Polyps/tumors Of Small Intestine

[debmidge]

Hi All

I am submitting this as a check to see the response to "has anyone been diagnosed with polyps of small intestine or tumor (adenocarcinoma) of small intestine, as we are told is at a higher incidence than the general population?"

And, if yes, what was the outcome?; what is/was your treatment plan? What were your symptoms before diagnosis? How are you feeling now after treatment?

I'd rather not go into the reason why I wanted to know...let's just say that I have a feeling that my husband's latest testing may show this as what is going on and I want to be prepared.

Thank you very much for any input you can give me.

Deb

[Canadian Karen]

Hi Deb,

Don't know too much about it but I do know that polyps are quite common. I have had a few removed myself with my first colonoscopy. My supervisor at work, who had a colonoscopy a few months ago, had several removed. And she doesn't even have any bowel problems, this was just a "preventative maintenance" kinda colonoscopy.....

Keep us updated thought on any answers you get back from your hubby's dr....

Have a great day!

Karen

[kabowman]

Ditto...I had several removed a few years ago (at age 35). My dad has had some removed and he has no problems, unlike me. My before and after was the same...Kate

[dbuhl79]

My father and uncle have had these removed.They have no bowel issues, but this was just a routine colonoscopy as one reaches a certain age. The only indication I've understood, is that these polyps, require one to have a yearly colonoscopy to check for additional ones and monitor the situation. To keep on the top of possibly developing more complicated issues later (i.e. cancer). Its like women and their yearly mammogram.

Granted your husband's issue may be slightly different as I assume he has celiac disease. I would guess they'd remove any of the polyps found etc and keep an eye on him and have him come back yearly. (Based on what they find of course..) Sorry I don't have any more definite responses, hope this helps put your mind at ease a little.

[llj012564]

My Grandfather died from colon cancer , my father had had polyps removed , and one of my brothers has had them removed, both did not show cancer. My other siblings we all tested as was I ( the only one with confirmed celiac disease ) and none of us had any polyps. They tend to run in families. As someone with celiac disease we do have a higher risk of developing them but early detection of polyps can help in prevention of colon cancer so I make sure to go for my exams

[strack2004]

Do colonoscopies examine the small intestine? I though this test was only for the large bowel. My husband died of carcinoid cancer which usually begins in the small intestine and travels to the liver. In 1979 liver transplants were not done as far as I know. His cancer was too far advanced anyway by the time it was diagnosed. With treatment some people live reasonably normal lives for 12-20 years. My husband had terrible diarrhea and flushing over his whole body. These were the principal symptoms. Doctors accused him of drinking because his nose was so red. I knew he wasn't drinking, but they didn't come up with the correct diagnosis until one morning he asked me if I had a hard place under my right ribs. That was tumors that had spread to his liver. This disease is very rare, but if the symptoms are similar to these, it would be good to mention this to the doctors. Perhaps now doctors are more aware of this disease. Ruth

[debmidge]

yes, my husband has celiac (misdiagnosed for 27 years) and I am specifically looking for info about malignant polyps as they relate to the small intestine.

Strack: was your husband celiac?

The endoscopy does the upper or small intestine.

Thanks for any info anyone can give me.

deb

[stef-the-kicking-cuty]

My grandmother also died of colon cancer and some other cancers and my mother just mentioned couple of weeks ago, that she, once again, has had some polyps removed. She almost has all the symptoms i have. I'm pretty sure, she has celiacl, too. But you know, some parents always know everything better. She ignores my suggestions and doesn't get any test to rule celiac out. Oh well...

Stef

[strack2004]

Debmidge, I don't know if my husband was celiac. I rather doubt it since until the carcinoid symptoms started he always had normal bowel function. I envied him!

The diarrhea that came when the carcinoid cancer started was from , I think it was hormones, that were given off by the tumors. They also affected his heart. It took several years from the start of symptoms until he was finally diagnosed. After diagnosis he only lived 2 more years. Treatment at that time was limited to palliative measures to somewhat control the flushing and the diarrhea. There may be much more out there now. Strack

[Squishyleo]

My brother has Celiac and just had surgery for Carcinoid tumor in small intestine. It has spread to the lymph nodes and liver. My mother died from the same thing. I don’t know if she had Celiac but I suspect it. I also have Celiac, as does my sister, so I am looking for the best way to screen for these tumors to catch them early. I’ve heard of a blood test and a 24 hour urine test, but not sure how effective they are. 

[cyclinglady]

16 hours ago, Squishyleo said:

My brother has Celiac and just had surgery for Carcinoid tumor in small intestine. It has spread to the lymph nodes and liver. My mother died from the same thing. I don’t know if she had Celiac but I suspect it. I also have Celiac, as does my sister, so I am looking for the best way to screen for these tumors to catch them early. I’ve heard of a blood test and a 24 hour urine test, but not sure how effective they are. 

I am so sorry about your brother and I wish him well.  Have you all been diagnosed recently or as children?