Mary was diagnosed in 1991 at age 63. Here is her story:

I had unusually sharp pains in my lower abdomen and I sought medical care at the emergency room of a local hospital. A sonogram taken a few days later showed lesions in my liver that were "indicative of metastatic malignancy"; however, the doctors said that this could not have caused the pains that I had experienced. [The cause of the pain has never been determined.]

Tissue taken during a liver biopsy was sent to many pathologists in the Metropolitan Washington area after the initial pathologist was uncertain as to a diagnosis. Finally, one pathologist suggested that it might be a carcinoid tumor.

Subsequent tests, including blood marker, 24-hour urine, upper-gastrointestinal series/small bowel follow through, colonoscopy, barium enema, and CT scans, were negative for cancer. This was a good finding since it indicated that the cancer had not spread to other areas in my body; however, we still had not found the primary site of the cancer.

The question was whether to just "watch-and-wait" or do aggressive exploratory surgery. My oncologist favored an aggressive stance and I agreed.

During surgery, the carcinoid tumors were removed from the liver (inter-operative sonogram was used to pinpoint the location of the tumors in the liver during surgery). And my surgeon found a tumor that was half the size of the fingernail on his littlest finger in my small bowel (the surgeon had found the cancer by palpating my bowel with his fingers). The tumor was removed (along with 13 cm of small bowel) and a resection was done.

The pathology report indicated that one of the six lymph nodes removed showed cancer.

No post-surgical chemotherapy or radiation was advised because at that time all available treatments would have killed the healthy cells before they had killed the slow-growing cancer. My surgeon said that he hoped that my body’s immune system would kick in and take care of any remaining cancerous cells.

Since my operation, all follow-up tests have been negative for cancer (but remember that prior to surgery, all tests had been negative also).

My doctors were very encouraging and my health was stable, so I have a positive attitude, and with tremendous family support, I am enjoying being a cancer survivor.

I have joined CACS to tell my story and learn from members of the group about all the things that I should be aware of, including carcinoid syndrome and the progress being made in the treatment of carcinoids. CACS has been very supportive and I hope that I can be of support to the members of the group as well.