Adrenal Cancer (Adrenocortical Carcinoma): Symptoms, Stages and Treatment

Last reviewed: 13 November 2026. The numbers below are linked to their sources at the end of this page.

A Scan Found Something on Your Adrenal Gland. Is It Cancer?

A lot of people first hear the word "adrenal" when a CT scan, done for something else entirely, mentions a lump on one of these glands. It's a worrying line to read in a report. But it helps to know how common these lumps are: the American Cancer Society says adrenal tumours turn up in up to 1 in every 10 people who have a scan of the area, and most of them are harmless growths called adenomas.

Adrenocortical carcinoma is the rare exception. Because it is so uncommon, the road to a clear diagnosis can feel slow and confusing, with one test leading to the next.

If you or someone in your family is at that stage, this guide is meant to help you follow the conversation with your doctors. It covers what the adrenal cortex does, how to read the key lines in a CT report, the symptoms that hormone-making tumours cause, how treatment is decided, what mitotane is like to live with day to day, and which newer medicines are being studied. Where a medicine isn't easy to get locally, we also explain how the named patient import route works for patients in India.

Adrenal Cancer at a Glance: Key Facts

What the Adrenal Cortex Actually Does

You have two adrenal glands, one sitting on top of each kidney. Each one has two parts. The inner part, the medulla, makes adrenaline and other stress hormones. The outer part, the cortex, is where this cancer begins. (A tumour of the medulla is a different disease called pheochromocytoma, which isn't covered here.)

According to the National Cancer Institute, the cortex makes hormones that:

• balance the water and salt in your body
• help keep your blood pressure normal
• help control how your body uses protein, fat and carbohydrates
• shape male and female body features

That list explains almost every symptom of this cancer. When a tumour grows in the cortex, it can start pouring out one or more of these hormones without the body's usual brakes.

"Functioning" and "non-functioning" tumours

Doctors sort these tumours into two groups. A functioning tumour makes more hormone than normal. A non-functioning tumour doesn't, so it tends to stay silent until it is big enough to press on things around it. NCI notes that most adrenocortical tumours are functioning, and its specialist summary says hormone testing shows up to 80% of them make extra hormones. If you'd like a plainer background on how cancer starts and spreads in general, our earlier guide covers that.

How Rare Is It? What the Numbers Say

In the United States

• About 2 cases per 1 million people a year (NCI, specialist PDQ summary)
• 300 to 400 new cases diagnosed each year in the US (American Cancer Society)
• Median age at diagnosis: 46 years (NCI)
• Two age peaks: children under 5 and adults in their 40s and 50s (ACS)
• Women are more likely to get it, and more likely to have a hormone-making tumour (ACS)

What Indian hospitals have reported

We couldn't find a national count of adrenocortical carcinoma for India. The clearest picture comes from hospital series, and two of them are worth knowing:

• Regional Cancer Centre, Thiruvananthapuram (2006 to 2015): 37 patients, median age 49. Extra hormone production in 27%. Median tumour size 10 cm. 17 of 37 already had spread at diagnosis. Overall survival at 5 years was 21%.
• SGPGI, Lucknow (1990 to 2011): 45 patients, 16 of them children. Hormone-making tumours were far more common in children (87.5%) than in adults (31%).

Both reports describe large tumours and a lot of late diagnosis. That fits the NCI's note that, historically, only about 30% of these cancers are still confined to the adrenal gland when they are found.

5-year relative survival for adult adrenocortical carcinoma, by how far it had spread (SEER, 2015 to 2021)

These figures come from people diagnosed several years ago. They describe groups, not any one person, and they can't account for your age, your general health or how the cancer responds to treatment. Still, the gap between the first bar and the third one says something important: finding this cancer while it is still inside the gland changes the outlook a great deal.

Symptoms: Often the Hormones Speak First

The American Cancer Society says that in about half of people with adrenal cancer, the symptoms come from hormones made by the tumour. Which symptoms you notice depends on which hormone is in excess.

Too much cortisol (Cushing syndrome)

• weight gain in the face, neck and belly, with thin arms and legs
• a round, red, full face and a fatty lump at the back of the neck
• purple stretch marks on the abdomen and easy bruising
• weak muscles, especially in the legs
• high blood sugar and high blood pressure
• low mood or mood swings, and weaker bones

Too much aldosterone

• high blood pressure
• low potassium, which can cause weakness and muscle cramps
• passing urine often and feeling thirsty

Too much male or female sex hormone

In women

• new hair on the face, chest or back, acne, hair thinning on the scalp, a deeper voice
• periods that stop or become irregular, or bleeding after menopause

In men

• breast tissue growth, lower sex drive and erection problems (from extra oestrogen)
• extra testosterone in men usually causes no obvious signs

In young children

• signs of early puberty, such as pubic or underarm hair, or genital or breast growth

Symptoms from the tumour's size

A non-functioning tumour can grow for a long time without any warning. When it does cause trouble, it's usually because it presses on nearby organs:

• pain in the belly or back
• a feeling of fullness, low appetite or feeling full quickly
• weight loss, fever or low energy
• sometimes a lump that can be felt in the abdomen

Around 1 in 5 adrenal cancers are found before any symptoms appear, usually on a scan done for some other reason. None of the signs above prove cancer on their own. Many have common, harmless causes, so the right next step is a proper check-up rather than worry.

Why Some People Get It

For most people, nobody can say why it happened. The American Cancer Society says the exact cause of most adrenal cancers isn't known. What is known is that a few inherited conditions raise the risk:

• Li-Fraumeni syndrome (a change in the TP53 gene): behind more than half of adrenocortical carcinomas in children, and about 1 in 20 in adults
• Beckwith-Wiedemann syndrome, which also raises the risk of some childhood kidney and liver cancers
• Carney complex
• Multiple endocrine neoplasia type 1 (MEN1): about a third to a half of adults with MEN1 develop adrenal tumours, a few of which can be cancer
• Familial adenomatous polyposis (FAP)

If a child is diagnosed, or if several relatives have had cancers at a young age, it's worth asking your doctor about genetic counselling, because an inherited gene change can matter for brothers, sisters and children too.

Getting a Diagnosis: Tests and Stages

Hormone tests come first

Before anyone operates, doctors want to know whether the tumour is making hormones. Those levels later act as a marker to track treatment. Common tests include:

• a 24-hour urine collection to measure cortisol or 17-ketosteroids
• a dexamethasone suppression test, which checks whether cortisol production can be switched off as it normally should
• blood tests for potassium, sodium and adrenal hormones

Scans

• CT of the abdomen and chest, which NCI says is needed for proper staging
• MRI, which helps tell harmless masses from cancer and shows whether nearby blood vessels are involved
• PET-CT in some patients, to look for spread

Often the diagnosis is confirmed only when a pathologist looks at the removed gland, or part of it, under a microscope.

Reading your CT report: when an adrenal lump is likely harmless

Most adrenal lumps are found by chance, so this is often the first real question. The European Society of Endocrinology's 2023 guideline on these "incidentalomas" gives doctors two useful markers from a plain (unenhanced) CT scan:

• Density in Hounsfield units (HU). A lump that looks even all the way through (homogeneous) and measures 10 HU or less is benign, whatever its size, and needs no more scans.
• Size and texture. Lumps bigger than 4 cm that look uneven, or measure more than 20 HU, carry enough risk of cancer that surgery is usually advised.

Anything in between is meant to be discussed by a team of specialists. The same guideline says every adrenal lump also needs hormone tests, including a 1 mg overnight dexamethasone test and plasma or urine metanephrines, even if you feel well. If your report mentions HU or size and nobody has explained it, ask. It's a fair question and it changes what happens next.

The four stages

Doctors use the AJCC or the very similar ENSAT system. In simple terms:

Choosing the Right Team Matters More Than Usual

Because adrenal cancer is so rare, few hospitals see many cases. The European Society of Endocrinology's 2018 guideline for adults with ACC makes a few recommendations that are worth knowing as a patient:

• every suspected or confirmed case should be discussed by a multidisciplinary expert team (surgeon, endocrinologist, oncologist, radiologist and pathologist together)
• surgery should be done only by surgeons experienced in adrenal and cancer surgery, aiming to remove the tumour completely in one piece
• the tissue should be reviewed by an expert adrenal pathologist, who reports the Weiss score and the Ki-67 index

Before the operation, it's reasonable to ask the surgeon how many adrenal cancer operations they do, and whether your case has been reviewed by a tumour board. The National Cancer Institute calls complete surgical removal the only way to achieve long-term disease-free survival, which is why that first operation matters so much.

Treatment Turns on One Question: Can It All Be Removed?

Stages I and II

Surgery is the main treatment. The whole adrenal gland with the tumour is removed, and any enlarged lymph nodes nearby are taken out too. Because you have two adrenal glands, losing one doesn't usually cause problems. For many people, no further treatment is needed after a complete operation.

Stage III

Surgery is still the main treatment, but it's bigger. The surgeon may need to remove part of the kidney or liver along with the gland, plus the nearby lymph nodes. Radiation or medicine may be given afterwards to lower the chance of the cancer returning.

Is mitotane needed after surgery?

This is one of the most debated questions in adrenal cancer, and it depends on risk. The 2018 European guideline suggests mitotane after surgery when the risk of the cancer coming back is high, which it defines as stage III, tumour left at the edges of what was removed (an R1 resection), or a Ki-67 above 10%. For lower-risk patients, the ADIUVO trial (published in 2023) compared two years of mitotane with careful follow-up alone after complete surgery. Among 91 patients, recurrence-free survival at 5 years was 79% with mitotane and 75% without it, a difference the trial could not show was real. The researchers concluded mitotane might not be needed for low-grade, localised ACC, while noting the trial stopped early because recruitment was slow.

So the decision is personal. Your team will look at things like the tumour's Ki-67 score (a measure of how fast cells are dividing), whether the tumour was removed with clear edges, and whether it broke open during surgery.

Stage IV, or cancer that can't be removed

Here the aim shifts to controlling the cancer, easing symptoms and protecting quality of life. Options include:

• Mitotane, alone or combined with chemotherapy
• EDP chemotherapy (etoposide, doxorubicin and cisplatin) plus mitotane. In the FIRM-ACT trial of 304 patients (New England Journal of Medicine, 2012), this combination shrank tumours in 23.2% of patients versus 9.2% with streptozocin plus mitotane, and kept the cancer in check for longer (5.0 versus 2.1 months). Overall survival was 14.8 versus 12.0 months, which was not a significant difference.
• Surgery to remove as much tumour as possible, or a single area of spread that is causing symptoms
• Radiation, for example to painful bone metastases, and other local treatments such as radiofrequency ablation or chemoembolization, which the European guideline says are particularly valuable when the cancer can't be fully removed
• Hormone-blocking medicines such as metyrapone or ketoconazole for high cortisol, or spironolactone for high aldosterone (though spironolactone shouldn't be combined with mitotane, as explained below)
• Clinical trials of immunotherapy or targeted drugs

The European guideline recommends either mitotane alone or mitotane with EDP for widespread disease, chosen according to how fast the cancer seems to be growing. If the cancer comes back after at least 12 months without disease, and it looks possible to remove or ablate all of it, surgery or another local treatment is recommended.

Newer medicines being studied

Mitotane is still the only medicine approved specifically for adrenocortical carcinoma. Two drugs already used for other cancers have been tested in small trials:

• Cabozantinib (a tablet that blocks several growth signals): in a single-centre phase 2 trial of 18 adults published in 2024, 72.2% had no cancer growth at 4 months and the median time before growth was 6 months.
• Pembrolizumab (an immunotherapy drip): in a phase 2 group of 16 patients reported in 2019, 2 of 14 who could be assessed had their tumours shrink, and 7 more had their disease hold steady for a while.

Neither is approved for adrenal cancer, and both trials were small. If your oncologist brings one of them up, or suggests a clinical trial, ask what the evidence looks like for your situation.

Where Lysodren (Mitotane) Fits

What it is

Lysodren is the brand name of mitotane, made by Esteve Pharmaceuticals. It's an adrenal cytotoxic drug: it acts directly on the adrenal cortex and changes the way the body handles steroid hormones. The US FDA first approved it in 1970, and its current US label covers inoperable adrenocortical carcinoma, whether or not the tumour makes hormones. In Europe it has been authorised since 2004 for treating the symptoms of advanced ACC that can't be removed, has spread or has come back.

The American Cancer Society calls mitotane the most commonly used medicine for this cancer. Even when it doesn't shrink a tumour, it can bring down excess hormone levels and ease symptoms. Pack, storage and access details for Lysodren in India are on its medicine page.

How it's taken

• 500 mg tablets, swallowed whole with food; never crushed, chewed or split
• Usual starting dose: 2,000 to 6,000 mg a day, split into three or four doses
• The dose is raised slowly until a blood test shows a mitotane level of 14 to 20 mg/L. Levels above 20 mg/L bring more side effects
• Blood levels are often checked every 2 weeks at the start and after each dose change. Reaching the target usually takes 3 to 5 months
• Keep the timing with meals consistent; fatty food increases how much is absorbed
• Mitotane is stored in body fat, so it can stay in the blood for weeks or months after stopping
• Caregivers should wear disposable gloves when handling the tablets

Living with the side effects

Watching for low steroid levels

Mitotane can switch off the adrenal gland's own steroid production (adrenal insufficiency), so doctors watch for it closely and give steroid replacement tablets. The label notes that higher-than-usual replacement doses may be needed, guided by free cortisol and ACTH blood tests.

The boxed warning: shock, serious injury or infection

The US label carries a boxed warning. If a person on mitotane goes into shock, has a serious injury or gets an infection, they can develop an adrenal crisis, which can be fatal. In that situation mitotane is stopped for the time being and steroids are given. Tell your doctor immediately about any injury, infection or illness, and before any planned surgery.

Your sick-day plan

The Endocrine Society's guideline on adrenal insufficiency says people on steroid replacement should be taught about "stress dosing" (taking extra steroid when ill), carry a steroid card, and keep an emergency steroid injection at home. Ask your endocrinologist to write down:

• how much extra steroid to take for fever, vomiting or a bad cold
• when to use the emergency injection, and who in the family should learn to give it
• which signs mean going straight to the emergency department

Keep a copy in your wallet and one at home, and share it with anyone who might take you to hospital.

Effects on the brain and nerves

Sleepiness, sluggishness and vertigo can happen, especially at higher blood levels. Don't drive or use machinery if you feel these effects. If thinking feels slowed, thyroid tests are worth checking, since mitotane can also lower thyroid hormone.

Other effects the label lists

• loss of appetite, stomach discomfort, nausea, vomiting and diarrhoea
• dizziness and rash
• high cholesterol and triglycerides
• low thyroid hormone, and low free testosterone in men
• non-cancerous ovarian cysts in women who haven't reached menopause, which can cause pelvic pain or bleeding
• liver injury and low blood counts, so blood tests are done before and during treatment

Medicines it doesn't mix with

• Spironolactone may block mitotane's action
• Hormonal contraceptives may stop working; the label advises non-hormonal contraception for as long as mitotane is detectable in the blood
• Warfarin should be avoided together with mitotane
• Many medicines broken down by the CYP3A liver enzyme can lose their effect, because mitotane speeds up that enzyme

Mitotane can harm an unborn baby, and breastfeeding is not advised during treatment.

Planning your supply so you never run short

Mitotane only works well once the blood level is in range, and that can take months to reach. A gap in tablets sets you back. One bottle holds 100 tablets of 500 mg, so how long it lasts depends entirely on your dose. Here's the simple arithmetic for the starting range on the label (your doctor sets your actual dose):

So at higher doses, a month of treatment can mean three or four bottles. Order the next lot well before the current one runs low, and tell us if your dose changes so the quantity on the permit still fits. The label says to store the tablets at 25°C, with short spells between 15°C and 30°C allowed, so keep them away from a hot kitchen or a car parked in the sun.

Getting Lysodren in India: what to send us

If your oncologist or endocrinologist prescribes mitotane and it isn't available through your hospital's usual supply, it can be imported for you on a personal-use basis. The patient applies to CDSCO on the Form 12A import permit application, and once the Form 12B permit is issued, NPP arranges the medicine from authorised channels and delivers it to the hospital or home as the prescription allows.

To start, these documents help us move fastest:

• the prescription, with the doctor's full name, contact details, registration number and stamp
• the dose and planned duration of treatment
• a short medical summary: diagnosis, stage and treatment so far
• the city and hospital where you'd like the medicine delivered

With the medicine you receive the commercial invoice, the packing list and the customs Bill of Entry, so the hospital pharmacy can match the batch and quantity to the papers.

If you want to check the prescription before sending it, our prescription checklist for imported medicines lists what it should include.

One more practical point: treatment works best when blood mitotane levels can be measured regularly. Ask your team early where these tests will be done, so the medicine and the monitoring are both in place before you start.

Questions Worth Taking to Your Next Appointment

• Is my tumour functioning? Which hormone is it making?
• What stage is it, and was the whole tumour removed?
• What was the Ki-67 score, and does it change what you recommend after surgery?
• Do you advise mitotane for me? For how long?
• Where will my mitotane blood levels be checked, and how often?
• Which steroid replacement will I take, and what should I do if I fall sick?
• Should I or my children have genetic testing?
• What did my CT show in Hounsfield units, and how big is the lump?
• Has my case been reviewed by a tumour board with an adrenal specialist?
• Can you write down my sick-day steroid plan?
• Are any clinical trials open to me?

Frequently Asked Questions

What is Lysodren used for?

Lysodren is used to treat adrenocortical carcinoma, a rare cancer of the adrenal gland. In the US it is approved for ACC that can't be removed by surgery, whether or not the tumour makes hormones. Doctors also use it after surgery in patients at high risk of the cancer returning.

What is the brand name of mitotane?

Lysodren is the brand name of mitotane, made by Esteve Pharmaceuticals. It comes as 500 mg tablets in bottles of 100.

Is adrenal cancer curable?

Sometimes, yes. When the cancer is found while it is still inside the gland and the whole tumour is removed, many people do well: SEER data put 5-year relative survival at 68% for localised adrenocortical carcinoma in adults. Once it has spread to distant organs, the aim of treatment is usually control rather than cure.

Is every adrenal lump cancer?

No. Most adrenal lumps found on scans are benign adenomas. Hormone tests and imaging help doctors decide which ones need surgery.

Why do I need steroid tablets while taking mitotane?

Mitotane works by damaging adrenal cortex cells, so your body can stop making enough cortisol (and sometimes aldosterone) of its own. The tablets replace what's missing. Without them you can feel very weak and unwell, and an infection or injury could trigger an adrenal crisis.

Is Lysodren chemotherapy?

It's often grouped with chemotherapy, and the American Cancer Society lists it under chemo for adrenal cancer. But it works differently from standard chemo: it is a tablet that targets adrenal cortex cells specifically, and it is taken daily for months, with blood-level checks.

What is the Lysodren price in India?

The cost depends on the dose your doctor prescribes, the number of bottles needed and import charges at the time of order, so we don't quote one fixed figure. Because a bottle lasts anywhere from about 8 to 25 days at label starting doses, the monthly cost also changes with the dose. Our team can give you a current quote for the Lysodren price in India once we see the prescription.

Why get it through NPP and not just any online seller?

From the outside, a counterfeit or heat-damaged bottle is hard to tell apart from a genuine one. Unregulated sellers may supply counterfeit, expired or wrongly stored stock with no paperwork. Through the Named Patient Program, NPP sources the medicine from the manufacturer or its authorised distributors, keeps the batch and import documents, and works within the CDSCO permit process, so you know where every box came from. We have been arranging imported medicines for patients in India since 2014.

Talk to Our Team

Facing a rare cancer is hard enough without chasing a medicine across borders. If your doctor has prescribed mitotane, or you're not sure whether it's the right next step and want to understand the import process first, get in touch with the NPP team. Share the prescription and we'll walk you through the documents, timeline and delivery, at your pace.

Please use this page to understand your options, not to make treatment choices on your own. Every decision about adrenal cancer care belongs with your oncologist or endocrinologist.

References

1. National Cancer Institute: What Is Adrenocortical Carcinoma?
2. National Cancer Institute: Adrenocortical Carcinoma Symptoms
3. National Cancer Institute: Adrenocortical Carcinoma Diagnosis and Prognosis
4. National Cancer Institute: Adrenocortical Carcinoma Treatment (PDQ), Health Professional Version
5. American Cancer Society: Key Statistics for Adrenal Cancer
6. American Cancer Society: Signs and Symptoms of Adrenal Cancers
7. American Cancer Society: Adrenal Cancer Causes, Risk Factors, and Prevention
8. American Cancer Society: Survival Rates for Adrenal Cancer
9. American Cancer Society: Treatment Choices by Stage of Adrenal Cancer
10. American Cancer Society: Chemotherapy for Adrenal Cancer
11. DailyMed: Lysodren (mitotane) tablets prescribing information, Esteve Pharmaceuticals (revised March 2026)
12. European Medicines Agency: Lysodren EPAR
13. Terzolo M, et al. Adjuvant mitotane versus surveillance in low-grade, localised adrenocortical carcinoma (ADIUVO). Lancet Diabetes Endocrinol. 2023;11(10):720-730
14. Fassnacht M, et al. Combination chemotherapy in advanced adrenocortical carcinoma (FIRM-ACT). N Engl J Med. 2012;366(23):2189-97
15. Nair LM, et al. Clinicopathological features and outcomes of adrenocortical carcinoma: a single institution experience. Indian J Urol. 2019;35(3):213-217
16. Sabaretnam M, et al. Adrenocortical carcinoma in children and adults: two decades experience in a single institution. Indian J Cancer. 2016;53(2):317-321
17. Fassnacht M, et al. European Society of Endocrinology Clinical Practice Guidelines on the management of adrenocortical carcinoma in adults (with ENSAT). Eur J Endocrinol. 2018;179(4):G1-G46
18. Fassnacht M, et al. European Society of Endocrinology clinical practice guidelines on the management of adrenal incidentalomas (with ENSAT). Eur J Endocrinol. 2023;189(1):G1-G42
19. Bornstein SR, et al. Diagnosis and Treatment of Primary Adrenal Insufficiency: An Endocrine Society Clinical Practice Guideline. J Clin Endocrinol Metab. 2016;101(2):364-89
20. Campbell MT, et al. Cabozantinib monotherapy for advanced adrenocortical carcinoma: a single-arm, phase 2 trial. Lancet Oncol. 2024;25(5):649-657
21. Habra MA, et al. Phase II clinical trial of pembrolizumab efficacy and safety in advanced adrenocortical carcinoma. J Immunother Cancer. 2019;7(1):253
22. Fassnacht M, et al. Adrenocortical carcinoma: a practical guide for clinicians. Lancet Diabetes Endocrinol. 2025;13(5):438-452
23. Named Patient Program: Prescription guidelines for imported medicines