same million scans, you would find a far larger number of adrenal lumps that are not cancer at all. Benign adrenal masses found by accident are common enough that they have their own name, the adrenal incidentaloma, and their own international guideline. The 2023 European Society of Endocrinology guideline notes that in most cases these are nonfunctioning adrenocortical adenomas, meaning harmless growths that make no extra hormone.

So a screening program would deliver a flood of false alarms for every real cancer found. Each one means more scans, worry that lasts months, sometimes a needless operation, and radiation from imaging. The National Cancer Institute has already reached this conclusion about a very similar idea, whole-body CT scanning of healthy people: it states that whole-body CT has not been shown to be an effective screening method for healthy people, that most abnormal findings do not indicate a serious health problem, and that most doctors recommend against it for people without signs or symptoms of disease. Screening only helps when the disease is common enough that the true findings outweigh the false ones. Adrenal cancer is nowhere near that threshold.

Targeted surveillance is a completely different calculation, and here the news is genuinely good. Certain inherited syndromes raise adrenal cancer risk enough to change the math. In children with adrenocortical carcinoma, predisposing genetic factors have been found in more than half of cases in North America and Europe. The National Cancer Institute describes a Brazilian program that screened more than 171,000 newborns for a common local TP53 gene change, found 461 carriers, and offered clinical monitoring: adrenal tumors found in the monitored children were smaller and more curable than those found in carriers whose families did not take part. That is what surveillance is for. It does not stop cancer from happening. It changes when it is found, which changes what can be done about it.

Types of Adrenal Cancer Screening and Surveillance Tests

Here is what the tests actually involve, physically, so nothing is a surprise. None of these is used to screen the general public. They are used in surveillance for people with a hereditary syndrome, in following a known adrenal mass, and in diagnosis when something needs explaining.

Germline genetic testing: This is the gateway that decides whether anything else on this list applies to you. Germline means the genes you were born with, as opposed to changes that happen only inside a tumor. It is done on a small sample of blood or saliva, and results usually take about 2 to 3 weeks. Genetic counseling is generally recommended before testing so you understand what a positive, negative, or uncertain result would mean. Without this step, there is no way to know whether you belong in a surveillance program at all.
Clinical examination and blood pressure checks: The least glamorous test on the list and one of the most useful. A clinician looks and feels for the specific footprints of adrenal hormone excess: weight gain in the face and belly, thin or easily bruised skin, purple stretch marks, new or heavier body hair, a deepening voice, breast growth in men, and in a child, early puberty or unusually fast growth. Blood pressure is measured because both cortisol and aldosterone excess push it up. In the published Li-Fraumeni surveillance protocol, this exam is explicitly written to include blood pressure, a full neurologic exam, and assessment of growth, sudden weight change, cushingoid appearance, or signs of virilization in a child.
Hormone blood and urine testing: A blood draw, or a urine collection carried out over a full 24 hours at home into a container from the lab. For adrenal cortex hormones, this can include cortisol, aldosterone with renin, and androgens such as total testosterone, DHEA sulfate, and androstenedione. A common cortisol test is the 1 mg overnight dexamethasone suppression test, where you take a tablet late at night and have blood drawn the next morning. The Li-Fraumeni protocol uses serum total testosterone, DHEA sulfate, and androstenedione specifically when an abdominal ultrasound is unsatisfactory.
Abdominal ultrasound: A gel is spread on the belly, and a handheld probe is moved over the skin. There is no radiation, no needle, and no sedation. It takes about 15 to 30 minutes. This is the workhorse of childhood surveillance precisely because it is harmless and repeatable. In Li-Fraumeni syndrome, ultrasound of the abdomen and pelvis is the specific test used to look for adrenocortical carcinoma in children.
Whole body MRI: You lie still inside a tube-shaped scanner for roughly 45 to 60 minutes while it takes images from head to lower legs. It is loud, and you are given ear protection. There is no radiation. It is used without contrast dye in the Li-Fraumeni protocol. Its strength is catching many different tumor types in a population at risk for many different cancers. Its published drawbacks are cost, limited access, a high false positive rate especially on the very first scan, and the need for sedation in young children.
CT and MRI for following a known adrenal mass: These are the tests used when a mass has already been found, and the question is whether it is growing or changing. A CT of the adrenal glands takes minutes and uses X-rays. The key measurement is Hounsfield units, a density number: the 2023 European guideline states that a homogeneous adrenal mass at 10 Hounsfield units or less on a noncontrast CT is benign and needs no further imaging, whatever its size. MRI can be used instead, and the guideline suggests MRI rather than CT in children, adolescents, and pregnant women when dedicated adrenal imaging is needed.
Alpha fetoprotein blood test: A single blood draw. Alpha fetoprotein, usually shortened to AFP, is a protein that can rise with certain childhood tumors. In Beckwith-Wiedemann surveillance, it is used mainly to watch for hepatoblastoma, a liver tumor, alongside the ultrasound that also covers the adrenal glands. AFP is naturally high in babies in the first year of life, so results are read as a trend over time rather than as a single number.
Plasma metanephrines or urine fractionated metanephrines: A blood draw, often done lying down after a rest period, or a 24-hour urine collection. These measure the breakdown products of adrenaline type hormones and are the standard tests for pheochromocytoma and paraganglioma. They are also part of the workup of any adrenal mass that does not look clearly benign, because a pheochromocytoma has to be excluded before anyone operates or biopsies.

Pheochromocytoma Surveillance Is a Separate Track

Pheochromocytoma and paraganglioma, together called PPGL, arise from the adrenal medulla (the inner core) rather than the cortex, and they are watched for differently. The genes involved include SDHA, SDHB, SDHC, SDHD, SDHAF2, MAX, and TMEM127, along with VHL, RET, and NF1. The published surveillance approach in GeneReviews for hereditary paraganglioma and pheochromocytoma syndromes is annual clinical assessment, biochemical testing with plasma free fractionated metanephrines or 24-hour urine fractionated metanephrines every 2 years in childhood and then annually in adults, and whole-body MRI every 2 to 3 years. GeneReviews is careful to say that clear data on when to start, which method is best, and how often to test do not exist, and that gene-specific recommendations from expert groups are based on limited data. The National Cancer Institute states that people with an inherited form of pheochromocytoma or paraganglioma need lifelong follow-up.

When Should You Start Screening for Adrenal Cancer?

For the general population, there is no start age, because there is nothing to start. No guideline group sets an age at which average-risk adults should begin adrenal cancer screening, and none recommends beginning at all. If you have no family history and no known syndrome, the honest answer to "when should I start" is that you should not, and that testing you when nothing is wrong is more likely to hurt you than help you.

Surveillance is a different story, and for several syndromes it begins in infancy. In Li-Fraumeni syndrome, caused in most families by an inherited change in the TP53 gene, the surveillance schedule published in GeneReviews and adapted from the Toronto protocol starts at birth. It includes a comprehensive physical exam every 3 to 4 months from birth to age 18 and every 6 months from age 18 onward. It includes whole-body MRI annually at all ages. For adrenocortical carcinoma specifically, it includes ultrasound of the abdomen and pelvis every 3 to 4 months from birth to age 18, deliberately scheduled on a different visit from the whole-body MRI, with serum total testosterone, DHEA sulfate, and androstenedione measured if the ultrasound is unsatisfactory. From age 18 onward, the abdominal and pelvic ultrasound continues annually. Li-Fraumeni syndrome is thought to occur in about 1 in 5,000 to 1 in 20,000 people worldwide.

In Beckwith-Wiedemann syndrome, an overgrowth condition affecting about 1 in 10,500 to 13,700 newborns, the North American surveillance protocol published in GeneReviews also starts in early childhood. It includes abdominal ultrasound with views of the liver, adrenal glands, and kidneys every 3 months until age 4, which covers hepatoblastoma and Wilms tumor first but also adrenocortical carcinoma and abdominal neuroblastoma. From age 4 to age 7, it switches to renal ultrasound only, still every 3 months, to watch for Wilms tumor. It includes a serum AFP level every 3 months until age 4, and a physical exam by a pediatrician, geneticist, or pediatric oncologist twice a year, partly to keep teaching families what signs to watch for. Tumors develop in about 10% of people with Beckwith-Wiedemann syndrome and almost always appear in childhood.

Two important caveats, and they are the reason you should not run your child's care off a web page, including this one. First, protocols vary between centers and between countries. GeneReviews notes that in North America proactive tumor screening is commonly recommended when tumor risk exceeds 1%, while in many European countries the threshold used is 5%, which produces genuinely different schedules for the same child. It also notes that other published Li-Fraumeni guidelines, including those from the American Association for Cancer Research and from the United Kingdom's National Institute for Health and Care Excellence, differ slightly from the schedule above, because definitive data on how well each strategy works do not exist. Second, these protocols have changed over time and will change again. Get a written plan from your own genetics or endocrinology team, with the specific tests, the specific intervals, and who is responsible for ordering each one. Then ask when it will next be reviewed.

The starting point for surveillance is also shaped by family history rather than by the calendar alone. The GeneReviews Li-Fraumeni table notes that people with a family history of the syndrome should begin surveillance at the listed ages or 5 to 10 years before the age at which cancer appeared in their family, whichever comes first. And because cancer risk in Li-Fraumeni syndrome is raised even in infancy, TP53 testing is offered at birth through cord blood or soon afterward, with a discussion for families who are not ready to test a very young child. For pheochromocytoma predisposition genes, the published starting ages sit in early childhood too, generally somewhere between ages 6 and 15 depending on the gene, with age 6 to 10 cited for SDHB, and GeneReviews explicitly says the wide ranges exist because multiple consensus guidelines disagree and a patient-centered approach is needed to pick the actual age.

Follow-up of an adrenal incidentaloma runs on a separate clock and is worth treating as its own topic, because it is surveillance and not screening. Under the 2023 European Society of Endocrinology guideline, a mass with clear benign features on imaging needs no further imaging follow-up at all. If a mass is indeterminate and the person opts not to have surgery, the guideline suggests one repeat noncontrast CT or MRI after 6 to 12 months to check for growth, with surgical removal suggested if it enlarges by more than 20% in maximum diameter plus at least a 5 mm increase; growth below that threshold may prompt another scan after a further 6 to 12 months. Repeat hormone testing is recommended if the first hormone workup was normal, unless new signs appear or conditions such as high blood pressure or type 2 diabetes get worse. Separately, after surgery for adrenocortical carcinoma, the European guideline suggests imaging every 3 months for 2 years, then every 3 to 6 months for a further 3 years, with most of the panel favoring continued follow-up beyond 5 years in an adapted form. Our guide to adrenal cancer stages explains why that timing is front-loaded.

Which Screening Tests Should I Choose?

This is not a menu you order from. It is a plan built with a genetic counselor and an endocrinologist, and that is a feature rather than a limitation. The tests only make sense as a package, chosen for a specific gene, a specific age, and a specific family history. Ordering an abdominal ultrasound for yourself because you read about a specific protocol will not tell you anything useful if you do not know whether you carry a TP53 change. The right first question is not "which test" but "does any of this apply to me?"

Getting to genetic counseling is more straightforward than people expect. You can ask your primary care clinician or your oncologist for a referral to cancer genetic counseling, and it is reasonable to say why: a relative with cancer at a young age, several different cancers in one person, a child in the family with cancer, or a rare cancer such as adrenocortical carcinoma. The European guideline for adrenocortical carcinoma recommends that all adults with the diagnosis have at least a basic clinical genetic evaluation exploring personal and family history for signs of a hereditary predisposition syndrome. The appointment itself is mostly conversation. The counselor builds a family tree, estimates how likely an inherited cause is, explains which test would fit, and walks through what a positive, negative, or uncertain result would mean for you and for your relatives, including the emotional side. Health insurance typically covers counseling and testing considered medically necessary, and subsidized programs exist for uninsured people. Where possible, testing starts with the family member who has had cancer.

If a clinician brushes off a hormone symptom that has not gone away, you have specific, reasonable things to ask for rather than an argument to win. Ask directly for a referral to endocrinology, the hormone specialty. Ask for hormone testing to rule out an adrenal cause, and it is fine to name what you are asking about: cortisol, aldosterone with renin, androgens, and metanephrines. Ask for the reason for any refusal to be written in your notes, which is not a threat but a normal way to make a decision visible. Bring photographs if your appearance has changed over months, because a clinician seeing you once cannot see the change you are describing. Focus on speed of change, since body hair, voice, periods, blood pressure, weight, and blood sugar that shift over months rather than years are what should trigger a hormone workup. The European guideline recommends urgent assessment of an adrenal mass in pregnant women and in anyone younger than 40, because malignancy and significant hormone excess are more likely in those groups. Our guide to adrenal cancer symptoms can help you describe what you are noticing.

Finding a high-volume academic adrenal center with specialists is worth real effort, because expertise is not evenly spread for a disease this rare. The European guideline recommends that all patients with suspected and proven adrenocortical carcinoma be discussed in a multidisciplinary expert team that includes endocrinology, oncology, pathology, radiology, and surgery, with access to genetics as well. It also recommends that adrenal surgery for suspected or confirmed adrenal cancer be performed only by surgeons experienced in adrenal and oncological surgery, and it says that tumors extending into large blood vessels should not be called unresectable until reviewed at an expert center. Practical ways in: search the NCI-designated cancer center list for a center near you, then ask that center's endocrine oncology or endocrine surgery program two blunt questions, which are how many adrenalectomies the surgeon does each year and whether there is an adrenal tumor board. Asking for a second opinion before surgery is normal and does not offend anyone worth seeing. Our guide to joining a clinical trial for adrenal cancer covers another reason these centers matter.

Radiation from repeated CT scans is a fair thing to raise, especially for a child or young adult in long-term surveillance, and the answer is not to refuse imaging but to ask good questions. Children are more sensitive to radiation than adults because their cells are dividing faster and they have more years ahead in which a late effect could appear. In a large multinational study, in the 12 years after a single CT scan, the added risk of cancer was about 1 to 2 cases for every 10,000 scans performed on children and young people, which is small but not zero when scans repeat for decades. The National Cancer Institute suggests three questions parents can ask:

Why is the test needed? Will the results change treatment decisions?
Is there an alternative test that does not involve radiation? For adrenal surveillance, there often is an alternative, which is why ultrasound and MRI carry so much of the load in childhood protocols, and why the European guideline suggests MRI rather than CT in children, adolescents, and pregnant women.
Does the center use pediatric dose settings, and consider keeping your own running list of every scan?

Reducing Your Risk of a Late Adrenal Cancer Diagnosis

Because there is no screening test to lean on, the timing of an adrenal cancer diagnosis usually depends on how quickly somebody takes an unexplained change seriously.

Write things down as they happen. A short dated note when your blood pressure jumped, when your periods became irregular, when your face changed shape, when the acne started, when the fatigue got hard to explain, turns a vague story into a timeline. Photographs on your phone do the same work even better. Clinicians respond to sequence and speed, and a timeline shows both. This also protects you across appointments, because the person you see in March may not be the person you saw in November.

Insist that a cluster gets looked at as a cluster. Any one of these findings has a dozen ordinary explanations. High blood pressure with low potassium is one pattern. New body hair with irregular periods and a deepening voice is another. Weight gain in the face and belly with easy bruising and new high blood sugar is a third. Each of those combinations is a recognized adrenal hormone pattern, and the European guideline recommends a detailed hormonal workup covering cortisol, sex hormones, mineralocorticoids, and hormone precursors, with pheochromocytoma also excluded, in anyone with a suspected adrenal cancer. Symptoms treated one at a time by different clinicians can hide a pattern that is obvious when written on a single page.

Do not let an adrenal mass drift. If a scan for something unrelated found something on your adrenal gland, ask three questions before you leave:

Is this mass clearly benign on imaging?
Has the hormone workup been done?
Exactly what is the next step and when?

Under the 2023 European guideline, a clearly benign mass needs no further imaging, but an indeterminate one has a defined follow-up interval, and every incidentaloma should have hormone testing including a 1 mg overnight dexamethasone suppression test and metanephrine measurement. Ask for the plan in writing and put the date in your calendar yourself. Follow-up that depends on someone else remembering is the most common way a small problem becomes a large one.

Close the genetics loop rather than leaving it open.

If you have already had genetic testing, find out whether an uncertain result has since been reclassified, since variants of uncertain significance are reviewed as knowledge grows and the lab may have new information.
If your testing was years ago, ask whether newer panels cover genes that were not tested then.
If a syndrome was found in your family, make sure the relatives who need to know actually know, and ask your genetic counselor for a family letter they can hand to their own clinicians. A single conversation can put a niece or a nephew onto a surveillance schedule that starts in infancy.

Finally, be a patient who is hard to lose track of.

Keep one current list of your medicines and supplements
Keep a list of your scans with dates, and the name of one clinician who is coordinating everything
Ask for copies of your imaging reports and pathology reports
If you are told to come back in 6 months, book it before you leave

None of this prevents adrenal cancer; it simply makes late diagnosis less likely, which is the goal. Talk with your own care team about what belongs on your plan, and our guides to adrenal cancer facts and adrenal cancer support can help with the rest.

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