Garry Steinhilber's Story - age 62
Garry had 5 years of constantly worsening abdominal pain, starting at age 35, about 60 pounds of weight loss, and no sign of anything wrong in spite of having every test known to mankind. In 1985 he finally went to his family doctor without an appointment when he had another pain attack and refused to leave until something was done. The doctor had him admitted to hospital where he had an emergency bowel resection due to a complete obstruction. The obstruction turned out to be carcinoid and he had about 7 feet of intestine removed.
He was sent home 'cured' with no follow up at all.
He gradually regained some of the weight he had lost but by no means all, which was fine since he was somewhat overweight to start with. He felt fine for about 7 years, but then he gradually began to have problems when he ate. He would flush, his heart would beat hard and fast, and he would get something similar to a panic attack. These symptoms became increasingly worse, and again he started losing weight since the smallest bite to eat or sip to drink would set them off.
For the next two years he went to numerous doctors, none of whom knew anything about carcinoid, and received many useful gems of wisdom ranging from "eat an olive before meals, that will solve your problem", to "you have cancer, you'll be lucky to have another two years". This last statement was based on the report from the bowel resection, no current scans or tests of any kind whatsoever!
Needless to say, he was very depressed and didn't see the point in seeing any more doctors. It took several months to convince him otherwise, and he finally ended up with a gastrointestinal surgeon who was wonderful! He scheduled Garry for surgery since the CT scans didn't show any liver involvement and he thought they could do another bowel resection as well as remove a lung nodule that was also assumed to be carcinoid. When they opened him up however, they discovered the liver was full of carcinoid. Tiny but too numerous to remove. Garry also had a great deal of adhesions in his abdomen, so these were 'cleaned up' but nothing else was done.
After surgery he was put on Sandostatin subq by Dr. X who had done a great deal of research into carcinoid by then, and luckily Garry responded very well. He was on 500microgram 3 times a day for about 4 years and continually improved. He was put on Long Acting Release when it became available and is now taking a combination of subq and LAR. He's had some increase in symptoms and some tumour progression over the years, but an increase in octreotide has always stabilized him again.
In the meantime we have found a good oncologist (Dr. Y in Winnipeg) who actually takes the time to listen to his patients and orders all the appropriate follow up testing and also sent Garry to London for testing and a consult with our Canadian NeuroEndocrine experts there.
Our carcinoid journey began with the diagnosis in 1985 and for the next 18 years we did not meet a single other 'noid'. Things have certainly changed for the better!
November 2007 by Sylvia and Garry Steinhilber
Manitoba
Mid-Gut Carcinoid