Stu Chalmers Carcinoid Story

Below is more than you ever wanted to know. But it might be helpful to those who are searching and want to see one person's journey. I guess that we all need to realize that each person's journey can be considerably different.

1997 - Lots of abdominal pain in area of liver. I began to be uncomfortable sleeping on my back and right side occasionally. This went on for about 6 months gradually getting worse. I decided to see an internist, he began doing some diagnostic tests such as ultrasound, and CT scans etc. No conclusions except for "hemangioma on liver."

The pain got worse as time marched on the internist did upper/lower GI series, nothing. Colonoscopy was asked for, but the Dr. who did it decided that I had IBS before he even looked, “It will be a problem but you will not die from IBS.”

1999 - Flushed but did not associate it with anything and also had several episodes of diarrhea. I did not connect this to liver area pain. In March I decided to see a new internist who saw a spot on the CT scan and referred me to a surgeon to do another colonoscopy. The CT scan and colonoscopy showed a tumor near the ileocecal valve. When I came to, all family and friends around were crying about the cancer. Surgeon said as long as you are cleaned out, let’s resect the tumor. I said okay and 8 inches of small and large bowel were removed. A biopsy of resected tumor and “hemangiomas” showed carcinoid and also showed that there were hundreds of sesame seed sized tumors all over the mesentery.

After surgery, my surgeon referred me to an oncologist who said that in his 30 years of practice I was his second patient. I asked him if he would help me find a specialist. I knew of several people who had cancer from all over the US and spoke very highly of MD Anderson in Houston. I researched the Carcinoid Cancer website and Susan Anderson's website. Even though they did not have much to say about MD Anderson, I felt that was a good place to go due to two reasons. First, Houston is only 3 hours away by car and secondly, they claimed to have specialists in Carcinoid. I went to MD Anderson and saw Dr. Ajani. The process was not all that pleasurable. I was told that I needed to be there for at least a week. What they did was duplicate what my local oncologist had done with blood work, 5HIAA and CT scans. This happened on the first day. The rest of the time was to be spent waiting for Dr. Ajani to get the results and then have a consultation with me. We decided to return to Austin. The next week we were called to have a consultation with Dr. Ajani. The appointment was for 11:00 in the morning. I did not actually see him until 6:00 PM that day and the communication about when I would actually see him was basically non-existent. When I was finally called into his office I was talked to by a nurse around 3:30. Then one of the residents came in about an hour later and asked me all sorts of questions. Around 5:00 I heard Dr. Ajani talk to the resident about me outside of the consultation room. The conversation was something like “If he had not researched the information on the web he probably would not have all of these questions…” Dr. Ajani finally talked to me for about 15 minutes. He discussed the data from the tests said “wait and see, you will be okay but in 5 years you will have problems.” To me the lack of bedside manner and the wait and see attitude was enough to indicate that MD Anderson was not the place for me. Overall I felt like I had just been passed through a “cancer factory.” I ditched Ajani and started to research who the real specialists were. The list came down to about 7-8 doctors. I checked that list against location and whether or not the Doctor was in my insurance company’s network. My final decision was to go and consult with Dr. Pommier in Portland, OR.

My parents and my sister and one of my brothers live in Portland. I asked my sister to call Dr. Pommier. She did and he spent about 45 minutes on the phone with her. I called him up a week or so later and he spent another hour on the phone with me.

Continued...