For most people with pituitary tumors, treatment may remove or destroy the tumor. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about tumor growing or coming back. (When a tumor comes back after treatment, it is called recurrence.) 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 tumor survivors have learned to live with this uncertainty and are living full lives. Our document, Living With Uncertainty: The Fear of Cancer Recurrence gives more detailed information on this.
For others, the tumor may never go away completely. Some people may continue to get treatment with medicines or other treatments to help keep the tumor in check. Learning to live with a tumor that does not go away can be difficult and very stressful. It has its own type of uncertainty.
Follow-up care
Follow-up care is particularly important after treatment for pituitary tumors. Even if you have completed treatment, your doctors will still want to watch you closely. It is very important to keep all appointments with your health care team and follow their instructions carefully. Report any new or recurring symptoms to your doctor right away. Ask questions when you don't understand what your doctor says.
Surgery is often the first treatment for several types of pituitary adenomas. If you had a functional pituitary adenoma, hormone measurements can often be done within days or weeks after surgery to see if the treatment was successful. Blood tests will also be done to see how well the remaining normal pituitary tissue is functioning. If the results show that the adenoma was completely removed and that pituitary function is normal, you will still need periodic visits with your doctor. Your hormone levels may need to be checked again in the future to check for recurrence (return) of the adenoma. Regardless of whether or not the tumor made hormones, MRI scans may be 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 and an ophthalmologist (eye doctor) to assess the extent of any damage to the brain or to your vision.
After radiation treatment, you will need checkups for several years. The response to radiation therapy is harder to predict, and although side effects can occur within months, some may take years to appear. 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 is not uncommon for patients to develop pituitary hormone deficiency after surgery or radiation therapy. These people will need hormone replacement. Thyroid hormone and adrenal steroids are supplied by oral medicines. In men, testosterone can be given to restore sex drive and prevent osteoporosis (weak bones). Testosterone is available as a gel or patch applied to the skin. It can also be given as a monthly injection. In young women, estrogen is given either by pills or a skin patch to avoid premature menopause. Often, progesterone is given along with estrogen. Pituitary hormone deficiency may affect a woman's ability to have children. However, if she wishes to become pregnant, it may be possible to restore fertility by hormone therapy.
If you are 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 may not have 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 may recommend stopping the drug and then checking your prolactin level. If it remains normal, you may be able to stay off the drug.
For patients receiving drug therapy for corticotropin (ACTH)-producing or growth hormone-producing adenomas, follow-up may be more frequent. Your hormone levels and symptoms will be monitored 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 checkups for these conditions are recommended.
Diabetes insipidus (excessive urination) can also be easily treated. If the problem is mild, simply taking in enough fluids may treat this problem. For more severe problems, desmopressin is given either by nasal spray or by tablet to control excessive urination. It is always important to drink enough fluids to avoid dehydration.
It is also important to consider whether your pituitary tumor might be a clue to a genetic syndrome in your family. In the near future, people with pituitary tumors might be able to have genetic tests done on a sample of the tumor and blood tests to look for gene abnormalities. If indicated, their family members might have blood tests as well.
Occasionally, 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 unusual. In general, when a pituitary tumor is not cured, people live out their lives but may have to deal with the ongoing side effects of the tumor or its treatment, such as hormone overproduction or hormone deficiencies.
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