If You Have Adrenal Cancer

Tumors can start any place in the body. An adrenal tumor starts when cells in the adrenal glands grow out of control and crowd out normal cells. This makes it hard for the adrenal gland to work the way it should.

Most tumors found in the adrenal glands are called adenomas. These are not cancer (benign) and usually don’t cause problems. Adenomas are sometimes found by accident when someone has tests for other medical reasons.

If an adrenal tumor is cancerous, the cancer cells can spread to other parts of the body. Cancer cells in the adrenal glands can sometimes travel to lymph nodes and other organs. When cancer cells do this, it’s called metastasis

Cancer is always named for the place where it starts. Many cancers found in the adrenal glands did not start there. In these cases, the cancer has spread from other organs, so it is not considered or treated like adrenal cancer. For example, if lung cancer spreads to the adrenal gland, it is still called lung cancer.

The adrenal glands

The adrenals are small glands that are on top of the kidneys. The kidneys are located inside the upper part of the belly.

The adrenals have 2 parts called the cortex and medulla. The cortex is the outer part, while the medulla makes up the inside part of the adrenal gland. The main job of the adrenals is to make certain hormones. For example, some adrenal hormones help the body deal with stress and control blood pressure. Other adrenal hormones help develop sex organs and control puberty.

Different kinds of adrenal cancer

Cancer can start in either part of the adrenal gland (medulla or cortex). Tumors in the adrenal medulla are actually part of the nervous system and are not discussed here. Cancers of the adrenal cortex may be called adrenocortical carcinoma or adrenal cancer.

Questions to ask about diagnosis

• What type of adrenal tumor do I have? Can you please write the name down?
• Is the adrenal tumor cancerous or benign?
• What happens next?

How does the doctor know I have adrenal cancer?

Changes in certain hormone levels can cause symptoms of adrenal cancer. Symptoms can also happen if the tumor is large and is pressing on nearby organs. Signs and symptoms might include:

• Weight gain
• Increased fat in the neck and shoulders
• Extra hair growing on the face, chest, and back in women
• Irregular periods in women
• Easy bruising
• Weak bones
• High blood sugar
• High blood pressure
• Low potassium in blood tests

If you have signs of adrenal cancer, your doctor will ask you questions about your health and physically examine you. If signs are still pointing to adrenal cancer, more tests will be done. Here are some of the tests you may need:

Blood and urine tests: Certain blood and urine tests can tell the doctor more about your overall health.

Biopsy: For this test, the doctor takes out a small piece of tissue where the cancer seems to be. The tissue is checked for cancer cells.

CT or CAT scan: Uses x-rays to make detailed pictures of your body. CT scans can help doctors determine if the adrenal tumor is likely cancerous or not, as well as show if the cancer has spread.

MRI scan: Uses radio waves and strong magnets instead of x-rays to make detailed pictures. MRI scans are helpful in looking at the liver, brain and spinal cord. Like the CT scan, MRI can help doctors determine if the adrenal tumor is likely cancerous or not.

PET scan: PET scans use a type of sugar that can be seen inside your body with a special camera. If there is cancer, this sugar shows up as “hot spots” where the cancer is found. This test looks at the whole body. It can help if the doctor thinks the cancer has spread but doesn’t know where.

Questions to ask about testing

• What tests will I need to have?
• Who will do these tests?
• Where will they be done?
• How and when will I get the results?
• What do I need to do next?

How serious is my cancer?

If you have adrenal cancer, the doctor will want to find out if and how far it has spread. This is called staging. You might have heard other people say that their cancer was “stage 1” or “stage 2.” Your doctor will want to find out the stage of your cancer to help decide what type of treatment is best for you.

The stage describes the growth or spread of the cancer in the adrenal glands. It also tells if the cancer has spread to lymph nodes or other organs.

Your cancer can be stage 1, 2, 3, or 4. The lower the number, the less the cancer has spread. A higher number, like stage 4, means that the cancer has spread beyond the adrenals. Be sure to ask the doctor about the cancer stage and what it means for you.

Questions to ask about staging

• Do you know the stage of the cancer?
• If not, how and when will you find out the stage of the cancer?
• Would you explain to me what the stage means?
• What will happen next?

What kind of treatment will I need?

There are different ways to treat adrenal cancer, but the main types of treatment are surgery, radiation, chemotherapy, and immunotherapy. A lot of times treatments are used together.

The treatment plan that’s best for you will depend on:

• Whether the cancer has spread beyond the adrenal gland
• Whether the adrenal tumor can be removed
• Whether the patient can tolerate certain treatments, based on other health problems they may have

Whether the patient is willing to tolerate the side effects of the treatment

Surgery for adrenal cancer

Surgery that removes the adrenal gland is often part of the treatment for adrenal cancer if it can be done. There are different ways this surgery can be done. The way that’s best for you depends on the kind of adrenal cancer, how big it is, and where it is. Ask your doctor what kind of surgery you will have and what to expect.

Radiation treatments

Radiation uses high-energy rays (like x-rays) to kill cancer cells. One kind is aimed at the cancer from a machine outside the body. This is called external beam radiation. Another kind uses small seeds containing radiation and is placed next to or into the tumor. This is called brachytherapy and is not often used in adrenal cancer.

Chemotherapy

Chemo does not work very well for adrenal cancer. Certain chemo drugs are given into a vein, while one chemo drug (Mitotane) is given by mouth in pill form. The intravenous chemo is given in cycles or rounds. Each round of treatment is followed by a break. Treatment often lasts for many months. The oral chemo is taken daily. Chemo can also be given together. Ask your doctor what to expect.

Immunotherapy

Checkpoint inhibitors are drugs that work by helping the immune system find and attack the cancer cells. PD-1 is a checkpoint protein on immune cells called T cells. It normally acts as a type of “off switch” that helps keep the T cells from attacking other cells in the body. It does this when it attaches to PD-L1, a protein on some normal (and cancer) cells. When PD-1 attaches to PD-L1, it basically tells the T cells to leave the other cells alone. Some cancer cells have large amounts of PD-L1, which helps them hide from an immune system attack. Pembrolizumab (Keytruda) is a drug that targets PD-1.  By blocking PD-1, pembrolizumab boosts the immune system response against adrenal cancer cells.

What about other treatments I hear about?

You may hear about other non-traditional ways to treat the cancer or treat your symptoms. These treatments may be vitamins, herbs, special diets, and other methods. Some of these are known to help, but many have not been tested. A few have even been found to be harmful. Tell your doctor about anything you’re thinking of using, whether it’s a vitamin, a diet, or anything else.

Questions to ask about treatments

• What treatment do you think is best for me?
• What’s the goal of this treatment? Do you think it could cure the cancer?
• Will treatment include surgery? If so, who will do the surgery?
• What will the surgery be like?
• What side effects could I have from these treatments?
• What can I do about side effects that I might have?
• Is there a clinical trial that might be right for me?
• What about special vitamins or diets that friends tell me about? How will I know if they are safe?
• How soon do I need to start treatment?
• What should I do to be ready for treatment?
• Is there anything I can do to help the treatment work better?
• What’s the next step?

What will happen after treatment?

Your health care team will be your first source of information and support, but there are other resources for help when you need it. You might or might not need ongoing treatment and care for adrenal cancer. But regularly scheduled tests and check-ups are still needed to make sure you are doing well, even if more treatment is not. Ask your doctor what to expect.

Having adrenal cancer and dealing with surgery and treatment can be hard, but it can also be a time to look at your life in new ways. You might be thinking about how to improve your health. Call us at 1-800-227-2345 or talk to your health care team to find out what you can do to feel better.

You can’t change the fact that you have or had adrenal cancer. What you can change is how you live the rest of your life – making healthy choices and feeling as good as you can