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«University of Michigan Comprehensive Cancer Center Multidisciplinary Adrenal Cancer Clinic ii A Patient’s Guide to Adrenocortical Cancer ©2012 ...»

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A Patient’s Guide to

Adrenocortical Cancer

University of Michigan

Comprehensive Cancer Center


Adrenal Cancer Clinic


A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center

Anatomy of Adrenal Gland


A Patient’s Guide to Adrenocortical Cancer

©2012 University of Michigan Comprehensive Cancer Center


A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center Table of Contents I. PREPARING: Information to help you make treatment decisions A. About the Adrenal Glands.......................................... 1

1. What are the adrenal glands?.................................... 1

2. What do the adrenal glands do?.................................. 1

3. What is cancer and how does it affect the adrenal glands?.............. 3 a. Tumors of the Adrenal Medulla................................. 3 b. Tumors of the Adrenal Cortex.................................. 4 c. Tumors that Spread to the Adrenal Glands....................... 4

4. How common is adrenocortical cancer and who is at risk?............. 4

5. Is it hereditary?............................................... 5

6. What are the symptoms of adrenocortical cancer?.................... 5

7. How is it diagnosed?........................................... 6

8. How is it staged?.............................................. 9 II. TREATMENT: Information about the treatment of adrenal cancer A. Treatment of Adrenal Cancer...................................... 11

1. What are the treatment options?................................. 11

2. How does a patient decide on treatment?.......................... 11

3. Surgery.................................................... 12 a. Adrenalectomy...................................

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The doctors and healthcare staff at the University of Michigan Endocrine Oncology Program created this book to explain adrenal cancer and the treatment options available to you. This is not a comprehensive guide to treatment options – they are changing every day. Rather, we hope this guide helps you move forward with a firm understanding of adrenal cancer, how it is treated, and what the experience may include. With this information in hand, you will be prepared to make thoughtful decisions along with your medical team.

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Everyone has 2 adrenal glands. They are small, about the size of a walnut, and shaped like a pyramid. This helps them sit in position on top of each kidney. They are sometimes called ‘supra-renal glands’ which is Latin for ‘above the kidney’.

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What Do the Adrenal Glands Do?

The adrenal glands may be small, but they play an important role in the way you think and feel. The adrenal glands are organs that make and secrete hormones. The hormones produced by these small powerhouses affect the way every tissue, organ and gland in your body works.

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The adrenal glands play an important role in how your body responds to stress.

The adrenal medulla makes a chemical called epinephrine that is also called adrenaline. Epinephrine is responsible for the regulation of blood pressure, blood flow and your body’s acute response to stress.

The adrenal cortex makes a variety of hormones including:

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A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center What is Cancer and How Does it Affect the Adrenal Glands?

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Cells that continue to grow and divide without control become a mass or tumor.

This mass will eventually affect how an organ works. The original site of the abnormal cell growth is called the cancer’s “primary site”. In adrenal cancer, the primary site is the adrenal gland.

Abnormal or uncontrolled cells can also grow and invade nearby organs and structures. This spreading is called metastasis. Tumors that invade and spread are called malignant or cancerous, while benign adrenal tumors never spread or invade other organs.

Tumors of the Adrenal Medulla Tumors in the adrenal medulla are not common. There are 2 types called pheochromocytomas and neuroblastomas. The information in this booklet will not address these tumor types. Sources of further information about medullary tumors are found in the RESOURCES section of this book. Additional information regarding adrenal medullary tumors can be found at the Patient Education Resource Center on level B1 of the Cancer Center.

A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center Tumors of the Adrenal Cortex


Non-cancerous tumors of the adrenal cortex are called adenomas. These are small tumors that are usually seen on a CT scan or MRI of the abdomen. They are the most common type of adrenal tumor and are most often silent tumors that cause no symptoms. Some call these tumors incidentalomas because they are very often found incidentally when x-ray studies are done for other reasons.

Cancerous tumors that develop in the adrenal cortex are called adrenal cancer or more specifically, adrenocortical cancer. These are primary adrenal cancers;

meaning they haven’t started somewhere else in the body and spread to the adrenal glands. These cancers are very rare. The rest of this book will talk more in detail about this type of tumor.

Tumors that Spread to the Adrenal Gland

Cancers that begin in other areas of the body commonly spread or metastasize to the adrenal gland. This is different from primary adrenal cancer which starts in the adrenal gland. Cancer that spreads to the adrenal gland is still called cancer of the primary site. So, if lung cancer spreads to the adrenal gland, it is called and treated as “metastasized lung cancer of the adrenal gland’; it is not called or treated as ‘adrenal cancer’.

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Primary tumors of the adrenal cortex are very rare, occurring in one person in every million. In the United States, about 300-500 people are diagnosed with adrenocortical cancer every year. They usually occur in only 1 adrenal gland, but can occur in both.

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A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center In general, there are no known causes of adrenocortical cancer; therefore there

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Is Adrenal Cancer Hereditary?

No genetic link has been found for the development of adrenocortical cancer.

However, patients with some genetic defects may be at greater risk. Patients with the rare genetic disorder called Li-Fraumeni syndrome are an example of this. These patients have a defect (called a mutation) of a tumor suppression gene, the p53 gene. This defect can lead to the development of several different kinds of cancers, including adrenocortical cancer. Another genetic disorder called Beckwith-Wiedmann syndrome has been linked to a higher risk for developing adrenocortical cancer.

What are the Symptoms of Adrenal Cancer?

Most adrenocortical cancers are found after they have been growing for years.

Fewer than 30% of adrenocortical cancers are confined to the adrenal gland at the time of diagnosis.

The most common symptom reported by patients with adrenocortical cancer is pain in the back or side (called the flank). Unfortunately, this type of pain is common and does not directly suggest a disease of the adrenal cortex. In adrenocortical cancer, these symptoms usually are due to pressure caused by the tumor as it compresses organs, nerves and other structures around the adrenal gland. Some patients describe feeling full with no appetite because of pressure on the stomach and other abdominal organs.

Adrenal cancers act in one of two ways. They secrete hormones and are called functional tumors, or they do not and are called non-functional tumors. Some adrenal cancers, and even some benign adenomas, are functional and secrete excessive amounts of hormones. Approximately 60% of patients will experience

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Most adrenal cancers have grown for a long time before they are diagnosed.

They are often found after the patient seeks treatment for the symptoms caused by the cancer. However, some tumors are found when a physician orders imaging testing for another condition.

Patients with symptoms suspicious for adrenal cancer will undergo tests to determine the cause of these symptoms. The first step is a thorough medical history and physical exam to determine the extent of symptoms and their possible causes.

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A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center not always indicate an adrenal cancer. Some blood and urine tests

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• Computed Tomography (CT) The CT scan can show small tumors as well as important blood vessels that the tumor might be growing into or around. A CT scan can look at surrounding organs for spread (metastasis) of the cancer into lymph nodes or other organs in the abdomen.

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A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center How is Adrenocortical Cancer Staged?

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Because adrenal cancer is so uncommon, there are several staging systems that may be used. This system of staging is the most recently developed and implemented by the World Health Organization (WHO).

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What are the Treatment Options?

International consensus conferences have recently agreed to standardized approaches in the treatment of adrenocortical cancer. In general, adrenal cancers confined to the gland should be surgically removed. Those with spread to nearby or distant organs may be treated with surgery along with other therapies, or may be ineligible for surgical removal. Adrenal cancer can be a very aggressive cancer. The prognosis is best when the cancer can be

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How Does a Patient Decide on Treatment?

When patients are first diagnosed with adrenal cancer, they are overwhelmed.

Shock and stress can make it difficult to think of everything you might want to know. It is helpful to have family or friends come with you for discussions about treatment.

Because adrenal cancer is rare and few doctors have experience treating it, most patients seek evaluation at a multidisciplinary adrenal cancer or endocrine clinic. A multidisciplinary adrenal cancer clinic often involves surgeons, medical oncologists, endocrine specialists, radiologists, endocrine pathologists and radiation oncologists along with other medical specialists who will review your individual case and make treatment recommendations. Treatment generally starts within a few weeks of the first evaluation. There is time to discuss your options and to learn more about adrenal cancer, treatment approaches, and the clinical trials that are available to you.

A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center Surgery Adrenal cancer is an aggressive cancer. The only known cure is complete surgical removal of the cancer. In many cases, patients come to their doctor after the cancer has spread to other organs in the body, or the cancer has spread to places that cannot be removed, and the cancer is considered inoperable. If the tumor can be removed, it is very important that your surgery is performed by a surgeon experienced in the treatment of adrenal cancer (most surgeons see one adrenal cancer patient in a lifetime).The covering of the tumor should not be broken during surgery and a wide margin of normal


tissue around the tumor should be removed to make sure resection is complete and to minimize the chance of the cancer coming back. Careful preoperative evaluation and planning is very important in adrenal cancer patients to assure the best outcome.

There are two types of surgery for adrenal cancer – open and laparoscopic.

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