Observation of Acromegaly

Acromegaly is a rare hormonal disorder characterized by the excessive secretion of growth hormone by the pituitary gland after the completion of body growth. In more than 90% of cases, this overproduction of growth hormone is triggered by a benign tumor (called an adenoma) in the pituitary gland. 

In people with acromegaly, this excess level of growth hormone then stimulates the liver to produce another hormone, insulin-like growth factor 1 (IGF-1), which is closely associated with the development of acromegaly symptoms.

The symptoms of acromegaly can vary and typically develop slowly over time. Although the primary treatment involves surgery, it is important to understand the role of observation as a potential management plan. Educating yourself about this approach can help you make informed decisions about your treatment.

Acromegaly can be treated through various methods, including surgery, radiation therapy, and medication. The primary and most preferred treatment method is transsphenoidal surgery, a minimally invasive procedure in which elongated instruments are inserted through the nose and the sphenoid sinus (“transsphenoidal”) and into the pituitary gland to reach and remove the tumor.

Transsphenoidal surgery is a frequently performed surgical technique and is widely preferred for treating this condition because it offers the most direct pathway for reaching the pituitary gland, which is located behind the nasal cavity. This surgery has reported success rates of approximately 70% to 80% and is considered the first-line and most effective treatment.

In cases where complete tumor removal is not possible, the tumor reappears, or the surgery would pose significant risks to the patient, alternative treatments such as radiation therapy or medications might be recommended instead.

Radiation therapy for acromegaly often involves stereotactic radiosurgery, which uses concentrated radiation beams to shrink the pituitary tumor and inhibit its growth. This can help to stabilize or decrease tumor size and normalize growth hormone levels over time.

Medications can also be prescribed to manage symptoms. Somatostatin analogs (such as octreotide and lanreotide) can be used to lower growth hormone levels. Octreotide and lanreotide are commonly administered through injections, which can be given either subcutaneously (in the fatty tissue just beneath the skin) or intramuscularly (in the muscle).

Dopamine agonists (such as cabergoline and bromocriptine) can also be prescribed to regulate hormone production. Growth hormone antagonists, such as pegvisomant, can be used to block the effects of growth hormone.

While these treatment options often provide relief of some symptoms such as fatigue, headache, and joint pain, changes in appearance can persist even after long-term cure. This can cause social anxiety and a feeling that the treatments did not make a difference.

Treatment, however, does prevent acromegaly symptoms from worsening, and causing other serious problems such as heart failure, diabetes, sleep apnea, and vision problems.

While getting rid of acromegaly may seem daunting, it is important to approach it step by step and maintain open communication with your medical team to establish clear expectations regarding your treatment plan

Acromegaly is generally a slow-progressing condition, but the rate of progression can vary widely among individuals. Symptoms often develop over the course of several years or even decades.

Acromegaly often poses a diagnostic challenge, because it can take approximately 5 to 10 years from the onset of symptoms for the condition to be diagnosed properly.

The prognosis for people with acromegaly is closely tied to the effectiveness of treatment. Without proper intervention, the condition can give rise to significant health complications and potentially lead to premature death.

However, successful treatment often results in symptom improvement or complete resolution. With appropriate management, life expectancy can be restored to a normal level, allowing the patient to lead a healthier and longer life.

The decision to recommend observation as a treatment approach for acromegaly depends on several factors, including the patient’s symptoms, age and general condition of health, tumor type, and personal preference.

• Mild symptoms—If the symptoms of acromegaly are mild and not significantly affecting the patient's quality of life, observation might be recommended. This approach involves regular monitoring of hormone levels, tumor size, and symptoms to detect any changes or progression of the condition.
• Older age and/or frailty—Elderly patients or those with significant comorbidities might not be suitable candidates for aggressive treatment options such as surgery or medications. In such situations, observation with regular monitoring could be the preferred approach to managing the condition while considering the patient's overall health.
• Small or nonfunctioning tumor—Acromegaly is often caused by a pituitary tumor. If the tumor is small and does not cause significant hormonal imbalances or symptoms, observation might be chosen. Regular monitoring through imaging studies and hormone level measurements will help ensure that the tumor remains stable and does not grow.
• Patient preference—The patient’s own needs and input play important roles in the treatment decision-making process. A patient’s strong desire for observation rather than immediate intervention will be taken into consideration. However, the potential risks and benefits of observation versus active treatment must be discussed thoroughly for an informed decision to be made.

There are risks and benefits to any treatment approach, including a "watchful waiting" strategy.

• Progression—Acromegaly is a progressive condition, and without active intervention, the excess growth hormone can continue to cause tissue overgrowth and lead to further complications over time.
• Decreased quality of life—The symptoms of acromegaly, such as enlarged hands and feet, facial changes, joint pain, and other associated problems, can significantly affect a person's quality of life. Choosing observation might mean living with these symptoms without relief or improvement.
• Stressful follow-up appointments—Follow-up appointments for patients with acromegaly can often be accompanied by stress and anxiety, as the person eagerly awaits the results of the latest imaging tests to determine if there has been any progression of the condition.

• Avoiding treatment side effects—Active treatments for acromegaly, such as surgery, radiation therapy, or medications, can have potential side effects. Opting for observation eliminates the risks and complications associated with treatment.
• Individual preferences—Observation could be a preferred choice for anyone who is not experiencing significant symptoms or for those who are hesitant about undergoing immediate treatment. It allows the patient to actively participate in the decision-making process and have more control over their health care.

• Observation can be considered when the symptoms of acromegaly are mild and not significantly affecting the patient's quality of life.
• Elderly or frail patients who are not suitable candidates for more aggressive treatment options might be recommended to undergo observation with regular monitoring.
• Observation can be chosen for patients with a small or nonfunctioning tumor that is not causing significant hormonal imbalances or symptoms.
• If a patient expresses a strong desire for observation rather than immediate intervention, that preference will be taken into consideration, while ensuring that the risks and benefits are thoroughly understood.

• Pituitary Network Association: Acromegaly
• The Pituitary Foundation [UK]: Acromegaly
• National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): Acromegaly
• National Health Service (NHS) [UK]: Acromegaly