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Welcome to the new Cushing's Help and Support FAQ (frequently asked questions) page. This new area will be a compilation of our visitors most frequent questions. Questions and answers are still being added.

Please select either a category on the left, or type in a keyword to search the database of questions and answers. Please note that there are several questions waiting to be answered at this time. Your question will be answered as soon as possible. If your question is very urgent, you might want to check the message boards to see if your question has been answered, or add it yourself.

IMPORTANT: The information and material posted on this Web site is intended as general reference information only. Specific facts and circumstances may alter the concepts and applications of materials and information described herein. The information provided is not a substitute for professional advice and should not be relied upon in the absence of such professional advice specific to whatever facts and circumstances are presented in any given situation.



Treatments     List of Categories

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  • Are all types of pituitary radiation the same?

    No. There are different methods of delivering radiation to the pituitary gland.

    Conventional (fractionated) radiation refers to delivery of a small amount of radiation daily for 4 to 5 weeks.

    Stereotactic radiation refers to delivery of a precisely focused beam of radiation, usually as one treatment. The decision as to which type of radiation to administer must be made only after a careful review of the MRI scan to assess the size and location of the residual tumor. A large tumor which is near the optic chiasm (eye nerves) is not suitable for stereotactic radiation because of the intensity of the single treatment and risk of damage to vision. In general, stereotactic radiation is reserved for a small residual tumor that is not near the optic chiasm.

    The answer to this question about pituitary tumors was developed by Mary Lee Vance, M.D., Professor of Medicine and Neurosurgery at the University of Virginia. Dr. Vance is an endocrinologist specializing in the treatment of pituitary diseases.

    For more information from Dr Vance, see Pituitary Tumors Frequently Asked Questions

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  • Is radiation necessary in all patients? Who should have radiation to the pituitary?

    Radiation to the pituitary is not the first line of treatment for most pituitary tumors. It does not produce an immediate effect to lower excessive hormone production or shrink the tumor. Radiation is used when there is tumor remaining after surgery or when surgery cannot be performed. Pituitary radiation may take several years to be effective. For example, in patients with acromegaly (excessive growth hormone production), growth hormone levels may remain elevated for 10 to 20 years after conventional (fractionated) radiation.

    The answer to this question about pituitary tumors was developed by Mary Lee Vance, M.D., Professor of Medicine and Neurosurgery at the University of Virginia. Dr. Vance is an endocrinologist specializing in the treatment of pituitary diseases.

    For more information from Dr Vance, see Pituitary Tumors Frequently Asked Questions

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  • If a tumor was successfully removed why are regular visits, blood tests and MRI scans necessary?

    Complete removal of a tumor is the desired goal. However, a small minority of patients will have a recurrence of the tumor.

    Approximately 10% of patients will have a tumor recurrence within 10 years. Since it is not possible to predict which tumor will recur, all patients need regular medical follow up.

    Additionally, a tumor may recur 20 years or more after the original treatment.

    If the tumor is producing a hormone that causes particular symptoms (Cushing's, Acromegaly, prolactin tumor), the patient is usually the first to recognize this. Measurement of the appropriate hormone level in blood or urine is the most accurate method of determining if there is a tumor recurrence. Non secretory tumors do not produce an excessive hormone that can be measured in the blood or urine and the MRI scan is the best method of surveillance.

    The answer to this question about pituitary tumors was developed by Mary Lee Vance, M.D., Professor of Medicine and Neurosurgery at the University of Virginia. Dr. Vance is an endocrinologist specializing in the treatment of pituitary diseases.

    For more information from Dr Vance, see Pituitary Tumors Frequently Asked Questions

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  • What is the best treatment for a pituitary tumor?

    The best treatment depends on the type of pituitary tumor.

    Prolactin-producing tumors are most successfully treated with medical therapy (pills). In over 90% of patients, medical therapy reduces tumor size and blood prolactin levels. In approximately 8-10% of patients, medical treatment is not completely effective and surgery may be necessary.

    There is medical treatment for Acromegaly (excessive growth hormone production), but this is usually administered after surgical removal of the tumor if there is persistent excessive growth hormone production (discussed in more detail below).

    The best treatment for other types of pituitary tumors is removal of the tumor by an experienced neurosurgeon who frequently performs pituitary surgery. Although most neurosurgeons have some experience with pituitary surgery, only a few have devoted their career to pituitary surgery and have the "best" records of success.

    The answer to this question about pituitary tumors was developed by Mary Lee Vance, M.D., Professor of Medicine and Neurosurgery at the University of Virginia. Dr. Vance is an endocrinologist specializing in the treatment of pituitary diseases.

    For more information from Dr Vance, see Pituitary Tumors Frequently Asked Questions

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  • How is Cushing's treated?

    Treatment depends on the specific reason for cortisol excess and may include surgery, radiation, chemotherapy or the use of cortisol-inhibiting drugs.

    If the cause is long-term use of glucocorticoid hormones to treat another disorder, the doctor will gradually reduce the dosage to the lowest dose adequate for control of that disorder. Once control is established, the daily dose of glucocorticoid hormones may be doubled and given on alternate days to lessen side effects.

    Pituitary Adenomas Several therapies are available to treat the ACTH-secreting pituitary adenomas of Cushing's disease. The most widely used treatment is surgical removal of the tumor, known as transsphenoidal adenomectomy. Using a special microscope and very fine instruments, the surgeon approaches the pituitary gland through a nostril or an opening made below the upper lip. Because this is an extremely delicate procedure, patients are often referred to centers specializing in this type of surgery. The success, or cure, rate of this procedure is over 80 percent when performed by a surgeon with extensive experience. If surgery fails, or only produces a temporary cure, surgery can be repeated, often with good results. After curative pituitary surgery, the production of ACTH drops two levels below normal. This is a natural, but temporary, drop in ACTH production, and patients are given a synthetic form of cortisol (such as hydrocortisone or prednisone). Most patients can stop this replacement therapy in less than a year.

    For patients in whom transsphenoidal surgery has failed or who are not suitable candidates for surgery, radiotherapy is another possible treatment. Radiation to the pituitary gland is given over a 6-week period, with improvement occurring in 40 to 50 percent of adults and up to 80 percent of children. It may take several months or years before patients feel better from radiation treatment alone. However, the combination of radiation and the drug mitotane (Lysodren) can help speed recovery. Mitotane suppresses cortisol production and lowers plasma and urine hormone levels. Treatment with mitotane alone can be successful in 30 to 40 percent of patients. Other drugs used alone or in combination to control the production of excess cortisol are aminoglutethimide, metyrapone, trilostane and ketoconazole. Each has its own side effects that doctors consider when prescribing therapy for individual patients.

    Ectopic ACTH Syndrome To cure the overproduction of cortisol caused by ectopic ACTH syndrome, it is necessary to eliminate all of the cancerous tissue that is secreting ACTH. The choice of cancer treatment--surgery, radiotherapy, chemotherapy, immunotherapy, or a combination of these treatments--depends on the type of cancer and how far it has spread. Since ACTH-secreting tumors (for example, small cell lung cancer) may be very small or widespread at the time of diagnosis, cortisol-inhibiting drugs, like mitotane, are an important part of treatment. In some cases, if pituitary surgery is not successful, surgical removal of the adrenal glands (bilateral adrenalectomy) may take the place of drug therapy.

    Adrenal Tumors Surgery is the mainstay of treatment for benign as well as cancerous tumors of the adrenal glands. In Primary Pigmented Micronodular Adrenal Disease and the familial Carney's complex, surgical removal of the adrenal glands is required.

    For more information, see the Treatments page.

    Many people on the Message Boards have experience with various treatments. You can read what they've said or post your own questions on the Pre and Post Surgery Message board.

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  • How are adrenal adenomas treated?

    Adrenal adenomas are always treated by surgically removing the tumor with either an abdominal or side (flank) incision. The other adrenal is left in, and will grow back to normal size or function. After the surgery, replacement steroid hormones are given and slowly tapered over a few months as the remaining adrenal responds to the normal ACTH production from the pituitary.

    Written by: Paul Margulies, M.D., F.A.C.P., F.A.C.E. Medical Director of NADF Clinical Associate Professor of Medicine, Cornell University Medical College and posted at http://www.medhelp.org/www/nadf4.htm

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  • What can be done for Ectopic ACTH producing tumors?

    Ectopic ACTH producing tumors are usually malignant (cancer). Removing this cancer or treating it with radiation or chemotherapy may help in improving the Cushing's Syndrome. If the tumor is benign, or it can be completely removed, surgery may be a cure. Most of the time, reduction of the cortisol production from the adrenals with medications such as metyrapone, amino-glutethimide or ketoconazole is useful while the ACTH-producing tumor is treated.

    Written by: Paul Margulies, M.D., F.A.C.P., F.A.C.E. Medical Director of NADF Clinical Associate Professor of Medicine, Cornell University Medical College and posted at http://www.medhelp.org/www/nadf4.htm

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  • Why is pituitary surgery performed rather than adrenal surgery for Cushing's disease?

    Cushing's disease is best treated with the surgical removal of the pituitary tumor, usually with a technique called transsphenoidal resection (behind the nose) by a neurosurgeon. Occasionally, the entire pituitary gland will need to be removed or injured in order to cure the Cushing's disease, leaving the person with a deficiency of ACTH and the other pituitary hormones. This can be treated by giving replacement hormones for cortisol, thyroid and gonadal (sex) hormones. Fertility can be restored with special hormonal therapies. If the pituitary tumor cannot be removed, radiation therapy to the pituitary can be used, but the improvement in the Cushing's Syndrome is much slower. Before transsphenoidal surgery became available, the surgical removal of both adrenal glands was common, but this always produced adrenal insufficiency and sometimes caused large ACTH producing pituitary tumors to grow (called Nelson's syndrome). That is why pituitary surgery rather than adrenal surgery is usually preferred for Cushing's disease.

    Written by: Paul Margulies, M.D., F.A.C.P., F.A.C.E. Medical Director of NADF Clinical Associate Professor of Medicine, Cornell University Medical College and posted at http://www.medhelp.org/www/nadf4.htm

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  • How is empty sella syndrome treated?

    Specific treatment for empty sella syndrome will be determined by your physician based on:
    • your overall health and medical history
    • extent of the disease
    • your tolerance for specific medications, procedures, or therapies
    • expectations for the course of the disease
    • your opinion or preference
    If there are no other symptoms, and if the pituitary gland is not enlarged, treatment may not be necessary for empty sella syndrome.

    For more information and support, visit the Other Endocrine Diseases Message Board. Covered on that board are other pituitary tumors such as:

    other pituitary tumors, Acromegaly, Craniopharangia, Empty Sella, Non Functioning Adenomas, Prolactinoma, Rathke's Cleft Syndrome or diseases such as Acanthis Nigricans, Addison's, Diabetes, MEN [Multiple Endocrine Neoplasia], Nelson's, Sheehan's Syndrome or Thyroid issues are discussed here.

    More information on Empty Sella
       This Topic on the Message Boards.

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  • Are there any medical treatments for ACTH producing tumors?

    Yes and no. There are medications which can reduce cortisol production by the adrenal glands, but these medications do not have any effect of the pituitary overproduction of the hormone ACTH (the pituitary hormone that stimulates the adrenal glands to make too much cortisol). Thus, medications are used to control adrenal gland cortisol overproduction, but do not treat the source of the problem - the pituitary gland. Some of the medications used include ketoconazole (Nizoral) and metyrapone (Metopirone). These medications are often used for patients who have persistent Cushing's after surgery and radiation, while waiting for the radiation to become effective. If a drug to lower cortisol is prescribed, careful monitoring is necessary to determine if the dose is effective (measure 24 hour urine cortisol level) and to make sure it does not reduce cortisol to below normal (measure morning blood cortisol level).

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