Can someone please help Me...I need answers

On April 27, 2008 I had a terrible flushing episode with elevated blood pressure and heart rate (135) and terrible pain in URQ. They treated me for allergic reaction. For the next four months I lost 18 lbs., was weak beyond belief, had migratory pain throughout abdominal area, light colored stools, extreme lightheadedness, nigh sweats and headaches.

I went to GI...had 5HIAA, ChromograninA, Serotonin, Gastrin, among other blood work...all were within normal range except a slightly elevated serotonin which they attributed to my nerves. I had a tri-phasic CT scan which showed one lesion on liver that they were unable to identify as carcinoid or hemangioma. They followed up with an MRI without contrast which showed the lesion to be a hemangioma. Then they did an Octreotide Scan which was done over 24 hours which also came up negative. Small bowel follow through showed a slightly distended loop of illeul (sp?) bowel in small intestine but unknown cause. Colonoscopy and endoscopy were negative.

It is now a year later...I am still having night sweats, sweating immediately after eating (but without the bright red face and chest), extreme discomfort in my RUQ around liver area. Pain and gas, weakness and nausea, headaches and extreme lightheadedness. Oh, and joint pain especially in knees.

Has anyone ever had negative tests and negative scans and still had crcinoid? I am terrfied that time is passing and it's there somewhere and they're not finding it!!! I am scheduled for MRI enterography tomorrow. Can anyone tell me if this is possible? Can I have carcinoid with all this negative testing? I feel so incredibly ill...I would deeply appreciate a response. Thank You in advance.

 

On 6/9/2009 bufalowgrl wrote:

On April 27, 2008 I had a terrible flushing episode with elevated blood pressure and heart rate (135) and terrible pain in URQ. They treated me for allergic reaction. For the next four months I lost 18 lbs., was weak beyond belief, had migratory pain throughout abdominal area, light colored stools, extreme lightheadedness, nigh sweats and headaches.

I went to GI...had 5HIAA, ChromograninA, Serotonin, Gastrin, among other blood work...all were within normal range except a slightly elevated serotonin which they attributed to my nerves. I had a tri-phasic CT scan which showed one lesion on liver that they were unable to identify as carcinoid or hemangioma. They followed up with an MRI without contrast which showed the lesion to be a hemangioma. Then they did an Octreotide Scan which was done over 24 hours which also came up negative. Small bowel follow through showed a slightly distended loop of illeul (sp?) bowel in small intestine but unknown cause. Colonoscopy and endoscopy were negative.

It is now a year later...I am still having night sweats, sweating immediately after eating (but without the bright red face and chest), extreme discomfort in my RUQ around liver area. Pain and gas, weakness and nausea, headaches and extreme lightheadedness. Oh, and joint pain especially in knees.

Has anyone ever had negative tests and negative scans and still had crcinoid? I am terrfied that time is passing and it's there somewhere and they're not finding it!!! I am scheduled for MRI enterography tomorrow. Can anyone tell me if this is possible? Can I have carcinoid with all this negative testing? I feel so incredibly ill...I would deeply appreciate a response. Thank You in advance.

Dear Bufalowgrl,  I would suggest that you or your Dr.s get in touch with Dr. Richard R.P. Warner and speak with him.  He is the Guru of Carcinoid, teaching @ Mt Sinai Hospital in NYC.  He may not be taking new patients (he is in his 80's) but he could direct you to one of his students who is now a Dr. and taking on new patients at the Hospital.  Call this # 212-241-4299.  This hospital is considered the hub of treating carcinoid.  I myself was diagnosed 2 years ago (age 40) with carcinoid syndrome.  I had the primary in the Cecum where the large and small intestine meet (the size of a lemon) and I had 7 lymphnodes removed as well as my gallbladder because the Sandostatin (made by Novartis) I need to take makes you create gallstones.  My liver was resected and I had 2 radio frequency ablations done to the largest of the tumors on the liver.  I still have liver mets.  I suggest that you try to eat less bananas, tree nuts, tomatoes, pineapple, and anything with caffiene(sp?) as those foods are naturally high in serotonin.  You probably know this since you had the 5HIAA Test. Also you should check with a cardiologist that is knowledgeable with carcinoid.  I see Dr. Jerome S. Zacks in NYC @ 212-289-8400 because Serotonin can scar your heart valves so it needs to be looked at and monitored on a regular basis. I Think you should look into a support group and ask many questions.  Everyone is different and the more you learn the better.  Sometimes you are telling the Dr.s things about this disease that they don't know or realize.  As far as the flushing I had it also but it stopped about 6-7 mos. before I was diagnosed. and I had lost about 25 pds. during the year before I was diagnosed in April ' 07. One other thing.  I am lactose intolerant. I don't know if that is a direct response to Carcinoid or it is a separate thing but you might try cutting out a lot of dairy or try Lactaid pills and Lactaid milk ( you can cook with the milk) when you do eat dairy, to stop the pain in your belly.  I can say I did not have any belly pain unless I had Dairy products.  Unfortunately, this disease is still in it's infancy as far as research is concerned.  But I would talk to Dr. Warner about your case just to see if he agrees that it is carcinoid.  I am sure he will be able to confirm or deny it for you.  Good luck and write often as I would like to hear how you are getting along. Check out the web site by Sunny Susan Anderson because she has a great site for research and information about carcinoid and that can aslo direct you to some other great sites to further you search for information.  Wishing you all the best.  Katheen 

Hi katheen...Thanks so much for responding. I am sorry to hear you have been though so much. I do hope you are feeling better...I'll keep you in my prayers!

You have made some good suggestions...I will contact Dr. Warner's office as soon as I get the results of yesterday's MREnterography. I will also avoid those foods you mentioned. I do have a bad caffeine habit (mostly tea throughout the day) I current ly have no appetite...I try to eat but just have no taste for anything.

Wes, thank you as well....for your response. I am most appreciative of time you both have taken to respond. I will keep posting and keep you updated. Thhanks again.

For years I had the same symptoms you are describing but also had flushing.  As the flushing worsened over the years, I sought out several different doctors including an endocrinologist, OGBYN, and dermatologist.  Each doctor ordered blood tests and never found anything out of the ordinary.  Each time I was misdiagnosed with something different - something minor.  I finally changed primary doctors and upon my first visit with him, he ordered a 24-hour urine collection.  That test is what led to the discovery of my cancer - Carcinoid.  I would suggest that if you haven't already done so, request your doctor to order a 24-hour urine collection.  This will show any raised hormone levels related to Carcinoid.  Best of luck.  I hope your symptoms are not cancer related.  -Karen

Sure sounds like carcinoid to me. But it could also be cardio. You need more testing but be aware the biomarkers they test for can be absolutely normal and you still have carciniod. I've had carcinoid a number of years but wasn't diagnosed until 06 when they (finally) found my primary which was obstructing my small bowel. That's when they found a larger tumor mass at the root of the mesentery enclosing major blood vessels. Even then I did not have any biomarkers such as serotonin, neurokinin, pancreastatin or chormogranin-A that were out of high normal range. I still don't. What's worse, they did all kinds of scans and tests, MRI, Spiral CT SPECT, endoscopy, colonoscopy, stomach-emptying, etc. Found NOTHING. When I got to the point of not being able to eat or drink for two weeks, they started seriously looking and found the primary tumor in my ileum. There's a relatively easy and benign way to find out if you are most likely to have carcinoid if your biomarkers and scans don't show anything - start taking self-injected sub-cutaneous octreotide for a month - especially when you feel a sweating episode coming on. If it helps, you probably have carcinoid. Lucy in Texas

Hello Lucy in Texas... Thanks for responding. I'm so sorry it took so long for a diagnosis with you.  I really couldn't believe what I was reading! I have had many of the same tests....Can you tell me if you had an MRI Enterography of the Small Intestine prior to diagnosis?

Can you tell me how you were finally diagnosed..obviously it was surgery. I do hope that they have been able to remove all of it or at the very least most of it.

Can you tell me if you ever had an Octreotide Scan PRIOR to diagnosis?I did and it was negative.... and also, in your blood work did you ever have a chromograninA or pancreastatin blood test done?

You mentioned a shot of sandostatin when I am symptomatic but isn't that drug extremely expensive? and I doubt my physician would even prescribe it unless I had a definitive diagnosis.

I am going to hear the results of my second round of 5HIAA and chromograninA tomorrow. I am no longer turning red with my "flushes" but I have "heat waves" where I sweat profusely throughout the day and night now. Have you ever had the sweats without the redness?

I am absolutely miserable and frightened out of my wits! I am one year and two months with these symptoms now and no closer to an explanation. I would really appreciate your being able to get back to me about the questions I have written above...Thanks so much in advance. Hope you are doing well.

 

On 6/27/2009 Karen- wrote:

For years I had the same symptoms you are describing but also had flushing.  As the flushing worsened over the years, I sought out several different doctors including an endocrinologist, OGBYN, and dermatologist.  Each doctor ordered blood tests and never found anything out of the ordinary.  Each time I was misdiagnosed with something different - something minor.  I finally changed primary doctors and upon my first visit with him, he ordered a 24-hour urine collection.  That test is what led to the discovery of my cancer - Carcinoid.  I would suggest that if you haven't already done so, request your doctor to order a 24-hour urine collection.  This will show any raised hormone levels related to Carcinoid.  Best of luck.  I hope your symptoms are not cancer related.  -Karen

 

Hi Karen...Thanks for responding. Yes, I have had a 5HIAA urine done last year and it was normal. I also had a serotonin done which was slightly elevated. I just repeated the 5HIAA last week and also a blood test called Chromogranin A which I will receive the results of probably tomorrow.

Did you ever have just sweating attacks with no redness connected to them? I have them throughout the day and night now. My spine has also begun to hurt in addition to the other symptoms which now include joint pain (especially knees) and swelling.

I am fairly certain this is not cardiac related because I had that checked by EKG with a cardiologist when my first episode happened.

I guess what I am really concerned about is that another person with carcinoid...has posted (Lucy in Texas) and she had ALL completely normal tests...that included bloodwork, urine and imaging tests (although not Octreotide Scan) and she still went undiagnosed until they went in when she had an obstruction and found the carcinoid. I'm hearing this alot and it scares me.

Did you have an Octreotide Scan or bloodwork called Chromogranin A or Pancreastatin? If so, do you mind telling me what your vaues were?

Thanks again ...in advance for responding.

 

On 6/28/2009 Lucy in Texas wrote:

Sure sounds like carcinoid to me. But it could also be cardio. You need more testing but be aware the biomarkers they test for can be absolutely normal and you still have carciniod. I've had carcinoid a number of years but wasn't diagnosed until 06 when they (finally) found my primary which was obstructing my small bowel. That's when they found a larger tumor mass at the root of the mesentery enclosing major blood vessels. Even then I did not have any biomarkers such as serotonin, neurokinin, pancreastatin or chormogranin-A that were out of high normal range. I still don't. What's worse, they did all kinds of scans and tests, MRI, Spiral CT SPECT, endoscopy, colonoscopy, stomach-emptying, etc. Found NOTHING. When I got to the point of not being able to eat or drink for two weeks, they started seriously looking and found the primary tumor in my ileum. There's a relatively easy and benign way to find out if you are most likely to have carcinoid if your biomarkers and scans don't show anything - start taking self-injected sub-cutaneous octreotide for a month - especially when you feel a sweating episode coming on. If it helps, you probably have carcinoid. Lucy in Texas

 

Sorry Lucy...I just realized that you did tell me in your post that your ChromograninA and Pancreastatin were normal. I am flabberghasted by this...because wouldn't you have a measurable amount of those substances if you were experiencing "Carcinoid Syndrome?" I know that some people (a small percentage) do not have the receptors on their tumors that would show up in an Octreotide Scan...but I thought for sure if you were in Carcinoid Syndrome that would have to be some measurable amount.

Thanks again

Thanks for keeping in touch. I will be very interested to see what you learn from your tests. To answer some of your questions: MRI Enterography (this is the pill camera?) No, I never had it. I developed a small bowel obstruction and could not eat at all, could only sip water in small amounts. Now, this had been the case for some time but it would come and go. This time it stayed for two weeks. The ER doc said, "this is a classic case of SBO and we are going to find out what's causing it." I thought maybe a kinked intestine? I was shocked to learn her radiologist had found a small tumor in my ileum. But the difference here was they were LOOKING for something. All the docs before, with few exceptions, just ran me through the usual tests - which were invariably negative. I didn't have Octreoscan until right before my surgery and there it was - tumor in the small bowel, tumor in the mesentery. I joke with my husband that they should have made an alphabetical list of all the diseases that could be causing my symptoms and the various tests to rule them in or out. When they got to "C" for carcinoid, they would still not know according to my labs because my 5-HIAA, pancreastatin, etc. all STILL test in the normal range. But they could have then ordered an Octreoscan and boom - we could have known years earlier. I had "night sweats" before an during the time I contracted "Mono" at age 43 and it wasn't from kissing anyone. It compromised my immune system and I got septic sinusitis after that. Took a couple of years to get over. Haven't had a sinus infection before or after that. Your symptoms sound like they could be neuroendocrine in origin. There's a wonderful book you can download for free or they will send you one. Neuroendocrine Tumors - A Comprehensive Guide To Diagnosis and Management. From Inter Science Institute (800) 255-2873 or www.interscienceinstitute.com My doctor, Eugene Woltering had a large role to play in this book. A revised second edition is awaited but they will be happy to send you one in paperback. Or download for free. Octreotide (the generic form of octreotide acetate - not the Sandostatin LAR, which is long-acting) is expensive but it is less expensive than the LAR. If your doctor doesn't want to prescribe it, get another doctor. It seems worth a try to see if it helps. You use only a tiny bit under the skin when the flushing starts. If it stops your symptoms, that is a pretty clear indication of neuroendocrine disease. Maybe not carcinoid. Maybe insulinoma. Or some related disorder. I don't know whether you are seeing and endocrinologist or an oncologist or just a GP. You need the diagnosis and care of a specialist. Regular Oncs and GPs just don't have the training and experience with NETs. They think it is rare (it isn't anymore.) They think it is ok to not look for tumors (wrong.) I strongly urge you to get an appointment with Eugene Woltering ASAP. If you are in NYC and have the money, Dr. Richard P. Warner is one of the most experienced diagnosticians in the country. Dr. Thomas O'Dorisio (endocrinologist) in Iowa and Dr. Aaron Vinik (endocrinologists) are all contributors to the book I mentioned and any one of them could help diagnose you. Not all NETs have somatostatin receptors, therefore they are not visible on Oscan. I believe that is mentioned in this book. You may have a pituitary problem, vipoma, any number of things but I have learned how doctors think. They run the usual tests. If these don't show anything. They try maybe one more thing and if that doesn't work - they try their best to pass you off onto someone else. Just cut to the chase and go to a specialist. Must run for now but if you have more questions, I'll do my best. If you access the ACOR site (Yahool groups) look for carcinoid, and describe your symptoms (you have to register) you will get the same stuff I just told you but Dr. Woltering does post to this list and answers questions (some) online. You have to make them short and put his name in the subject header. Best wishes, Lucy

Gosh, I wish I knew more about this cancer to give you a good answer, but from what others are saying, the symptoms can vary significantly.  Even though I was diagnosed over six months ago, there is still so little I know.  I do pray that you do not have Carcinoids and hope you find your answer so that you can stop worrying.

I just recently started having sweating attacks.  Since taking Sandostatin, I no longer have flushing but now have occasional sweats instead.  My spine has hurt for years and I wonder how much or if any of it was linked to the cancer.  Mostly, I am tired a lot.  You have to realize that about 1/3 of my liver is covered in cancer so that might be why my symptoms are different.  I'm sure that those who have not had metasisis will have different symptoms.  Your symptoms may be related to a specific area?

CT's & MRI's don't always pick up this cancer.  In my case, not even the octreotide scan has found the primary source.  The only place they have found the cancer is in my liver.  I have been through multiple tests throughout the past six months looking for the primary site, but am told it/they can be microscopic in size. 

Whatever it is that you  have, don't give up searching for the answer.  I pretty much gave up even when I didn't agree with the doctor's diagnosis.  I figured if it was life threatening, the tests would show it. I was wrong.

I'll pray for you that you find your answer and that it is good.

-Karen