Observation of Cushing's Disease

Cushing's disease is a disorder caused by the overproduction of the "stress hormone", cortisol. The cause is a brain tumor arising from the pituitary gland. This tumor is often benign, meaning that it is non-cancerous and typically does not spread to other parts of the body.

Also referred to as a type of "pituitary adenoma", this tumor secretes excess adrenocorticotropic hormone (ACTH), which then stimulates the adrenal glands above the kidneys to produce more cortisol than the body needs. High levels of cortisol can lead to a wide range of symptoms and complications.

Cushing's disease is a rare condition, with an estimated annual diagnosis rate of approximately 10 to 15 cases per million people. It mainly affects individuals between the ages of 20 and 50 years. Notably, this endocrine disorder appears to have a higher prevalence in women, with about three times as many females being affected compared to males.

Common symptoms of Cushing's disease include weight gain, particularly in the upper body and face, thinning of the skin, easy bruising, muscle weakness, and a tendency to develop stretch marks. In this article we will discuss observation as a treatment option for patients and answer questions you may have.

There are two main objectives for Cushing's disease treatment. One is to remove the tumor itself, and the other is to improve or manage symptoms.

In most cases, surgery is the preferred treatment option for Cushing's disease. By removing the tumor, the principal cause of the hormone disorder, cortisol levels will fall back to normal, and symptoms will resolve over time.

Surgery, however, comes with the risk of damaging the normal pituitary gland. Loss of normal pituitary tissue can cause other hormone deficits and hormone supplementation may be necessary.

Other treatment options such as radiation therapy and medications may be used after surgery. These options are utilized to prevent growth of any remnant tumor and address any persistent symptoms.

The exact treatment regimen will depend on your specific case. In some cases, the tumor may simply be monitored over time through periodic imaging tests.

While "observation" is not a treatment, it is a management approach that may be favorable particularly for patients with small tumors and no symptoms. 

Observation, also known as watchful waiting, may be employed in certain cases of Cushing's disease when the condition is mild or asymptomatic. It involves closely monitoring the patient's health and hormone levels without immediate intervention or treatment.

The decision to opt for observation of a pituitary tumor is a carefully considered one. When a medical professional assesses that the tumor is small and has minimal impact on your daily life, observation can be a viable alternative to immediate treatment.

Your neurosurgeon or endocrinologist will likely establish a regular testing schedule to monitor the tumor and your condition over time, often through yearly MRI scans. If the tumor shows no significant growth and has minimal impact on your hormone levels and overall functioning, surgery may not be necessary.

This approach also may be favorable for older patients with clinically insignificant tumors that exhibit slow or halted growth over time. The decision to observe rather than pursue active treatment is typically based on the following factors:

• Mild symptoms: If the symptoms of Cushing's disease are mild or not significantly impacting the patient's quality of life, doctors may choose observation to avoid the potential risks and side effects associated with aggressive treatments.
• Small tumors: When the pituitary tumor responsible for Cushing's disease is small and not causing significant hormone overproduction, the medical team may decide to monitor its growth and the patient's condition over time before considering surgical or radiation interventions.
• High surgical risks: In some cases, the patient's overall health or other medical conditions may make surgery or radiation therapy too risky. In such situations, observation can be a suitable approach until the patient's health improves or alternative treatment options become available.
• Patient preference: Some patients may prefer to initially try conservative management before opting for more invasive treatments. They may choose observation to see if their symptoms improve or stabilize without immediate intervention.

Although observation may not seem as scary as a potential surgery, it can be stressful to think about a tumor that you are not actively treating. Remember that observation can be discontinued at any time. Communicate with your medical team about your goals and preferences.

The progression of Cushing's disease can vary widely from person to person. It depends on several factors, including the size and activity of the pituitary tumor, and the individual's overall health and response to treatment. In some cases, Cushing's disease can progress slowly over several years, with symptoms gradually becoming more noticeable over time.

The extent of weight gain can vary, depending on factors such as the severity and duration of the disease, individual metabolism, lifestyle, and other underlying health conditions. Some individuals with Cushing's disease may experience moderate weight gain, while others may gain a significant amount of weight. Weight loss can be achieved through successful treatment of Cushing's disease, most commonly through transsphenoidal surgery to remove the adenoma.

Self-care plays an essential role in managing Cushing's disease and improving overall well-being. While medical treatments are necessary, self-care practices can complement the treatment plan and help alleviate symptoms. Here are some self-care strategies for individuals with Cushing's disease:

• Manage Stress: Practice stress-reduction techniques such as meditation, deep breathing exercises, yoga, or mindfulness. Also, seek support from family, friends, or support groups.
• Healthy Diet and Exercise: Consume a balanced diet rich in fruits, vegetables, whole grains, and lean proteins. Also, engage in regular physical activity that suits your condition and capabilities.
• Adequate Sleep: Aim for consistent and sufficient sleep each night. Create a relaxing bedtime routine and ensure your sleep environment is comfortable.

• Observation can be employed when the condition is mild or asymptomatic.
• The decision to discontinue observation and undergo treatment can be made at any time.

• Endocrine Society
• Pituitary Foundation
• Urology Care Foundation
• National Adrenal Diseases Foundation