After Pituitary Tumor Treatment

For most people with pituitary tumors, treatment can remove or control the tumor. For some, treatment might make the tumor go away completely, and they won't need any more treatment.

For others, the tumor might never go away completely, or they might need to keep getting 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, but many people find ways to manage their health and maintain a good quality of life.

Follow-up care

Talk with your doctor about developing a survivorship care plan for you. This plan can guide your next steps after treatment, including follow-up appointments and ways to stay healthy.

What’s usually in a survivorship care plan

A survivorship care plan might include:

• A suggested schedule for follow-up exams and tests
• A timeline for other tests, such as screening for other tumors, or monitoring for long-term health effects from your tumor or its treatment
• A list of possible late or long-term side effects, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions
• Reminders to keep seeing your primary care provider (PCP) for regular healthcare and cancer screening tests

Typical follow-up schedules

Follow-up care is very important after treatment for a pituitary tumor. Even if you've finished treatment, your doctors will still want to watch you closely.

Be sure to go to all of your visits with your healthcare team and follow their instructions carefully. Report any new or returning symptoms to your doctor right away. Ask questions if you don’t understand what your doctor says.

After surgery

Surgery is often the first treatment for many types of pituitary adenomas. If you had a functional (hormone-making) pituitary adenoma, tests of blood hormone levels can often be done within days or weeks after surgery to see if treatment worked. Blood tests will also be done to see how well the remaining normal pituitary gland is working.

Even if the results show that the tumor was removed completely and that pituitary function is normal, you'll still need regular visits with your doctors. Your hormone levels might need to be checked in the future 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 might also need to see other doctors, such as:

• A neurologist to check your brain and nerve function
• An ophthalmologist (eye doctor) to assess your vision

Some people might develop arginine vasopressin deficiency, formerly known as diabetes insipidus, after surgery. This usually goes away on its own, but in some people it might last longer. It can usually be treated. If the problem is mild, simply taking in enough fluids might be enough to treat it. For more severe problems, a drug called desmopressin can be taken either by nasal spray or by tablet.

After radiation therapy

If radiation therapy was your main treatment or was part of your treatment, you will need checkups for several years afterward. The response of the tumor to radiation therapy might take a long time and can be hard to predict. The benefits and side effects of treatment can be seen within months in some people, while in others it might take years to know how well it worked.

Your pituitary function will be checked at regular intervals. MRI scans are typically the main follow-up tests, along with blood tests of hormone levels, if your tumor made hormones.

Replacing hormones after surgery or radiation

It’s common for people to have low pituitary hormone levels after surgery or radiation therapy. If this happens to you, you'll probably need hormone replacement. For example:

• Thyroid hormone and adrenal steroids can be taken as pills.
• In men, testosterone can be given to restore sexual interest and help prevent osteoporosis (weak bones). Testosterone is available as a gel, cream, or skin patch, or it can be given as an injection every 1 to 2 weeks. Long-acting forms of testosterone can be given as injections or implanted as a pellet under the skin every few months.
• In young women, estrogen can be 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 having children might still be possible with hormone therapy.

Follow-up while on medicines

If you're taking medicine to treat a prolactinoma (prolactin-making tumor), your hormone levels will be 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 whether the response to treatment is partial or complete.

If you have a prolactin-producing microadenoma (smaller tumor), after about a year your doctor might recommend gradually lowering the dose and eventually stopping the drug and then checking your prolactin level. If it stays normal, you might be able to stay off the drug.

People taking medicines for corticotropin (ACTH)-producing or growth hormone (GH)-producing adenomas might have more frequent follow-up visits. Your hormone levels and symptoms will be watched carefully. People with GH-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.

Genetic counseling and testing

It’s important to consider whether your pituitary tumor might be part of a genetic syndrome in your family. Some people with pituitary tumors might want to talk to a genetic counselor about whether genetic testing to look for certain gene changes might be right for them. If a change is found, family members might want to be tested as well to see if they are at increased risk.