Overview
Pituitary carcinoma is an extremely rare and aggressive cancer that starts in the pituitary gland, a small pea-sized gland located at the base of the brain. The pituitary gland is sometimes called the "master gland" because it produces hormones that control many important body functions, including growth, metabolism, reproduction, and stress responses. Pituitary carcinoma is different from the much more common pituitary adenomas (benign tumors) because it has the ability to spread (metastasize) to other parts of the body, such as the brain, spinal cord, liver, or lymph nodes. This spreading is actually what defines it as a carcinoma rather than a benign tumor. Symptoms depend on whether the tumor produces excess hormones (functioning tumor) or not (non-functioning tumor). Functioning pituitary carcinomas most commonly overproduce ACTH (causing Cushing's disease) or prolactin. Patients may experience headaches, vision problems, hormonal imbalances, unexplained weight changes, fatigue, and other symptoms related to hormone overproduction or the tumor pressing on nearby brain structures. Treatment typically involves surgery to remove as much of the tumor as possible, followed by radiation therapy. Chemotherapy, particularly with temozolomide, has become an important treatment option. Despite treatment, pituitary carcinoma remains very difficult to cure, and management often focuses on controlling tumor growth and managing hormone-related symptoms. Because this cancer is so rare, treatment decisions are usually made by a multidisciplinary team of specialists.
Key symptoms:
Persistent headachesVision problems, especially loss of peripheral visionUnexplained weight gain, especially in the face and trunkFatigue and weaknessIrregular or absent menstrual periods in womenDecreased sex drive or erectile dysfunction in menAbnormal breast milk production (galactorrhea)High blood pressureEasy bruising and skin changesExcessive thirst and frequent urinationMood changes, depression, or anxietyNausea and vomitingGrowth of hands and feet (if growth hormone is overproduced)Symptoms from cancer spread such as back pain or neurological problems
Clinical phenotype terms (22)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
1 eventMemorial Sloan Kettering Cancer Center — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Pituitary carcinoma.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Pituitary carcinoma.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Is my tumor producing excess hormones, and if so, which ones?,Has the cancer spread, and if so, where?,Am I a candidate for surgery, and what are the risks and benefits?,Would temozolomide chemotherapy be appropriate for my case?,What hormone replacement medications will I need, and for how long?,Are there any clinical trials I might be eligible for?,How often will I need follow-up imaging and blood tests?
Common questions about Pituitary carcinoma
What is Pituitary carcinoma?
Pituitary carcinoma is an extremely rare and aggressive cancer that starts in the pituitary gland, a small pea-sized gland located at the base of the brain. The pituitary gland is sometimes called the "master gland" because it produces hormones that control many important body functions, including growth, metabolism, reproduction, and stress responses. Pituitary carcinoma is different from the much more common pituitary adenomas (benign tumors) because it has the ability to spread (metastasize) to other parts of the body, such as the brain, spinal cord, liver, or lymph nodes. This spreading is
How is Pituitary carcinoma inherited?
Pituitary carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Pituitary carcinoma typically begin?
Typical onset of Pituitary carcinoma is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Pituitary carcinoma?
Yes — 1 recruiting clinical trial is currently listed for Pituitary carcinoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Pituitary carcinoma?
11 specialists and care centers treating Pituitary carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.