The pituitary gland is connected directly to part of the brain called the hypothalamus. This provides a key link between the brain and the endocrine system, a collection of glands in the body that make hormones. Hormones are substances released into the blood that control how other organs work. The hypothalamus releases hormones into tiny blood vessels connected to the pituitary gland. These then cause the pituitary gland to make its own hormones. The pituitary is considered the “master control gland” because it makes the hormones that control the levels of hormones made by most of the other endocrine glands in the body.
The pituitary gland has 2 parts, the anterior pituitary and the posterior pituitary. Each has distinct functions.
Most pituitary tumors start in the larger, front part of the pituitary gland known as the anterior pituitary. This part of the gland makes these hormones that control other endocrine glands:
The smaller, back part of the pituitary gland, called the posterior pituitary, is really an extension of brain tissue from the hypothalamus. The posterior pituitary is where hormones made by the hypothalamus (vasopressin and oxytocin) are stored and released into the bloodstream.
Tumors rarely start in the posterior pituitary.
Almost all pituitary tumors are benign (not cancer) glandular tumors called pituitary adenomas. These tumors are called benign because they don’t spread to other parts of the body, like cancers can. Still, even benign pituitary tumors can cause major health problems because they are close to the brain, may invade nearby tissues (like the skull or the sinuses), and because many of them make excess hormones.
Pituitary cancers (called pituitary carcinomas) are very rare.
These benign tumors do not spread outside the skull. They usually stay in the sella turcica (the tiny space in the skull that the pituitary gland sits in). Sometimes they grow into the boney walls of the sella turcica and nearby tissues, like blood vessels, nerves, and sinuses. They don’t grow very large, but they can have a big impact on a person’s health.
There is very little room for tumors to grow in this part of the skull. So, if the tumor gets larger than about a centimeter (about half an inch) across, it may grow upward, where it can press on and damage nearby parts of the brain and the nerves that arise from it. This can lead to problems like vision changes or headaches. (See Signs and Symptoms of Pituitary Tumors.)
Pituitary adenomas can be divided into 2 categories based on size:
Pituitary adenomas are also classified by whether they make too much of a hormone and, if they do, which type they make. If a pituitary adenoma makes too much of a hormone it's called functional. If it doesn’t make enough hormones to cause problems it's called non-functional.
Functional adenomas: Most of the pituitary adenomas that are found make excess hormones. The hormones can be detected by blood tests or by tests of the tumor when it is removed with surgery. Based on these results, pituitary adenomas are classified as:
The kind of hormone an adenoma makes strongly affects what signs and symptoms it causes. It also affects which tests are used for diagnosis, the choice of treatment, and the patient’s outlook.
Non-functional adenomas: Pituitary adenomas that don’t make excess hormones are called non-functional adenomas or null cell adenomas. They account for about 3 in 10 of all pituitary tumors that are found. They are usually found as macroadenomas, causing symptoms because of their size as they press on nearby structures.
Cancers of the pituitary gland are rare. Only a few hundred have ever been described in medical journals. They can occur at any age, but most are found in older people. These cancers usually make hormones, just like many adenomas do.
Pituitary carcinomas look like pituitary adenomas under a microscope, so doctors have trouble telling them apart. In fact, the only way to tell if a pituitary tumor is a carcinoma and not an adenoma is when the tumor spreads to another part of the body not near the pituitary gland. Most often pituitary carcinoma spreads to the brain, spinal cord, meninges (the covering of the brain and spinal cord), or bone around the pituitary. Rarely, these cancers spread to other organs such as the liver, heart, or lungs.
One of the key issues with pituitary tumors is that there's currently no way to know if a benign pituitary adenoma will become cancer and grow and spread to other parts of the body.
There are several other types of benign tumors that grow in the region of the pituitary, as well as some malignant (cancerous) ones. All are much less common than pituitary adenomas.
Teratomas, germinomas, and choriocarcinomas are all rare tumors that usually occur in children or young adults. They don’t develop from the hormone-making cells of the pituitary gland itself, but they can grow into the pituitary and damage it.
Rathke cleft cysts and gangliocytomas of the pituitary are rare tumors that are usually found in adults.
Craniopharyngiomas are slow-growing tumors that start above the pituitary gland but below the brain itself. They sometimes press on the pituitary and the hypothalamus, causing hormone problems. They'e more common in children, but they can be seen in older adults. For more on these tumors, see Brain and Spinal Cord Tumors in Children.
Cancers that start in some other parts of the body (like the breast) can sometimes spread to the pituitary. These cancers are classified and treated based on where they started (their primary site) and are not thought of as pituitary tumors.
The rest of our information focuses mainly on benign pituitary tumors (pituitary adenomas).
Research into pituitary tumors is taking place in many university hospitals, medical centers, and other institutions around the world.
Doctors now have a better understanding of the genetic basis of pituitary tumors. This is already leading to improvements in genetic testing for people who are suspected of having multiple endocrine neoplasia, type I (MEN1) or other syndromes. This work is also helping doctors better understand non-functioning adenomas, such as those that don't respond to somatostatin drugs, which may lead to new treatments for these tumors. This might also make it possible to identify genes and markers that could help doctors know whether a benign pituitary adenoma will likely go on to spread and become a pituitary carcinoma (cancer).
Imaging tests such as MRI scans continue to improve, leading to better accuracy in finding and determining the size of new tumors and those that come back after treatment. Studies are now looking at whether using MRI during surgery might help to more completely remove tumors. New scans , are also being tested in clinical trials.
Surgical techniques are improving, allowing doctors to remove tumors with fewer complications than ever before. Studies are now looking at what's the best surgery for different types and sizes of tumors, as well as ways to combine surgical techniques or use 2-staged surgery to get better results. Robotic surgery is also being looked at as a way to reach these tumors and limit side effects. Surgery is often used to treat pituitary tumors, and doctors are looking at ways to remove the tumor, but spare as much of the pituitary gland as possible. This may mean fewer hormone issues after surgery and could give patients a better quality of life.
Radiation therapy techniques are improving as well, letting doctors focus radiation more precisely on tumors and limiting the damage to nearby normal tissues.
New ways of using radiation therapy are also being studied. For instance, doctors are using radioactive implants put right into the tumors. They're also looking at whether radiation after surgery helps keep pituitary tumors from coming back.
Progress is being made in the medicines used to treat both pituitary tumors and the side effects of some other forms of treatment. For instance, studies are looking at whether steroid treatment is really needed when surgery is done for tumors that cause a decrease in the hormone ACTH. (This can lead to low levels of the steroids your body makes and can cause serious side effects.)
Researchers are also studying some newer drugs. An example is lapatinib (Tykerb), a drug that targets a protein called HER2, which is found in large amounts on some fast-growing cells (including some pituitary tumor cells). This drug is already used to treat breast cancer, and it is now being studied for use against pituitary tumors. Temozolomide (Temodar ) is another example. It's a drug used to treat certain brain tumors. It's now being studied to see if it can help treat and improve outcomes in aggressive pituitary tumors.
Because many of the drugs used to treat these tumors must be taken for the rest of a person's life, researchers are trying to make some of these drugs into forms that are easier to use. Octreotide is a drug commonly used to treat certain pituitary tumors. It's give as a shot 3 times a day. Clinical studies are looking at whether a newly created pill form of octreotide works as well.
Many other drugs are also being studied in clinical trials.
Pituitary tumors are usually found when a person goes to the doctor because of symptoms they're having. But sometimes these tumors don’t cause symptoms, and they're found when doing medical tests done for other health problems.
If there’s a reason to suspect you might have a pituitary tumor, your doctor will use one or more tests to find out. Signs and symptoms might suggest that you could have a pituitary tumor, but tests are needed to be sure of the diagnosis and find out what kind of pituitary tumor it is.
If your symptoms lead your doctor to believe that you might have a pituitary tumor, the first step is take a complete medical history to check for risk factors and to learn more about your symptoms. Your doctor may ask about your family history of tumors or other problems to see if you might have an inherited genetic syndrome, such as multiple endocrine neoplasia, type I (MEN1).
Your doctor will also examine you to look for possible signs of a pituitary tumor or other health problems. This may include exams to look for vision or nervous system problems that could be caused by a tumor.
If a pituitary tumor is strongly suspected, your doctor may refer you to an eye doctor to check your vision, as pituitary tumors can damage nerves leading to the eyes. The most common test is to measure how well you can see. The doctor may also test your field of vision (or visual fields). At first, pituitary tumors only press on part of the optic nerves. This often leads to the loss of peripheral vision, meaning that you can't see things off to the side without actually looking right at them. Eye doctors have special instruments that can test for this.
You might also be referred to other doctors, such as an endocrinologist (a doctor who treats diseases in glands that secrete hormones) or a neurosurgeon (a doctor who uses surgery to treat brain and pituitary tumors), who might order other tests.
If your doctor suspects you might have a hormone-producing pituitary tumor, hormone levels in your blood and/or urine will be measured.
A physical exam may alert the doctor to look for this tumor because the signs and symptoms are often very distinctive.
The next step is to check the levels of growth hormone and insulin-like growth factor-1 (IGF-1) in your blood samples, which are taken in the morning after an overnight fast. When growth hormone levels are high, they cause the liver to make more IGF-1. Testing the IGF-1 level can be more helpful than checking the level of growth hormone. IGF-1 level doesn’t change much during the day, while the level of growth hormone can go up and down.
If both levels are very high, the diagnosis is clearly a pituitary tumor. If the levels are slightly increased, another test called a glucose suppression test is often done to be sure. You'll be asked to drink a sugary liquid, then the levels of growth hormone and blood sugar will be measured at certain times. The normal response to suddenly taking in so much sugar is a drop in growth hormone levels. If the growth hormone levels stay high, a pituitary adenoma is likely the cause.
Most of the signs and symptoms of ACTH-secreting tumors come from having too much cortisol (an adrenal steroid hormone). But quite a few diseases can cause the body makes too much cortisol, which is called Cushing’s syndrome. If you have symptoms suggesting this syndrome, you'll need tests to see if it’s caused by a pituitary tumor or something else.
One of the tests used measures the levels of cortisol in your saliva late at night to see if they stay elevated. (They normally drop at night.) Another may include measuring levels of cortisol and ACTH in blood samples taken at different times of the day. You also may be asked to collect all of your urine over a 24-hour period, which is then tested to measure your daily production of cortisol and other steroid hormones. One test involves taking a dose of a powerful, cortisone-like drug called dexamethasone, then checking blood or urine cortisol levels. Often more than 1 of these tests is needed to help distinguish ACTH-secreting pituitary tumors from other diseases, such as adrenal gland tumors, that can cause similar symptoms.
Blood prolactin levels can be measured to check for a prolactinoma.
Luteinizing hormone (LH) and follicle-stimulating hormone (FSH) blood levels can be checked to see if you have a gonadotropin-secreting tumor. Levels of related hormones, such as estrogen, progesterone, and testosterone, are often checked as well.
Tests to measure blood levels of thyrotropin (TSH) and thyroid hormones can usually identify people with a thyrotropin-secreting adenoma.
A pituitary adenoma is considered non-functional if it doesn’t make too much of any pituitary hormone. Pituitary hormone levels are not high in people with non-functional tumors. Sometimes, though, blood levels of pituitary hormones may actually be low because the adenoma crowds out the cells that normally make these hormones.
Diabetes insipidus can occur if the part of the pituitary that stores the hormone vasopressin (ADH) is damaged, which leads to too much water being lost in the urine. This condition can be caused by pituitary macroadenomas (or carcinomas in rare cases), or by tumors starting in parts of the brain or nerves next to the pituitary gland. It can also be a side effect of surgery to treat pituitary tumors or tumors near the pituitary gland.
In many cases, this diagnosis is made with tests that measure the amount of urine made over a 24-hour period, sodium and glucose levels in the blood, and osmolality (total salt concentration) of the blood and urine. If these test results are not clear, then a water deprivation study may be done. In this test, you are not allowed to drink fluids for several hours. The test is often done overnight. If your body is not making enough vasopressin, you'll continue to make urine even though you are not taking in any fluid. You may also be given an injection of vasopressin to see if this corrects the problem.
Corticotroph (ACTH-secreting) adenomas may be too small to be seen on imaging tests such as MRI scans. When the ACTH level is high, but a person’s MRI is normal, a special blood test may be useful to find the tumor.
For this test , catheters (long, soft, small tubes) are put into veins on each inner thigh through tiny cuts in the skin and are guided all the way up into the petrosal sinuses near the base of the brain. The sinuses hold 2 small veins that drain the blood from each side of the pituitary gland. Blood is taken from these 2 veins and your arm. Then an injection of corticotropin-releasing hormone (CRH, a hormone from the hypothalamus that normally causes the pituitary to make ACTH) is given. Blood samples are taken again to see if the ACTH level goes up a lot, or is higher on one side than the other. If it is, the source of the high ACTH level is a pituitary tumor.
Imaging tests use x-rays, magnetic fields, or other means to create pictures of the inside of your body. They may be done to look for pituitary tumors or to see if they have grown into nearby structures. In some cases, an imaging test of the head done for another reason may show a pituitary tumor.
MRI scans use radio waves and strong magnets to create detailed pictures of the inside of the body.
They are very helpful in looking at the brain and spinal cord and are considered to be the best way to find pituitary tumors of all types. MRI images are usually more detailed than those from CT scans (see below). They can show macroadenomas of the pituitary gland, as well as most microadenomas. But MRI might not detect microadenomas that are smaller than 3 mm (about 1/8 inch) across. Sometimes the MRI scan will show a small change in the pituitary that has nothing to do with the patient’s symptoms. Between 5% and 25% of healthy people have some minor abnormality of the pituitary gland that shows up on an MRI scan.
A CT scan uses x-rays to create detailed cross-sectional images of part of your body. CT scans can find a pituitary adenoma if it's large enough, but MRI scans are used much more often to look at the brain and pituitary gland.
In diagnosing tumors of most parts of the body, imaging tests and blood tests may strongly suggest a certain type of tumor, but a biopsy (removing a sample of the tumor to examine under a microscope) is usually the only way to be certain of the diagnosis. In many cases, doctors won't treat a tumor until a biopsy has been done.
But a biopsy isn't usually needed before treating a pituitary tumor. One reason is that the hormone tests for some types of adenomas are very accurate, so a biopsy isn’t likely to provide much more information. Biopsies in this part of the body can also pose a very small risk of serious side effects. On top of this, some types of adenomas can be treated without surgery, using medicines or radiation therapy.
When pituitary tumors are removed by surgery, they're examined under a microscope to determine their exact type. Special stains may be used on the tumor to color the areas making hormones and other tests may be done, too. This helps classify the tumor.
Staging is the process of determining how far a cancer has spread. This is done to guide treatment and to help determine the most likely outcome for the patient. But pituitary tumors are nearly always benign (not cancer), so there is no staging system for them. Pituitary carcinoma (cancer) is too rare for a staging system to have been developed.
The most useful information for guiding the treatment of a pituitary adenoma is:
Not all pituitary tumors (called pituitary adenomas) cause symptoms. But when they do, they can cause many different types of symptoms. The first signs of a pituitary adenoma often depend on whether the tumor is functional (making excess hormones) or non-functional (not making excess hormones).
Functional adenomas can cause problems because of the hormones they release. Most of the time, a functional adenoma makes too much of a single pituitary hormone. These tumors are often found while they are still fairly small (microadenomas). Symptoms from functional adenomas are described below, based on which hormone they make.
Tumors that aren’t making excess hormones (non-functional adenomas) often become large (macroadenomas) before they are noticed. These tumors don't cause symptoms until they press on nearby nerves, parts of the brain, or other parts of the pituitary.
Non-functional adenomas that cause no symptoms are sometimes found because of an MRI or CT scan done for other reasons. These tumors are now being found more often as more MRI and CT scans of the brain are done. These might be the most common pituitary tumors. As long as they aren’t causing problems, they'e often just watched closely without needing treatment.
Pituitary macroadenomas (benign tumors larger than 1 cm) and carcinomas (cancers), whether functional or not, can be large enough to press on nearby nerves or parts of the brain. This can lead to symptoms such as:
Vision problems occur when the tumor “pinches” the nerves that run between the eyes and the brain. Sudden loss of vision, loss of consciousness, and even death can result from sudden bleeding into the tumor.
Macroadenomas and pituitary carcinomas can also press on and destroy the normal parts of the pituitary gland. This causes a shortage of one or more pituitary hormones. Low levels of some body hormones such as cortisol, thyroid hormone, and sex hormones cause symptoms. Depending on which hormones are affected, symptoms might include:
Large tumors can sometimes press on the posterior (back) part of the pituitary, causing a shortage of the hormone vasopressin (also called anti-diuretic hormone or ADH). This can lead to diabetes insipidus. In this condition, too much water is lost in the urine, so the person urinates often and becomes very thirsty as the body tries to keep up with the loss of water. If left untreated, this can cause dehydration and altered blood mineral levels, which can lead to coma and even death. Diabetes insipidus is easily treated with a drug called desmopressin, which replaces the vasopressin. (Diabetes insipidus is not related to diabetes mellitus, in which people have high blood sugar levels.)
The major symptoms from these tumors are caused by having too much growth hormone (GH). These effects are quite different in children and adults.
In children, high GH levels can stimulate the growth of nearly all bones in the body. The medical term for this condition is gigantism. Signs include:
In adults, the long bones (especially in the arms and legs) can’t grow any more, even when GH levels are very high. So they don’t grow taller and develop gigantism. But bones of an adult's hands, feet, and skull/face can grow throughout life. This causes a condition called acromegaly. Signs and symptoms are:
Many of these changes can occur very slowly, and people might not notice them until they look at an old picture of themselves or try to put on a hat or ring they haven’t worn in many years.
High ACTH levels cause the adrenal glands to make steroid hormones such as cortisol. Having too much of these hormones causes symptoms that doctors group together as Cushing’s syndrome. When the cause is too much ACTH production from the pituitary it's called Cushing’s disease. In adults, the symptoms can include:
Most of these symptoms can also occur in children. Children with Cushing’s disease may also stop growing and have problems with school performance.
Prolactinomas are most common in young women and older men.
If the tumor continues to grow, it can press on nearby nerves and parts of the brain, which can cause headaches and vision problems.
In females who don’t have periods (such as girls before puberty and women after menopause), prolactinomas might not be noticed until they cause these symptoms.
These rare tumors make too much thyroid-stimulating hormone (TSH), which then causes the thyroid gland to make too much thyroid hormone. This can cause symptoms of hyperthyroidism (overactive thyroid), such as:
These rare tumors make luteinizing hormone (LH) and/or follicle-stimulating hormone (FSH). This can cause irregular menstrual periods in women or low testosterone levels and decreased interest in sex in men.
Many gonadotropin-secreting adenomas actually don’t make enough hormones to cause symptoms, so they are basically non-functional adenomas. These tumors may grow large enough to cause symptoms such as headaches and vision problems before they are found. (See the symptoms for large tumors above.)
The main treatment for many pituitary tumors is surgery. How well the surgery works depends on the type of tumor, its exact location, its size, and whether it has spread into nearby structures.
This is the most common way to remove pituitary tumors. Transsphenoidal means that the surgery is done through the sphenoid sinus, a hollow space in the skull behind the nasal passages and below the brain. The back wall of the sinus covers the pituitary gland.
About 10,000 pituitary tumors are diagnosed each year in the United States. Almost all of these tumors are benign pituitary adenomas. Very few pituitary tumors are cancers (carcinomas).
The actual number of pituitary tumors may be much higher than the number of tumors that are found each year. When examining people who have died or who have had imaging tests (like MRI scans) of their brain for other health problems, doctors have found that as many as 1 out of 4 people may have a pituitary adenoma without knowing it. These tumors are often small and never cause any symptoms or health problems, so very few of them would normally be diagnosed at all.
Pituitary tumors can occur at any age (including in children), but they are most often found in older adults.
A risk factor is anything that changes a person’s chance of getting a disease. For example, smoking is a risk factor for cancer of the lung and many other cancers.
But having a risk factor, or even many risk factors, does not mean that you will get the disease. And many people who get the disease may have few or no known risk factors.
Pituitary tumors have very few known risk factors, and these are related to genetics. There are no known environmental or lifestyle-related risk factors for pituitary tumors. Though science has suggested that people who are overweight or obese might be at increased risk.
Most people who develop pituitary tumors don’t have a family history of the disease. But rarely, pituitary tumors can run in families.
Sometimes when pituitary tumors run in families, they are found along with other types of tumors as part of an inherited genetic syndrome (see the next section).
Sometimes, though, only pituitary tumors occur. Researchers have found that some of these are due to certain changes in a person’s genes that are inherited from a parent. (See What Causes Pituitary Tumors?)
Most often, though, the cause of pituitary tumors that run in families is not known.
Pituitary tumors can be a part of a syndrome that includes an increased risk of other types of tumors. These syndromes are caused by abnormal changes (mutations) in a person’s genes. They include:
Multiple endocrine neoplasia, type I (MEN1): This is a hereditary condition in which people have a very high risk of developing tumors of 3 glands: the pituitary, parathyroid, and pancreas. It is caused by changes in the gene MEN1, and is passed on to about half of the children of an affected parent. If the MEN1 syndrome affects your family, you should discuss testing for this condition with your doctor.
Multiple endocrine neoplasia, type IV (MEN4): This rare syndrome includes increased risks of pituitary tumors and certain other tumors. MEN4 is caused by inherited changes in a gene called CDKN1B.
McCune-Albright syndrome: This syndrome is caused by changes in a gene called GNAS1 that aren’t inherited but occur before birth. People with this syndrome have brown patches on their skin (called café-au-lait spots) and develop many bone problems. They can also have hormone problems and pituitary tumors.
Carney complex: This is a rare syndrome in which people can have heart, skin, and adrenal problems. They also have a high risk of a number of different types of tumors, including pituitary tumors. Many cases are caused by inherited changes in the gene PRKAR1A, but some are caused by changes in other genes that have not yet been identified.
You can learn more about inherited cancer syndromes in Family Cancer Syndromes.
Scientists don’t know exactly what causes most pituitary tumors. During the past few years, they have made great progress in understanding how certain changes in a person’s DNA can cause cells in the pituitary to produce a tumor. DNA is the chemical in each of our cells that makes up our genes – the instructions for how our cells function. We usually look like our parents because they are the source of our DNA. But DNA affects more than how we look.
Some genes control when cells grow, divide into new cells, and die. Genes that help cells grow, divide, and stay alive are called oncogenes. Genes that slow down cell division or cause cells to die at the right time are called tumor suppressor genes. Tumors can be caused by DNA changes that turn on oncogenes or turn off tumor suppressor genes.
Some people inherit gene mutations (changes) from their parents that greatly increase their risk for developing pituitary tumors. Some of these mutations were described in Risk Factors for Pituitary Tumors Members of families with these genetic syndromes can have genetic testing to find out if they are affected.
But often, gene mutations occur during life rather than having been inherited. In some types of cancer, these acquired mutations can be caused by outside exposures, such as radiation or cancer-causing chemicals. Most pituitary tumors are not cancers, and there are no known environmental causes for these tumors. The gene changes in these tumors might just be random events that sometimes happen when a cell divides, without having an outside cause.
Some non-hereditary (sporadic) pituitary tumors – those that don’t run in families – have acquired mutations in a gene called AIP. Many growth hormone-secreting adenomas have an acquired mutation in a gene called GNAS1. These mutations are much less common in other types of pituitary adenomas.
Changes in other genes have been found in other types of pituitary adenomas, but it’s not clear if abnormal genes are always needed for pituitary tumors to form. What is known is that there is a loss of the regulatory mechanism that normally keeps the pituitary cells from growing and making too much hormone.
Because there are no known lifestyle-related or environmental causes of pituitary tumors, it’s important to remember that there is nothing people with these tumors could have done to prevent them.
The risk of many types of cancer can be reduced with certain lifestyle changes (such as staying at a healthy weight or quitting smoking). But pituitary tumors have not been linked with any known outside risk factors. As a result, there is no known way to prevent these tumors at this time.
Still, for people at high risk of pituitary tumors (because of certain inherited syndromes), there may be ways to find and treat them early, before they cause problems. (See Can Pituitary Tumors Be Found Early?)
No imaging tests or blood tests are recommended to screen for pituitary tumors in people who are not at increased risk. (Screening is testing for tumors in people without any symptoms.)
For members of families known to be at increased risk because of a genetic syndrome such as multiple endocrine neoplasia, type I (MEN1), doctors often recommend regular blood testing of pituitary hormone levels. These tests increase the odds of finding a tumor early so that it can be removed completely, increasing the chance for a cure.
Rarely, a pituitary tumor is found early because a person has a CT or MRI scan of the brain for an unrelated problem. These tumors are sometimes referred to as incidentalomas, meaning they are found incidentally (by accident).
Functional pituitary adenomas (tumors that make excess hormones like prolactin or ACTH) are often found when they are still small because the excess hormones cause symptoms.
Non-functional pituitary tumors are less likely to be found early because they don’t cause symptoms until they’ve grown large enough to press on normal pituitary cells, nerves, or parts of the brain near the pituitary.
As you deal with your tumor and its treatment, you need to have honest, open discussions with your health care team. Feel free to ask any question, no matter how small it might seem. Here are some questions you might want to ask. Be sure to add your own questions as you think of them. Nurses, social workers, and other members of the treatment team may also be able to answer many of your questions.
Along with these sample questions, be sure to write down any others you want to ask. For instance, you might want information about recovery times so that you can plan your work and activity schedule. Or you may want to ask about clinical trials for which you may qualify.
For most people with pituitary tumors, treatment can remove or control the tumor. The end of treatment can be both stressful and exciting. You may be relieved to finish treatment, but it’s hard not to worry about the tumor growing or coming back. This is a very common concern in people who have had a pituitary tumor.
It may take a while before your fears lessen. But it may help to know that many pituitary tumor survivors have learned to live with this uncertainty and are living full lives.
For other people, the tumor might never go away completely. Some people may continue to get medicines or other treatments to help keep the tumor in check. Learning to live with a tumor that doesn't go away can be difficult and very stressful. It has its own type of uncertainty.
Follow-up care is very important after treatment for pituitary tumors. Even if you have completed treatment, your doctors will still want to watch you closely. Keep all of your appointments with your health care team and follow their instructions carefully. Report any new or returned symptoms to your doctor right away. Ask questions if you don’t understand what your doctor says.
Surgery is often the first treatment for many types of pituitary adenomas. If you had a functional (hormone-making) pituitary adenoma, hormone level tests can often be done within days or weeks after surgery to see if treatment workedl. Blood tests will also be done to see how well the remaining normal pituitary gland is working. If the results show that the tumor was removed completely and that pituitary function is normal, you'll still need regular visits with your doctor. Your hormone levels may need to be checked again in the future to check to see if the adenoma comes back. Whether or not the tumor made hormones, MRI scans are often done as a part of follow-up. Depending on the size of the tumor and the extent of surgery, you may also be seen by a neurologist to check your brain and nerve function and an ophthalmologist (eye doctor) to assess your vision.
After radiation treatment, you will need check-ups for several years. The response of the tumor to radiation therapy is hard to predict, and while the benefits and side effects of treatment can be seen within months, some might take years to know how well it worked. Your pituitary function will be checked at regular intervals. MRI scans will be the main follow-up tests, along with testing hormone levels if your tumor made hormones.
It’s common for people to have low pituitary hormone levels after surgery or radiation therapy. These people will need hormone replacement. Thyroid hormone and adrenal steroids can be taken as pills. In men, testosterone can be given to restore sex drive and help prevent osteoporosis (weak bones). Testosterone is available as a gel, liquid, or patch applied to the skin. It can also be given as a monthly injection or implanted as a pellet under the skin every few months. In young women, estrogen is given either by pills or a skin patch to avoid early menopause. Often, progesterone is given along with estrogen. Pituitary hormone deficiency can affect a woman’s ability to have children. But it may be possible with hormone therapy.
If you're taking medicine for a prolactinoma, you will have your hormone levels checked at least once or twice a year. If an MRI shows that the tumor has shrunk after treatment, the MRI might not need to be repeated, depending on the size of the tumor and whether the response is partial or complete. If you have a prolactin-producing microadenoma, you may be able to stop drug treatment after several years of therapy. Your doctor might recommend stopping the drug and then checking your prolactin level. If it stays normal, you may be able to stay off the drug.
For patients getting drug therapy for corticotropin (ACTH)-producing or growth hormone-producing adenomas, follow-up may be more frequent. Your hormone levels and symptoms will be watched carefully. People with growth hormone-producing adenomas have an increased risk of developing high blood pressure and heart failure. They also have a higher risk of getting colon cancer. Periodic check-ups for these conditions are recommended.
Diabetes insipidus (see Signs and Symptoms of Pituitary Tumors) can be a short-term result of surgery, but in some cases it might last longer. It can usually be treated. If the problem is mild, simply taking in enough fluids might treat this problem. For more severe problems, the drug called desmopressin is given either by nasal spray or by tablet. It's always important to drink enough fluids to avoid dehydration.
It’s also important to consider whether your pituitary tumor might be a clue to a genetic syndrome in your family. Some people with pituitary tumors might be able to have genetic tests done to look for certain gene changes. If a change is found, family members might want to be tested as well to see if they are at increased risk.
Sometimes people with large or fast-growing pituitary adenomas may be disabled or have their lives shortened because the tumor or its treatment destroys vital brain tissue near the pituitary gland, but this is rare. In general, when a pituitary tumor is not cured, people live out their lives but may have to deal with problems caused by the tumor or its treatment, such as vision problems or hormone levels that are too high or too low.
Talk with your doctor about developing a survivorship care plan for you. This plan might include:
Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their tumor coming back, this could happen.
At some point after your treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.
If you have (or have had) a pituitary tumor, you probably want to know if there are things you can do that might lower your risk of it growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.
Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. But we do know that these types of changes can have positive effects on your health.
So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to help lower the risk of a pituitary tumor growing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.
Dietary supplements are not regulated like medicines in the United States – they don't have to be proven effective (or even safe) before being sold, but there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.