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Why is it so Difficult for Doctors to Diagnose Adrenal Cancer?

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Dr. Tobias Carling MD, PhD, FACS
Jan 14th, 2022

January is Adrenal Cancer Awareness month. Many individuals and even healthcare providers and doctors know very little about adrenal cancer, and how to diagnose it. Unfortunately, adrenal cancer is often aggressive, and is not diagnosed in time for effective treatment. If adrenal cancer already has spread outside the adrenal gland, the cancer is often lethal. If you ever had an adrenal mass found on a scan, you need to have your adrenal hormones checked and make sure it is not an adrenal cancer. You want to make sure that your adrenal cancer is diagnosed while surgery is still possible. 

Why is it so Difficult for Doctors to Diagnose Adrenal Cancer?

  • Doctors lack an effective screening test to diagnose adrenal cancer

  • Most doctors have never met an adrenal cancer patient during their training making it hard for them to diagnose adrenal cancer

  • Adrenal cancers overproducing hormones can cause many different symptoms which can make it difficult to diagnose for doctors

  • Adrenal cancers are tucked in the very back of the abdomen and grow very large before they cause pain and discomfort

  • Small adrenal masses on scans (CT and MRI) may be overlooked as a way to diagnose early adrenal cancer


Figure 1. MRI is used to diagnose an adrenal cancer (arrow) arising from the left adrenal gland. Note the heterogeneity, and how it is crowding the surrounding organs.

Doctors lack an effective screening test to diagnose adrenal cancer

In contrast to many other cancers, there is no effective screening test to diagnose adrenal cancer. For adrenal cancer there is no simple test like mammography for breast cancer, or colonoscopy for colorectal cancer.

We lack an effective screening test to diagnose adrenal cancer. It is true that some adrenal cancers over produce hormones and then in those scenarios we can test for those hormones meaning cortisol, testosterone, estrogen, androgens, DHEAS. This assists to diagnose adrenal cancer. Learn about hormone testing for adrenal tumors.

However not all adrenal cancers are producing these hormones. X-ray test such as CT and MRI scans have their role in diagnosing adrenal cancer but are not effective enough to function as screening test. To learn about incidentally discovered adrenal masses (so called incidentalomas) go here adrenal incidentaloma 

Certainly, any patient who has undergone a CT scan of their abdomen should make sure that their doctor and radiologist look at the adrenal glands to diagnose any masses of the adrenal glands.

Most doctors have never met an adrenal cancer patient during their training making it hard for them to diagnose adrenal cancer

Most doctors in primary care, internal medicine or surgery have never met an adrenal cancer patient. Even doctors who specialize in endocrinology or even endocrine surgery can have gone through their entire training without meeting an adrenal cancer patient.

Also, very few oncologists in the United States have seen many adrenal cancer patients during their entire career. This means that there are very few doctors who have a significant expertise to diagnose adrenal cancer.

The initial evaluation of a patient to diagnose adrenal cancer should include blood tests to measure adrenal hormones in the circulation (blood and urine hormone tests). Since most of these cancers make too much hormone (cortisol, testosterone, estrogen, other androgens, DHEAS, aldosterone, etc.), this is an obvious place to start. Keep in mind, however, that most non-cancerous tumors of the adrenal glands (benign adenomas and hyperplasia) may also secrete too much hormones. Therefore, demonstrating overproduction of adrenal hormones helps diagnose an adrenal tumor, yet it does not always help distinguish between benign and malignant (cancerous) tumors. Extremely high levels, however, are more commonly produced by malignant tumors (adrenal cancer).

Table. The different stages of Adrenal Cancer

Adrenal cancers overproducing hormones can cause many different symptoms which can make it difficult to diagnose for doctors

Many patients will seek medical attention with some sort of bodily change which typically comes on quite slowly (usually over 1 to 3 years). When excess female hormones are produced in a female it can be hard to diagnose, except at extremes of age such as early puberty in a child, or the return of vaginal bleeding in a post-menopausal woman. The same is true for excess testosterone in a male. The opposite, however, will often make the diagnosis obvious, such as when a woman begins to develop male characteristics (deeper voice, excess body hair) or when a man begins to develop enlarged breasts (gynecomastia). Some of these hormone overproduction diseases have specific names:

  • Hypercortisolism; Cushing's syndrome (excess cortisol produced). Read about Cushing’s Syndrome
  • Adrenogenital syndrome (excess sex-steroids produced)
  • Virilization (acquisition of male traits in a female because of excess testosterone production)
  • Feminization (acquisition of female traits in a male because of excess estrogen production)
  • Precocious puberty (puberty occurring too early because of excess sex steroids produced)
  • Hyperaldosteronism; Conn's syndrome (excess aldosterone leading to hypertension and low potassium). Read about a Conn's Syndrome tumor

Adrenal Cushing's syndrome is by far the most common hormonal syndrome associated with adrenal cancer. Read more about Cushing’s syndrome symptoms, diagnosis, and treatment.

Figure 2. CT scan showing an adrenal cancer that has spread to the liver (metastasis). This adrenal cancer produces too much estrogen in a man causing feminization.

Adrenal cancers are tucked in the very back of the abdomen and grow very large before they cause pain and discomfort

The adrenal glands are located on top of the kidneys very far back in the abdomen (technically in the retroperitoneum). That means that they can grow quite large before they cause any symptoms. For patients that have no hormone production, it is not unusual for the adrenal cancer to grow to the size of a cantaloupe before it causes pain in the abdomen and the flank. Almost all patients with adrenal cancer seek medical attention because of pain unless they have obvious hormone overproduction.

Small adrenal masses on scans (CT and MRI) may be overlooked as a way to diagnose early adrenal cancer

An adrenal incidentaloma (sometimes termed "incidentally found" adrenal mass, or adrenal nodule) is an adrenal growth that is diagnosed when a radiological scan (X-ray, CT scan, or MRI) is performed for indications other than for adrenal disease. Most commonly adrenal incidentalomas are found on CT scans of the abdomen for some other reason.

Adrenal incidentalomas are quite common and become more common as we age. In autopsy studies of people who died of natural causes, about 6 % of all people have an adrenal mass or adrenal tumor that they were completely unaware of. Therefore, small adrenal tumors are common, occurring in about 4-5 percent of us in our lifetime, so you can imagine that lots of people having a CT scan will have an adrenal tumor found that they did not know about.

The tricky part for doctors is to diagnose the small adrenal cancers among all these tumors. Unfortunately, many doctors believe that all small adrenal tumors are not cancerous, so many of our adrenal cancer patients have had a diagnosis of an adrenal mass based on a previous scan, but no doctor took it seriously. They did not have a follow up scan and they did not have their adrenal hormone levels checked. This is very bad!

If you ever had an adrenal mass diagnosed on a CT scan, and you did not have it removed, it is very important you have a follow up scan to make sure it has not grown or is overproducing any of the adrenal hormones (cortisol, testosterone, estrogen, other androgens, DHEAS, aldosterone, etc.), which is worrisome for cancer.

Figure 3. The green ribbon is the symbol for the Adrenal Cancer Awareness month


Additional Resources: 

Learn more about the Carling Adrenal Center

Learn more about Dr. Tobias Carling

Learn more about our sister surgeons at the Norman Parathyroid Center, Clayman Thyroid Center and Scarless Thyroid Surgery Center

Learn more about the brand-new Hospital for Endocrine Surgery


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Author

Dr. Tobias Carling MD, PhD, FACS

Dr. Carling is the most experienced adrenal surgeon in the United States, and by far the world's most knowledgeable surgeon-scientist when it comes to adrenal gland function and disease, adrenal tumors and cancer, and all forms of adrenal gland surgery. Dr. Carling has more experience with advanced minimally invasive adrenal and endocrine operations than any surgeon in the United States. A fellow of the American College of Surgeons, Dr. Carling is a significant member of both the American Association of Endocrine Surgeons (AAES) and the International Association of Endocrine Surgeons (IAES).
Dr. Carling is the most experienced adrenal surgeon in the United States, and by far the world's most knowledgeable surgeon-scientist when it comes to adrenal gland function and disease, adrenal tumors and cancer, and all forms of adrenal gland surgery. Dr. Carling has more experience with advanced minimally invasive adrenal and endocrine operations than any surgeon in the United States. A fellow of the American College of Surgeons, Dr. Carling is a significant member of both the American Association of Endocrine Surgeons (AAES) and the International Association of Endocrine Surgeons (IAES).
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Operating Exclusively at the Hospital for Endocrine Surgery

The Carling Adrenal Center is part of the world's largest endocrine surgery practice. We perform adrenal surgery only but are part of a large group of surgeons who specialize in surgery of the parathyroid and thyroid glands as well. We operate exclusively at the brand-new Hospital for Endocrine Surgery in Tampa, a full-service hospital dedicated to the surgical treatment of tumors and cancers of the adrenal, thyroid, parathyroid, and thyroid glands. As a group, we have performed over 2,500 adrenal operations, over 40,000 thyroid operations, and over 60,000 parathyroid operations--more than 20 times the experience of any other US hospital or university. Our surgeons are recognized as the highest level of experts worldwide.