Frequently Asked Questions - Specific Tumor Locations
Are you assuming that the hot spot in your RLQ on the OctreoScan is a primary carcinoid in the appendix, which is the origin of the small, presumably metastatic lesion, in the liver ? Very unlikely. More likely a carcinoid originates in the terminal ileum (which is so close to the appendix that the scan cannot differentiate between the two). Furthermore, appendiceal carcinoid only rarely spreads so far as the liver while carcinoids of the terminal ileum much more frequently do so. But if neither was seen as a mass on the CT scan or on colonoscopy or small intestine barium X-ray series (was this done?), they would be too small for, and it would be too dangerous, to do a needle biopsy. In short, needle biopsy of the liver is easier and safer.
The word adrenal refers to the adrenal glands. There are two, one on top of each kidney. Neoplasm means new growth. This means a new tumor. There are two categories of neoplasms, benign and malignant, the latter means cancer. Therefore, adrenal neoplasms are tumorous growths arising from the adrenal glands and can be either benign or malignant (cancerous). Furthermore, the adrenal glands are endocrine glands and make various types of hormones essential for the body, such as cortisone, adrenaline, and others. Each of these comes from separate and different types of cells in the adrenal gland and each type of cell can give rise to a separate and distinct type of neoplasm. There is no one treatment for all of these except for their surgical removal, but they often also require additional treatment with either/or radiation, chemotherapy, hormones and other medications, particularly if they are of the malignant variety and have spread.
Angioedema (the rapid swelling of the dermis, subcutaneous tissue, mucosa and submucosal tissues, most often around the lips and eyes) is extremely rare in carcinoid disease but can occur with some foregut carcinoids.
The term benign bronchial carcinoid is a misnomer. These tumors all have malignant potential but are usually very slow growing, hence the misuse of the adjective benign. Whether a lobectomy is required or bronchoscopic destruction of the tumor or some lesser type of surgery depends on the size, precise location and other features of any given tumor. These are rare tumors and unless you are at a large major medical center, your doctor probably has limited experience with this condition. A second opinion is advised but will only be as good as the experience of your consultant. Be CERTAIN to see one who is a known expert in this condition. Although it depends upon the specific case, in general most people who have lung surgery for this condition do well thereafter.
Carcinoid is found coincidentally in approximately 1 of every 200 appendixes removed. Its importance depends on its size and also whether its growth is limited to just the lining of the appendix. Most of them are tiny and just a harmless curiosity. Those few which are larger or have invaded into or through the wall of the appendix require a second, more extensive, operation to thoroughly clean out the area to which the appendix was attached. These few patients will require periodic X-ray and blood tests in the future years to watch for recurrence or spread.
Carcinoid syndrome almost never comes from appendiceal carcinoids and the 1 or 2 cases reported required extensive and obvious metastases to cause the syndrome. Usually carcinoids of the appendix are coincidental findings and have not spread until greater than 2 cm in diameter. However, even with a small one (under 2 cm) it is important to know that the tumor has not gone through the full thickness of the appendix wall and does not show any microscopic invasion of lymph nodes and blood vessels. If all these criteria are okay, then you are cured and no further testing is required.
Serotonin and other tumor products in the blood cause overgrowth of fibrous tissue on the heart valve in an unknown way. Treatment consists of neutralizing vasoactive tumor products by injection of octreotide (Sandostatin) and, when very advanced and severe, replacing the valves via heart surgery.
Carcinoid Cancer Foundation
333 Mamaroneck Avenue #492
White Plains, NY 10605