Gastrointestinal Stromal Tumor (GIST)

[AubreyYA]

Hello, I have read some useful information here in the past from both doctors and other folks and I thought I would ask my question since it has me quite worried.  I am a male, 32 years of age, 5'8", 170 lbs, in healthy condition. I workout semi-regularly and have a mostly healthy diet.  I dont smoke, use drugs, and drink maybe a single beer a week.  July of 2003 is when the incident happened; I had a longish day and had not eaten at all, at around 5:30 pm I had a small drink (shot) of liquor (not very strong liquor).  I then went home and had what was for ME a VERY stressful incident where a dog jumped and scratched the paint from the door of my brand new car.  Then i decided to eat with a friend where we drank some red wine while waiting for food.  I ate some of his jalepeno popppers (I thought quite hot).  Finally I went home full.  Felt bloated for a while, but assumed it would dissipate.  It didn't, I woke up at 5:00 am with nausea, and felt as full as i had before.  20 hours after the meal I made myself throw up to discover some food still in my stomach, and some even undigested.  I didn't eat much for a day or two and everything seemed to just go away pretty quickly.  Still I went to my primary care phyisician asking about gastroparesis, ulcers, etc.  I had somewhat elevated liver enzymes ALT 75, and a slightly lowered white cell count.  I was not satisfied with his guess of ulcer (stress, alchol, wine, spices, empty stomach).  But the symptoms seemed not to return.  I asked then for an ultrasound (upper-right quad), he obliged me six weeks later, and they found nothing but normal images.  I then asked for a gastroenterologist to use a enteroscope to check my stomach/duodenum for ulcers, he did at 12 weeks since incident.  This is where its scary.  He found no ulcers, but he found a tumor ~2cm in diameter which he labeled a GIST in the stomach wall (into the lumen). It was not obstructing anything, he did nothing but take pictures of it and tell me that hes going to schedule me for and endoscopic ultasound of the tumor at Univ. of Virginia.  He also told me that it would NOT have caused any of my symptoms from before (so still no reason for them).  I know the dangers of this sort of tumor, and I realize that Ill get it surgically resected.  But time is of the essence here, and I am VERY much against a biopsy (needle aspiration or otherwise) because I have fears that IF its malignant, tumor seeding and/or spillage may significantly worsen my prognosis.  I want it resected and with a WIDE circumferential skirt as soon as possible.  I also know that if it turns out to be the "right" kind of tumor, Gleevec may be indicated as follow-up/adjunct therapy.  What I need now is to know how/where I can find the best center or gastroenterology clinic, surgeon etc.  Are there any well known facilities for gastro-surgery specialists?  Please, where would you go if $ were no object?  If it were you, what facility would you trust to remove this?  Thanks.

[Kevin Pho, MD]

I am not personally familiar with gastroenterologists dealing with GIST.  The first place I would start would be any major academic medical center.  

As you may have read, GISTs account for 1/3 of all stomach cancers.  Small lesions (less than 1.0 cm) with EUS findings suggestive of benignity may be followed conservatively, using a similar protocol as for esophageal leiomyomas (see above). However, some physicians will resect tumors between 0.5 and 1.0 cm in size by endoscopic snare polypectomy. Larger tumors should be surgically resected, because of the increased frequency of complications and the difficulty in excluding malignancy preoperatively.

In your case, I would suggest removal.  A good start for this would be any academic medical center in a major city.  Since I'm based in New Hampshire, I would trust the Dartmouth-Hitchcock Medical Center, or any of the major centers in Boston: Boston Medical Center, Massachusetts General Hospital or Beth Israel Deaconess Hospital.    

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[AubreyYA]

Thank you Dr.  I appreciate the information very much.  I know the the endoscopic ultrasound is to be performed withing a 2 week period at the Univ. of Virginia.  I hope they dont push for a biopsy, because my fear of cancer and the relatively poor prognosis (with this type of tumor) I may be facing is enough to want it OUT without risking spillage/seeding of any malignant cells (assuming it hasn't already).  Would you be able to clarify the pros and cons of doing a biopsy at all for a tumor this size? (2-2.5 cm).  I can't honestly think of a single reason for one considering that it will need to be removed anyway.  Also, is there a specialized sort of surgeon that I would need to search for? Im trying to do as much homework as I can of course to collect information that may be necessary later.  I didn't know if there is a speciality of surgeons that would be best for this other than of course one with a lot of experience.  I am also considering MD Anderson and Sloan-Kettering... might be premature, but I wonder if their vaunted reputation would mean anything as far as removing this tumor and testing it further (I understand these types of tumors are complicated to differentiate/classify).  Anyway, like most patients, I am scared and more than a little paranoid, so I'm trying to learn and collect as much information as I can. Do you think think the surgeon here would have any recommendations about this procedure?  I'd certainly welcome his thougts on a procedure removing a 2.5 cm tumor from my stomach.  Thank you again Drs.  I apprecaite it greatly.