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Old 12-02-2003, 08:00 PM   #1
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Small bowel tumor

I'm not sure if this is the right place to post this, but after several tests and a year of being anemic w/unknown cause, I just found out that I have a tumor in my small intestine. I don't know too much at this point (I just found out yesterday), but they're going to remove it laparoscopically and then send it to pathology to see whether it's benign or malignant. They discovered this during the capsule endoscopy, and they can't take biopsies with that test. From the information I've found on small bowel tumors, they're somewhat rare....I was wondering if anyone here has been through this, or if they know someone who has? I'm a 27 yr female, healthy diet, exercise regularly....I really don't fit into any of the "normal" criteria for GI problems, at least from what I've seen and read about this. Anyway, any thoughts or advise would be appreciated. Thanks

 
Old 12-05-2003, 01:18 PM   #2
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Re: Small bowel tumor

I hope someone here can help me out a little...I finally got a hold of the report from the capsule endoscopy so I could read for myself exactly what the doctor saw. Does anyone know what a submucosal tumor is? I guess the part I'm confused on is what is 'submucosal'? The doctor described his findings seeing a "large, roundish, submucosal tumor in the small bowel". I've tried searching a little on this, but I'm finding more and more that these occurances in the small bowel are rare. I'm just trying to find out what I'm in for here......

 
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Old 12-05-2003, 09:13 PM   #3
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Re: Small bowel tumor

Every tumor in the body is evaluated based on several factors, leading to two different types of methodologies: staging and grading. Staging is mostly a measure of how aggressive the tumor is (size, whether it has spread to lymph nodes, and whether it has metastasized). Grading is based on microscopic features of the tumor, including how deep into the wall of the tissue the tumor has invaded. There are usually three or four layers of any given organ. From the inside of the bowel (i.e. what is in contact with food that passes through it) to the outside (what you would be looking at if you looked at someone's unopened intestine during surgery or at autopsy), the layers are as follows:

Mucosa: Innermost layer consisting of protective cells (called epithelium) - this is what is in contact with food, water, fecal matter, etc
Submucosa: Connective tissue supporting the mucosal layer
Muscularis externa: Muscular wall of the GI tract
Adventitia/serosa: Outermost layer (again, what you would be looking at if you saw somebody's bowel without opening it)

In general, GI tumors grow from inside to outside (they usually start with the mucosa and spread from there). The deeper a tumor grows, the further it is considered to have progressed. So, for example, a mucosal tumor is considered to have been caught earliest and an adventitial tumor the latest. Your tumor has progressed to the submucosa. You are correct in that small intestinal tumors are quite rare, accounting for only about 2% of all GI tumors (about 5300 cases per year in the US). Treatment and prognosis depend on staging and grading, as well as the location within the small bowel (duodenum, jejunum, or ileum) and the specific type of tumor (there are many different kinds, such as adenocarcinoma, squamous cell carcinoma, sarcoma, etc). I am afraid that I cannot tell you much more about your specific case without knowing any of this information.

If you have any more information that you can provide, or if you have any other questions about any of this, please feel free to ask.

Quote:
Originally Posted by amwood
I hope someone here can help me out a little...I finally got a hold of the report from the capsule endoscopy so I could read for myself exactly what the doctor saw. Does anyone know what a submucosal tumor is? I guess the part I'm confused on is what is 'submucosal'? The doctor described his findings seeing a "large, roundish, submucosal tumor in the small bowel". I've tried searching a little on this, but I'm finding more and more that these occurances in the small bowel are rare. I'm just trying to find out what I'm in for here......

Last edited by fudd; 12-05-2003 at 09:20 PM.

 
Old 12-06-2003, 02:02 PM   #4
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Re: Small bowel tumor

Thank you so much for all of the information - it was very helpful. I don't have any further information yet, and I'm still in the process of scheduling the surgery to have the tumor removed. It's so frustrating because after going through all of this testing (and being anemic for a year) it seems they would move a little faster on getting this taken care of. Of course, I only found out the capsule endoscopy results Monday, and I've called the hospital twice this week trying to get this moving. I'm in graduate school right now, and I'd really like to have this taken care of over my semester break. I'll be able to relax a little once I know that it's scheduled, and there's nothing I can do besides wait for the results...but until then, I'm going to keep harassing everyone at CPMC until this on the books!

You seem to know quite a bit about this....I have another question maybe you can help me with - if the tumor is benign but has spread beyond the first layer in the small intestine, would they have to do a resection of that portion of the bowel? As of right now, all I've been told is that they will be removing the tumor, but from what I've read it seems as though the bigger the tumor is, the more likely they would have to do a resection in that area? And does the fact that it's moved into the second layer of the small bowel increase the likelihood of that also? Again, thanks for your help, and I'll let you know when I have more information,
Adrienne

 
Old 12-06-2003, 03:14 PM   #5
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Re: Small bowel tumor

Quote:
Originally Posted by amwood
If the tumor is benign but has spread beyond the first layer in the small intestine, would they have to do a resection of that portion of the bowel?
What I probably should have mentioned earlier is that there is another aspect to grading that is just as important as invasiveness. A pathologist will also look very closely at what the tumor cells actually look like (in addition to how invasive they are). There is a continuum of malignancy that is as follows (in order):

Hyperplasia - Tumor cells look identical to whatever tissue they are growing in, there are just way too many of them - this is truly benign growth
Dysplasia - There are too many cells, and now they are starting to grow abnormally - it is still possible to determine what kind of tissue they are from, but they are no longer identical to normal cells. This is considered pre-cancerous in GI tumors.
Malignancy - Not only are there too many cells, they look nothing like the normal cells of that tissue. In fact, it may no longer be possible to even tell what tissue they came from.

So the answer to your question is that if the cells are highly dysplastic and have invaded the submucosa, it is possible that they may decided to play it safe and resect. If, however, the cells are simply hyperplastic, they may only need to excise the tumor itself. As you can see, it is the combination of dysplasia/invasiveness that determines malignancy. In general, as a tumor becomes very dysplastic, it stops following the rules of boundaries and starts growing where ever it wants. You are far more likely to see malignant cells growing past the mucosa than malignant cells confined to the mucosa, but anything is possible.

Quote:
Originally Posted by amwood
As of right now, all I've been told is that they will be removing the tumor, but from what I've read it seems as though the bigger the tumor is, the more likely they would have to do a resection in that area?
Again, although size is important, invasiveness and the degree of dysplasia play a somewhat larger role in determination of malignancy. Benign tumors can get pretty huge (especially in the kidneys and liver), so you can't judge based on size alone. Once a tumor is determined to be malignant, however, is when factors like size and metastases become very important in prognosis.

Quote:
Originally Posted by amwood
And does the fact that it's moved into the second layer of the small bowel increase the likelihood of that also? Again, thanks for your help, and I'll let you know when I have more information,
Adrienne
It increases the likelihood in the sense that if they found dysplastic cells with mucosal growth, they would probably be less likely to resect than if they found the same exact cells with submucosal growth. This is not to say that this is what they will do in your case if they find dysplasia - but in general, the more dysplastic/invasive a tumor is, the closer the tumor is to a cancer. For full blown malignant tumors, resection is always the rule.

The fact that they told you they will be removing the tumor (with no mention of a resection) makes me think that are pretty confident that they're dealing with a benign tumor. All tumor excisions involve biopsy before or during the surgery. After they remove it, they will send it off to pathology so that they can read it (on the spot if they biopsy it during surgery) - if it comes back malignant, you can change the surgery plans right there and then. You can sometimes get a pretty good idea idea if something is more benign or malignant by simply looking at it. Malignant tumors tend to be messier, they don't keep a shape or stay within any boundaries, whereas benign tumors stay within spatial limits - they are often very neat, rounded, and often wrapped up in a capsule, making excision very simple. In your case, I assume they've done an endoscopic biopsy if they have determined that it is submucosal? What tests or procedures have you had done so far?

Just for your knowledge, these are the most common types of benign tumors in the small intestine:

Hyperplastic polyps - mucosal growths with no malignant potential
Adenomas - sometimes become malignant, depending on whether they grow on a stalk (pedunculated) or not (sessile); can be mucosal or submucosal
Stromal tumors - grow within the muscularis mucosa
Lipomas - submucosal growth of fat tissue

As always, please feel free to ask any other questions you might have.

Last edited by fudd; 12-06-2003 at 03:51 PM.

 
Old 12-06-2003, 05:07 PM   #6
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Re: Small bowel tumor

The information I've given you has all been off of the capsule endoscopy report. I spoke briefly with my GI doctor when he told me the results and asked me where I wanted to have the surgery done at, and then he said he was going to call my primary doctor to discuss this. I spoke with my primary after she had spoken with the GI doctor, and she said that he was "going to get things going on his end", since I'll be having this done at a hospital in San Francisco.

To answer your question about the biopsy, no they haven't done a biopsy yet - they can't do anything with the capsule endoscopy other then view the results (since you swallow the camera and they have no control over it). I have had an endoscopy and colonscopy, both of which were normal - so they obviously couldn't see the tumor in my small bowel. I had been wondering how they were able to say it was a submucosal tumor without doing a biopsy....is that something they can sometimes tell by looking at it? As far as the surgery goes, I haven't spoken with anyone yet as to what exactly they'll be doing - all I've been told so far (by my primary doctor) is that they're going to remove the tumor, but she didn't say either way about a resection...I was going to save those questions for the surgeon and my GI doc. Just to give you a little background (I may have already but I'm not sure)....about a year ago on a routine blood test I found out I was significantly anemic. Since that test, I've had all of the GI tests done (the ones I mentioned above, and the small bowel series, and Meckel's scan), and I've had IV iron infusions to help my hemoglobin go up. On the results of the capsule test, the GI doctor noted that they still did not see any direct source of bleeding, so I do know that in addition to removing the tumor, they're going to look for another possible source of bleeding.

Hopefully I'll find out more next week, when I actually talk with the surgeon....again, thanks so much for the information - it's been really helpful!

 
Old 12-06-2003, 08:54 PM   #7
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Re: Small bowel tumor

The anemia is pretty common, and is usually the first indication of a tumor. Sometimes you can tell whether the tumor protrudes into the lumen of the bowel or is intramural (within the wall itself) based on an ultrasound. Other than that, most imaging aims at determining whether a mass is simply present or not. I know of no other ways besides pathological biopsy to determine the invasiveness of a tumor. Please let us know how everything goes and what your doctors tell you in the coming days.

Last edited by fudd; 12-06-2003 at 08:55 PM.

 
Old 12-08-2003, 09:20 PM   #8
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Re: Small bowel tumor

You know, I was thinking the other day - there's also a second way to interpret what you heard. It's possible that when you heard "submucosal tumor", your doctor was referring to a tumor of submucosal origin and not that had spread to the submucosa. These are usually called "mesenchymal" tumors, but it's possible that this is what he was referring to. If that is the case, it's pretty likely that you're dealing with a lipoma which, although rare, is always benign and easily excised. Just wanted to put that out there - I'm sure you'll learn more from the surgeon pretty soon.

Last edited by fudd; 12-08-2003 at 09:26 PM.

 
Old 12-09-2003, 02:04 PM   #9
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Re: Small bowel tumor

Thanks again for the info....if a tumor is of submucosal origin, can it spread to other layers or is it pretty much confined to that layer? I have an appointment with the surgeon this Friday at 1:30....I'm making a list of questions for him, and I'll be scheduling the surgery that day as well, so I'll know so much more by Friday. Is there anything that comes to mind that I should definitely ask? I know a lot of this really won't be determined until they get in there and see exactly what's going on....I'll keep you posted.
Adrienne

 
Old 12-09-2003, 03:00 PM   #10
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Re: Small bowel tumor

If a small bowel tumor is of submucosal origin, it is usually a benign tumor that does not spread. It can get pretty large, but it won't invade other layers. There are, however, sarcomas (i.e. malignant tumors not involving the mucosa) called GISTs in the small intestine and these actually are known to invade the overlying mucosa (opposite of what we've been talking about). Again, you never know what you're going to see until you get there, but it doesn't sound like this is the type of tumor they are expecting.

Other than finding out what they know (or speculate) about the tumor as far as category, stage, and grade, you should ask about recurrence. Even a benign tumor can be be a recurrent one. Also, I would ask about potential for malignant transformation. Again, even though a tumor is benign now, that does not mean it will stay benign forever.

Last edited by fudd; 12-09-2003 at 03:11 PM.

 
Old 12-13-2003, 09:02 AM   #11
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Re: Small bowel tumor

Well I met with my surgeon yesterday and I really liked him. He has a lot of experience doing laparoscopic work in the GI system, particularly in the small bowel. I didn't learn too much more about the tumor itself yesterday, and he actually had me get a CT scan after I met with him - to give him a better idea of where it's located within the small bowel, and the size, etc. But, I did get a better sense of the surgery itself and what would happen --- he said he's going to do a resection of the area the tumor is in. I originally thought he would just remove the tumor and not take out that part of my small intestine, but apparently not. He's going to be doing the procedure laparoscopically, but at some point may have to make a small incision. And, my bowels will stop working during and after this surgery, but the amount of time it takes for them to "restart" depends on how much extra work they'll have to do....he said it wouldn't be that long if they know where the tumor is and they can just go in, do the resection and get out. We'll see....

The length of time I'll be in the hospital depends on how much exploratory work he has to do - hopefully the CT scan will show where exactly this is and they won't have to work off of a "ballpark" guess based on the capsule video. I'll probably be there from 4-7 days, depending on what's done. I won't know the results of the biopsy for 2-3 days, but he said they can usually tell whether it's benign or malignant once they remove it.

I'm having the surgery on Jan. 7 - hopefully that will give me enough time to recover and start school the end of January. He said I'd probably be on some decent pain meds for about a week, and I'd be pretty wiped out for about 3 weeks (which will put me right at the beginning of school), so we'll see. I didn't want to do this any sooner since I'm in finals right now, and then right after finals are over I'm spending the week in Tahoe....I didn't want to give up my entire winter break for this! It may be about 4 weeks or so before I can get back on the treadmill again, or the crosstrainer....I'm counting down the days.....

So that's about all the info I have right now, and I'll get the results of the CT scan Monday (I had it done early evening Friday) so I'll know more then. How accurate are CT scans in picking these things up? Fudd, thanks for your help so far - it's been great. Does this sound about right to you? Is there anything I'm missing here, or should have asked? I went to the surgeon with a list of questions, and I think I covered about everything, but I've never been through this so who knows.....

Last edited by amwood; 12-13-2003 at 09:04 AM.

 
Old 12-13-2003, 09:01 PM   #12
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Re: Small bowel tumor

I just remembered one more question I had - Fudd or anyone else here, hopefully you're familiar with this....on the order for the CT scan, I noticed my surgeon wrote "GI stromal tumor"....I didn't notice this when I left his office, and only looked at the order when I was standing in line to register for the CT. He didn't mention whether or not he knew exactly what sort of tumor it is (or I don't recall him saying that). I've done a little searching online and it seems to be in line with what they found on the capsule endoscopy (as far as what they saw). Does anyone know more about this, and is this something they can generally diagnosis by the appearance of the tumor, and then just "verify" their diagnosis with a biopsy? I'm sure I'll find out more once I get the CT results on Monday....I guess I'm just a little impatient.....

 
Old 12-09-2004, 10:12 AM   #13
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Re: Small bowel tumor

Hi Amwood,
I've been anemic for a few months now and they are trying to find out why. I had a colonoscopy and an endoscopy done last week and both tests came back clear. They also took a biopsy of the small intestine when he was in there and that came back fine too. I'm going in to have an x-ray done of the small intestine to see if I have a small bowel tumor. I read your postings and first of all was wondering how you are doing now and also to ask you if you had any other symptoms besides the anemia? I'm at the point of only being able to stomach 1 meal a day. Anything more than that gives me diarrhea. I hope that you are all better now.

 
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