ON THIS PAGE: You will read about your medical care after treatment for the tumor is completed and why this follow-up care is important. Use the menu to see other pages.
Care for people diagnosed with a pituitary gland tumor does not end when active treatment has finished. Your health care team will continue to check that the tumor has not come back, manage any side effects, and monitor your overall health. This is called follow-up care.
Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. Once surgery to remove a pituitary gland tumor is done, the patient is usually monitored by both an endocrinologist and a neurosurgeon. Follow-up care for a pituitary gland tumor may include regular tests to measure hormone levels and MRI scans, usually done yearly, to learn how well treatment worked. Talk with your doctor about any new changes or symptoms you experience. Some people experience mood and personality changes because the hormone levels are not quite correct.
Side effects depend on a variety of factors, including the tumor’s size, the length and dosage of treatment(s), and your overall health. Specifically, treatment of a pituitary gland tumor can cause:
Fatigue. Fatigue is extreme exhaustion or tiredness. It is the most common problem that people with a pituitary tumor experience. Patients who feel fatigue often say that even a small effort, such as walking across a room, can seem like too much. A pituitary gland tumor may cause fatigue if it lowers levels of cortisol, thyroid hormone, or growth hormone. High levels of cortisol can weaken muscles, which may also cause fatigue.
Gastrointestinal upset. Patients being treated with medicines such as bromocriptine or cabergoline for a prolactin-secreting pituitary tumor known as prolactinoma may have gastrointestinal upset. This may sometimes limit the patient’s ability to take a particular medication.
Gallstones. People being treated for too much growth hormone may develop gallstones, which are rock-like formations of cholesterol and bile salts in the gallbladder or bile duct. Therefore, people receiving this treatment must be monitored for gallstones throughout the treatment.
Vision problems. Changes in eyesight are a common side effect. If vision worsens, it may be possible that a tumor is growing again. For this reason, it is important to get eye exams done regularly.
Rehabilitation may be recommended, and this could mean any of a wide range of services, such as physical therapy, occupational therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent as possible. Learn more about this type of rehabilitation.
Learn more about the importance of follow-up care.
Watching for recurrence
One goal of follow-up care is to check for a recurrence, which means that the tumor has come back. A tumor recurs because small areas of tumor cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.
During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the type of tumor first diagnosed and the types of treatment given.
As most pituitary tumors are noncancerous, these tumors do not usually spread to other parts of the body. However, most people treated for a pituitary tumor need regular follow-up tests to make sure that the tumor has not come back.
In addition, patients may be at risk for developing other types of tumors. For example, patients with too much growth hormone have a higher risk of developing colon cancer or thyroid cancer, but only if the tumor was not completely removed during surgery and growth hormone levels are still high. People with multiple endocrine neoplasia type 1 (MEN1 syndrome) or Carney complex need regular screening for the other tumors associated with those conditions.
The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress.
Managing long-term and late side effects
Most people expect to have side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years after treatment has ended. Long-term and late effects can include both physical and emotional changes.
People with changes to their vision may need specialized care after the treatment for the tumor. Studies show that people with Cushing's disease are most affected after treatment, mostly because they are also most affected before treatment, meaning recovery often takes longer. Some people with too much prolactin or growth hormone may also be significantly affected.
Radiation therapy can have late effects, in particular decreasing hormone production from the pituitary gland. These late effects can take 5 to 7 years to develop, but they do not occur in all patients. Testing should be done every year after radiation therapy ends to detect hormone deficiencies as soon as possible. This is so treatment can begin right away. Talk with your doctor about the symptoms or signs to watch for during your long-term recovery.
Talk with your doctor about your risk of developing such side effects based on your diagnosis, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may have certain physical examinations, scans, or blood tests to help find and manage them.
Keeping personal health records
You and your doctor should work together to develop a personalized follow-up care plan. Be sure to discuss any concerns you have about your future physical or emotional health. ASCO offers forms to help keep track of the treatment you received and develop a survivorship care plan when treatment is completed.
This is also a good time to talk with your doctor about who will lead your follow-up care. Some survivors continue to see their specialist, while others transition back to the care of their primary care doctor or another health care professional. This decision depends on several factors, including the type of tumor, side effects, health insurance rules, and your personal preferences.
If a doctor who was not directly involved in your pituitary gland treatment will lead your follow-up care, be sure to share your treatment summary and survivorship care plan forms with them, and with all future health care providers. Details about your treatment are very valuable to the health care professionals who will care for you throughout your lifetime.
The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a diagnosis. Use the menu to choose a different section to read in this guide.