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Cancer: Rectal & Anal Message Board
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Old 09-10-2011, 05:41 PM   #1
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pmartin HB User
rectal carcinoid so many questions

I went in for my results from my colonoscopy knowing they had removed 4 polyps. When I went in the suregeon says well we didn't think we were going to find anything funny but we did. 3 of the polyps were nothing but the last one was a rectal carcinoid. All I hear is cancer. He is super non challant about the whole thing. He said it is super small only 4mm and does not want me to fret but they want to go back in and just make sure that it is all gone.
The appt. lasted all of 5 min. As soon as I got home I called hiim back saying what was it called I have to tell my husband etc. He said it is a benign rectal cardinoid tumor with no feelers. I am assuming this is good. I don't go back for the second scope unitl the 23rd of Sept. Anyone have any knowledge on this subject. I would have heard benign in the first conversation I guess he left that part out. I am only 38 and super scared.

 
Old 09-18-2011, 06:16 PM   #2
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Re: rectal carcinoid so many questions

Hi!! I was diagnosed with the identical thing as an 18yo freshman in college. It took many many tests and finally a colonoscopy to determine I had a small carcinoid in my rectum area. Your experience with your doctor sounds the same as mine. If your tumor is/was located in the rectum area, rather than intestine, appendix, stomach, etc; the likelihood of reoccurrence is very low. I am 8 years out, with 3 years of f/u colonoscopys and all clear; they now test me with a 24-hour HIAA urine test yearly. I know it is very rare for someone of your age (or mine) to be diagnosed with this, but be grateful it was found, because it is known to be a silent killer to those who are older. I hope this can give you some hope, but if you are still questioning your doctor's opinion... GET A SECOND! Dr's are as human as you and I; It took 9 mos of persistence on my mother's part for the doctor to continue testing me until they found that tumor. If she wouldn't have been my advocate, I have no idea what would have come of this... Best wishes and I hope everything goes well!

 
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Old 09-19-2011, 07:42 AM   #3
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Re: rectal carcinoid so many questions

Thank you so much for your reply. I go friday for my other scope to make sure they got all of the tumor. I am greatful that I pushed for the colonoscopy, my gp scheduled it to humour me I think. I guess my questions come from the unknown can I have more of these tumors in my body? If they come from overproducing a hormone couldn't they be else where. After the removal of all the tumor what is my next step. I guess I follow up with my gp to get other test like the urnine test and I think there is a blood test to see if your seratonin levels are high. I am a hypochodriac as it is and this has pushed me over the edge. My doctor told me to stay away from the internet (which I didn't) and now I swear I am having symptoms of carcinoid syndrome. Silly I know. I can create a stomach flu just by overthinking about it. After they found your tumor what was your next steps? Thank you so much for your input.

 
Old 09-19-2011, 05:50 PM   #4
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Re: rectal carcinoid so many questions

My heart melts hearing you... I'M THE SAME WAY!! I would recommend finding a GI doctor or some type of specialist... Again, like I said, my mom was my advocate. She's in the medical field and there are many doctors she has run into who are too "easy-going" and have missed things (ex. a girl I went to HS with was a star athlete and began having trouble breathing and he gave her an inhaler diagnosing "asthma" for the final 3 yrs of HS; she had non-hodgkin's lymphoma and a grapefruit size tumor on her lung... all he would've had to do is a freaking x-ray?!)... Octreotide scans detect carcinoids... ask about one... but don't do them too often, b/c I've heard that you should never have more than 2-3 in a lifetime b/c you body stops reacting to the nuclear injection so they are just painfully pointless. I had 2, then my dr recommended a 3rd this yr, I declined at this point but will reconsider it in the next year or two. Carcinoids are VERY slow growing, so that gave me some peace of mind. What symptoms did you have that prompted you to want a colonoscopy? I had extreme varying bouts of nausea, extreme varying sleep patterns, flushing, bowel issues, etc... I still have digestive problems which the doctors have yet to figure out...Heck, I have little faith anymore, I really have just been experimenting and researching on my own for the last 9yrs... I sure am thinking about you... please keep me updated!!

 
Old 09-19-2011, 11:39 PM   #5
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Re: rectal carcinoid so many questions

Wow it makes me feel so much better knowing someone has been through this. I went to the doctor because I had a change in bowel habits. It just felt wrong. I had changed my diet (for the better) and they thought that was the reason. Now I am freaking out because for the longest time I have had a burning sensation in my upper left abdomen and now I am thinking the worst. It takes so long to get any answers I have been dealing with the bowel changes unitl now since May. I am seeing at GI specialist so once I go in for the results I will ask what my next step should be. I also made an appt. with my gp to see if he can get the ball rolling for further testing. I have also located a doctor that specializes in carsinoid cancers. I can't believe I am haviing to discuss this it all seems so wrong. I have 4 year old twins and I keep imagiining the worst. Sorry for the ramble.

 
Old 10-13-2011, 03:24 PM   #6
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Re: rectal carcinoid so many questions

Just got my follow up results of the second biopsy and all is clear. I am so relieved. I did ask for the 24 hour urine test just to make sure all is well. My doctor now has me booked already for yearly colonoscopies which is okay with me. Just thought I would keep you up to date. Thank you for your posts.

 
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