If You Have a Pituitary Tumor

What is a pituitary tumor?

A tumor is an abnormal mass of body tissue that results from cells growing out of control. Some tumors are cancer, but others are not.

Tumors can start any place in the body. A tumor that starts in the pituitary gland is called a pituitary tumor (or a pituitary adenoma).

The pituitary is a gland that sits in a small space below your brain in the middle of your head. Its job is to make hormones that affect other parts of the body.

Pituitary tumors are very rarely cancer. They don’t grow very large or spread to other parts of the body. But pituitary tumors can still cause health problems, for 2 main reasons:

• Some tumors make too much of a certain hormone. This can make it hard for the body to work the way it should.
• Some tumors grow big enough to crowd out normal cells in the small space around the pituitary. This can lead to vision problems, headaches, or other issues. The tumor might also press on the normal part of the pituitary, which can result in not enough hormones being made.

Types of pituitary tumors

There are many types of pituitary tumors. They are grouped by if the tumor makes too much of a hormone and if so, which hormone it makes.

• Non-functional adenomas do not make enough hormones to cause problems.
• Functional adenomas make hormones. The most common type is called a prolactinoma because it makes to much of a hormone called prolactin. There are other, less common types. Your doctor can tell you more about the type of tumor you have.

Questions to ask the doctor

• Why do you think I have a pituitary tumor?
• Is there a chance I don’t have a tumor?
• Would you please write down the kind of tumor you think I might have?
• Do I need to see any other types of doctors?
• What will happen next?

How does the doctor know I have a pituitary tumor?

Most of these tumors are found when they cause symptoms that make the person go to the doctor. But sometimes they might be seen first on a scan of the head that’s done for some other reason.

If you have symptoms that might be from a pituitary tumor, the doctor will ask you questions about your health and examine you. If signs are pointing to a pituitary tumor, more tests will be done. Here are some of the tests you may need:

Blood and urine tests: These tests can be used to check the levels of hormones in your body. They can also tell the doctor more about your overall health.

MRI scan: MRIs use radio waves and strong magnets to make detailed pictures of the inside of your head. This is often the first test done to look for a pituitary tumor and see how big it is.

CT scan (CAT scan): This is a special kind of x-ray that takes detailed pictures of the inside of your head.

Questions to ask the doctor

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

What kind of treatment will I need?

Pituitary tumors might be treated in different ways:

• Surgery might be used to take the tumor out.
• Radiation might be used to shrink the tumor or control its growth.
• Drugs might be used to keep the tumor from making hormones or stop the problems the extra hormone is causing.

Here are the key things your doctor needs to know to treat your pituitary tumor:

• How big is the tumor?
• Has it grown into nearby structures (like the brain or bones of the skull)?
• Is the tumor causing problems (like headaches or changes in how you see)?
• Is it making hormones? If so, which one?

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

• The chance that a treatment will cure the tumor or help in some way
• Your age and overall health
• Your feelings about the treatment and the side effects that come with it

No matter what treatment your doctor suggests, talk about what side effects you might have.

Side effects depend on the type of treatment that’s used. Most get better or go away after treatment ends. Some might last longer. There are ways to treat most side effects. If you have side effects, talk to your treatment team so they can help.

Clinical trials

Clinical trials are research studies that test new drugs or other treatments in people. They compare standard treatments with newer ones that may be better.

If you would like to be in a clinical trial, start by asking your doctor if your clinic or hospital conducts clinical trials.

Clinical trials are one way to get the latest treatment. They are also one of the best ways for doctors to find better ways to treat pituitary tumors. If your doctor can find one that’s studying the kind of tumor you have, it’s up to you whether to take part. And if you do sign up for a clinical trial, you can always stop at any time.

What about other treatments I hear about?

When you have a pituitary tumor you might hear about other ways to treat the tumor or treat your symptoms that are not standard medical treatments. These treatments may be vitamins, herbs, special diets, and other things.

Some of these might help, but many have not been tested. Some have been shown not to help. A few have even been found to be harmful. Talk to your doctor about anything you’re thinking about using, whether it’s a vitamin, a diet, or anything else.

Questions to ask the doctor

• Does my tumor need to be treated? Why or why not?
• What treatment do you think is best for me? Why?
• What's the goal of treatment? Do you think it could cure the tumor?
• Will treatment include surgery? If so, who will do the surgery?
• What will the surgery be like?
• What will I look like after surgery?
• Will I need other types of treatment, too?
• What's the goal of these treatments?
• 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?

You’ll be glad when treatment is over. But it can be hard not to worry about the tumor coming back. Even when a pituitary tumor never comes back, you might still worry about it.

For years after treatment ends, you will see your doctor. Be sure to go to all of these follow-up visits. At first, your visits may be every few months. Then, the longer you’re tumor-free, the less often the visits are needed. Lab tests or imaging tests (like MRI scans) may be done to look for signs of a tumor. Your doctor will tell you which tests should be done and how often, based on the type of tumor and the type of treatment you had.

Having a pituitary tumor and dealing with 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 or talk to your doctor to find out what you can do to feel better.

You can’t change the fact that you have a pituitary tumor. What you can change is how you live the rest of your life – making healthy choices and feeling as well as you can.