Living with Ectopic Cushing syndrome
A hormone condition in which a tumor outside the pituitary gland makes too much ACTH, causing the body to make too much cortisol.
Understanding Ectopic Cushing syndrome
The tumor can be benign (noncancerous) or, more often, malignant (cancerous). It makes extra ACTH, which drives the body to make too much cortisol. It usually appears in adults and older adults. Symptoms can include weight gain around the belly, easy bruising, diabetes, mood changes, and menstrual changes.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weight gain around the belly
- Fat pad at the back of the neck (buffalo hump)
- Easy bruising
- Diabetes
- Missed periods and changes in sex drive
- Anxiety, mood swings, and trouble sleeping
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists, digestive system specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Cushing's Support and Research Foundation and Resolve: The National Infertility Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Digestive system specialists (gastroenterologists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Cushing's Support and Research Foundation, Resolve: The National Infertility Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Cushing's Support and Research Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is caused by too much ACTH made by a tumor outside the pituitary gland. The tumor can be benign or, more often, malignant.
Also known as: adrenocorticotropic hormone secretion syndrome; cushing syndrome due to ectopic acth secretion; ectopic acth secreting tumor; ectopic acth secreting tumour; occult ectopic acth secretion; paraneoplastic cushing syndrome
Patient organizations
- Cushing's Support and Research FoundationEctopic Cushing syndrome · United States
- Resolve: The National Infertility AssociationInfertility · United States
- Pancreatic Cancer Action NetworkPancreatic tumors · United States
- American Cancer SocietyPancreatic tumors · United States
You are more than your diagnosis
Perspectives from people navigating life with Ectopic Cushing syndrome.
Explore research for Ectopic Cushing syndrome
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