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Could This Still Be Carcinoid Despite Neg Tests?

I am a 48 yr old female in desperate need of some answers. The following is a summary of what I've been experiencing. I am near the end of my rope with all of this and no closer to an answer. On April 27th of this year I began flushing in face and neck, my heartrate increased to 135, I had a pulsating/burning pain in the upper right quadrant just below ribs that radiated around to the back and into my right hip and palpitations. I was unable to eat anything without abdominal pain and burning. I have lost 14 lbs. at 5"9, I went from 134 to 120. After a brief stay in the ER, I went to see a gastro. doctor at U of P Hosp. He ran the following tests:

Abdominal Ultrasound - was unremarkable
Triple Phase CT Scan - revealed what appeared to be a hemangioma on liver (not the normal characteristics)
MRI - (without contrast) - confirmed hemangioma on liver - otherwise unremarkable
Octreotide Scan (looking for carcinoid cancer tumors) - unremarkable
Small Bowel Study - revealed transient distented ileum loop of bowel - Doctor was not concerned
MRI Brain - unremarkable
Blood studies...............all unremarkable and within normal limits

I am  now able to eat somewhat more but gain not a pound! The LRQ burning pain, dizziness and fatigue continue. Pain in my spine (especially lower back, hip and neck) have gotten worse. Headaches are excruciating. I am scheduled for a colonoscopy on Nov. 18th...

My docotor is at a loss and has said that perhaps I have too much stress and he has suggested I take Elavil (sp?)
Yes, I have stress! Who wouldn't who felt like this! I'm terrified the scans may have missed something. Does anyone have any suggestions or a similar situation out there?
3 Responses
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Avatar universal
Hello Janet,

I had posted to you some time ago in November. You were kind enough to respond to my original post. YO mentioned in your post that your surgery was scheduled for Dec. 9th and I have often wondered how you made out and how you are doing now.

I am still going through tests. I never was able to get the colonoscopy done because my father (whom I care for) was ill as well. I did manage to reschedule it for January 20th and I am going to keep this one. In the interim, they did a small bowel follow through study where it was observed that I had a mildly distended loop of bowel in the small intestine. (ilieum - sp?) They did not know the cause. My gastro still doesn't think it's carcinoid but I am still very concerned that it is because of all of read about patients that have gone undiagnosed for many years because of the lack of accuracy in scanning for this type of cancer. I'm still praying that it is not but I am still experiencing all the symptoms I described in my earlier posts.

I do hope that youcame through the surgery well and that you are feeling much better. Please drop a line and let me know how you are doing. I wish you all the best. Look forward to hearing from you.

Sincerely,
Claudia
Helpful - 0
Avatar universal
Hello Janet,

I am so glad you wrote! I regret to say that I cancelled my colonoscopy! I was feeling too ill to take that prep. I regret it now as it could have been over and done with and I may have had an answer to all my symptoms. I am going to reschedule it today.

I am soory to hear they found a carcinoid tumor in your intestines but you sound upbeat and that's great! I really need to ask you some questions if you don't  mind. I really think that there's a problem in the area where my small intestine empties into my ascending colon (on right). I think that's where they noted a distended loop of bowel. The doctor seemed to dismiss it but I feel keenly that's where the problem may exist. Is that where they found your tumor? What necessitated your having to have surgery? Have they done an octreotide scan on you to see if the carcinoid has mets? I don't have pain in the chest but just beneath my right rib and around to back. Is that where your pain is? I am worried that the lesion they found in the liver is not a hemangioma but a carcinoid. I know of a Nationally known specialist in carcinoid...very cutting edge treatment, His name is Dr. Woltering, He is in Louisiana and I would definitely consult with him if I were you. You could perhaps send him your labs and pathology and any scans you have and he would speak to you on the phone I am sure. I have his cell phone number given to me by another carcinoid patient in Pennsylvania. People travel from all over the country to see him. There is one other specialist known nationwide, his name is Dr. Warner in New York City.

What scans have you had? Have you been experiencing the diarrhea that carcinoid often produces? I have not. I have the opposite problem. Have you had the 5HIAA test or any other neuroendocrine tumor tests?

I too, have been thinking some of this is perimenopuse but I highly doubt it. If you want to send a personal message please do so. I can then send you my email address or phone number and I can give you all the carcinoid contact information for specialists if that may help you.

After receiving your post I realize that I must reschedule. Thank you for that. What other symptoms are you experiencing if I may ask? Look forward to hearing from you.
                                                 Claudia
Helpful - 0
691001 tn?1227458552
I was very interested in your symptoms and comments.  I'm so thankful you have had your colonoscopy. I look forward to hearing the results.  I had a colonoscopy as a checkup.  I was having some of the same symptoms but I thought it was all related to menopause or adrenal fatigue.  I've been battling with these issues for some time and I am proactive using nutrition and supplements.  When they did the colonoscopy they found a carcinoid tumor, a cyst on my ovary, and gallstones.  I'm scheduled for surgery on Dec. 9 to remove the part of the small intestine with the tumor, the ovaries, gall bladder and appendix.  Did your physician check the opening of the small intestine?  That's where my tumor was hiding.  I do relate to the flushing in the face.  I do not turn red or puple.  I just feel it.  I've always wondered what it was. I've had a lot of fatigue and pain in the abdomen.  I also had a gallstone attach that brought pain to my chest and back. This was due to the gall stones.  Keep me posted on the latest.  I totally understand the frustation.  I'm now taking proactive thinking preparing for major surgery and what to do for a good recovery.  

Take care!

Janet
Helpful - 0
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