Gastrinoma with gastrin level of 5,900

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My first EGD was back in Jan. '07. The surgeons that did it are a husband and wife team that are here in our small town and hospital and we are very fortunate to have them. When all the blood work got back, the gastrin level was 5360 (norm is less that 100), so the surgeons told be we were probably looking at major surgery, but she wanted to get a CT and an octreotide scan first, Both tests were negative, so the local surgeons said we could monitor everything every three months with repeat EGD'S. As long as the place in my stomach was getting smaller and the gastrin level was coming down. In August, the place in my stomach was larger and my gastrin level had gone up to 5990 after coming down as low as 3400 during April. I was then referred to MUSC in CHarleston and my doctor there, said I would definitely have to have surgery---an exploratory lap with a Whipple, but she wanted to get more tests frst, She wanted me to have another octreotide scan which showed a small mass in my duodenum and another CT that showed a suspicious place at the connection of the duodenum join together. Plus, my fasting gastrin in Charleston had increased to 6500. My husband and I went to Charleston this past Thursday for my endoscopic ultrasound by THE BEST gastroenterologist. Well, she was unable to complete the ultrasound part of the procedure because of undigested food in my stomach, but she still said, "You don't have a gastrinoma and don't need to have surgery. How can she even make a statememnt like that when she wasn't able to perform the part of the test that would have hopefully told us exactly where the gastrinoma is. My surgeon got there at the tail end of the EGD so they were both talking to us at the same time. After the GI doc gave her opinmion that there was no gastrinoma, the surgeon said, "Well, we already know that something is showing up in the duodenum and in the stomach from the scans you had, and you still have a very high level of gastrin, so I'm not willing to say no surgery at this point. The surgeon wants to repeat the endoscopic ultrasound and a secretin level, and I still trust my surgeon's opinion more, but have any of you others, had two so conflicting opinions?

I am a Registered Nurse with 34 years experience working in the hospital,
so granted, a little medical knowledge is much worse than none at all, but my nerves are about to get the best of me.

How do other people handle this?

pepsmom · Newbie Joined: 08 Feb 2008 Posts: 1

I also have been in the search for a gastrinoma for months now. I have constant ulcers. They keep coming back and take a long time to heal. Last yr was hospitalized with 5. Finally my Dr ordered a gastrin level and it was 1500. Then did a CT scan and MRI. Next was a visit to a surgeon. The CT Scan and MRI was negative. Then an Octreo scan, still negative. Then a 64 slice CT scan, still negative. The last thing that was done was an endoscopic ultrasound, still did not see the tumors. The gastrin level has been repeated with me off all of the medicine for the ulcers and it is still elevated. I am learning that these tumors can be nasty if left in there (where ever they are). Next is an angio gram and then exploratory surgery. I also, have had the gastro doctor that did the ultrasound comment that he did not think I had a gastrinoma, but when I asked him why the gastrin level would be elevated his comment was that he did not realize that it was and that is a different story. So he then suggested I get in to see an oncologist.

I wonder if anyone else has been through anything like this in that they cant locate the tumors??
Any help would be appreciated.

Gastrinoma with gastrin level of 5,900

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