One patient with glioblastoma still alive nine years later
by monica117 on Fri Jun 18, 2010 11:25 PM
Hi, I have had symptoms of a carcinoid tumor for the last 8 years, but all of the 24 hour 5H1AA tests and CgA tests have come back negative time and time again. My flushing gets worse each year, but I have had a problem with my blood pressure spiking when this happens. I have read a few articles that scenario is quite rare. I had a second MRI done yesterday (last one was 4 years ago) and have a colonoscopy scheduled next week. I hope something shows up so I can get it removed. This has monopolized my life for too long. Thanks for any stories you wish to share!
by Jenholm25 on Sat Jun 19, 2010 01:36 AM
Yes. A month before I had surgery to remove a 2.5 cm carcinoid from my ileum and 9 cancerous lymph nodes, BOTH my CgA levels and 5-HIAA levels were within normal limits.
I've heard of this happening to others too. There can be fluctuations of seritonin produced and expelled by these tummors. Seritonin is also not the ONLY hormone produced by carcinoids either. It's just one that can be tied to carcinoid cancer 65-75% of the time.
Keep us updated!
by monica117 on Mon Jun 28, 2010 06:55 PM
I appreciate you reponding to the question I posted here.
Well, both my repeat MRI and first time colonoscopy were fine. I was wondering -- what kind of doctor were you seeing when you had a growth removed from your ileum (is that the small intestine? Were the cancerous lymph nodes in the same place?
A friend wrote to her former husband who works in MN at a hospital and knows an endocronologist there. She sent my symptoms to her husband, and he shared them with the endocronologist. His response was
"This sounds like either carcinoid--perhaps foregut (most likely bronchial) because of the purplish hue to the flushing instead of pure red, but could be typical midgut (ileal) which is the most common and flushing is a very typical symptom. However, it often is associated with hypotension. She should get a 24-hour HIAA which should pick up either one.
The other possibility is a pheochromocytoma or paraganglioma--which is very well associated with severe headache and marked hypertension. Most times, however, it is associated with pallor rather than flushing. The same 24-hour urine collection should be checked for total metanephrines and fractionated catecholamines."
My friend wants me to keep pursuing other doctors to find out what is wrong with me, but I am finding that I must be referred by someone, and they are more inclined to do that when tests have shown something. Based on what this endocronolist thinks, I just don't know what kind of doctor I should be trying to get an appointment with. Do you?
by Jenholm25 on Tue Jun 29, 2010 02:52 AM
I just met another person whose CgA was high, but 5-HIAA was "normal". I find it ironic that mine were within "normal ranges" one month prior to taking 10 tumors out.
CgA has a tendancy to be more accurate than the 5-HIAA too.
The doctor who found it was my gastrointestinal doctor. There were 2 surgeons - one was a gastrointestinal surgeon. The other was an on oncology surgeon who specialised in liver resectioning. Looking back on it, the first surgeon didn't read up on my type of tumor. He was surprised when I came out of surgery all swollen in the face, eyes, and neck due to a hormone overload. When I woke up he asked me if i'd ever had thyroid problems. I had to TELL him that carcinoid tumors send a surge of hormones when they are aggrivated or removed. It was clear to me that he had no knowledge of that.
My GI dr had only diagnosed 2 other patients in her 20 yrs of practice. I love her dearly, but she thought the primary tumor was 1.5cm and that it hadn't spread. Everything I read said that once it's between 1 and 2 cm that it had a high percentage of spreading regionally. She wa off on the actual size too.
Anyway, yes, the ileum is the section of the small intestine that connects and empties into the large intestine. I've also had hypotension since 2004 and take Midodrin to keep my bp up. Without it I pass out. But I'm also on heart meds to keep my tachycardia arrythmia under control - which also drops the bp. There have been times the medical teams can't get a bp reading on me. The lowest reading I've even had was 84/50. It's usually 100/50 to 114/70.
I was misdiagnosed by general practioners, GI doctor, and cardiologist for 6 years. It was this same GI doctor who finally found it. I do know that there is a carcinoid cancer specialist in my state who is an endocronolis. It's Ok to:
1. Find a doctor who has worked with at least 10 or more carcinoid cancer patients (it may be hard to find)
2. Let them know what the endocronolist that you consulted with said. The goal is to determine the cause, then do what you can to fix the problem. You are looking for a doctor who can be on your team with the goal of getting you healthy and keeping you that way.
3. If they shrug off the idea that it might be carcinoid cancer, ask them to humor you and prove you wrong (if you're insistant, most drs are worried about malpractice suits, so they'll make was is considered "reasonable attempts" to show it is or isn't the condition you're specifically asking about).
Let me know how things go! Or if you have any questions.
by monica117 on Tue Jun 29, 2010 08:32 PM
Thank you so much for taking the time to write again and to share your incredible story. My CgA,chatecholamines (I'm sure I spelled that wrong), and seratonin levels have all been fine, too.
The first GI doctor I saw for the colonoscopy was a colon/rectal doctor only. I have now been referred to another GI doctor that deals with the whole stomach. I have read that carcinoids can show up on a person's appendix and liver, too, but I don't think that would be under the regular GI doctor.
Gosh, that was something about being so swollen from your surgery. Thanks for letting me know that, as with all of the reading I have done, I never had read about them releasing more hormones when aggrivated or removed.
You have low blood pressure with yours, and I have blood pressure spikes with mine. I read two different articles that casually mentioned that it was rare for bp to spike. Hopefully that does not add to the difficulty in locating it.
I live in Pennsylvania, and I have been encouraged to go to Johns Hopkins in Baltimore, becuase they are rated as the 3rd best place to go for Endocronology disorders. I am thankful that it is only a 1-1/2 hour drive from my home.
My symptoms have also been odd that they have only flared up during the cooler months the last 7 years -- I usually have no problem with it during the summer except if I get an internal chill - usually from sitting near a fan too long, and eventually getting cold from it.
I have some nodules near my thyroid, which I heard are very common. I get an ultrasound of them about every 6 months. I was told that nothing will be done with them unless they cause a problem with my thyroid, but so far my thyroid blood tests are find. Still, I wonder, because of the thyroid controlling temperature if there isn't something a little whacked out there.
by monica117 on Fri Jul 02, 2010 05:03 PM
I just thought of a few more things I forgot to ask you. What were your initial symptoms that first led you to a doctor, and did you symptoms change over the 6 years?
Also, you mentioned that your GI doctor did not find anything the first time, but did the second tiime. What tests were performed both times?
Thanks, again, for your help!!
by Jenholm25 on Wed Jul 07, 2010 06:44 PM
In 2004 I began having relentless diarrhea, flushing and fainting. The GP sent me to a cardiologist and a GI dr. I was diagnosed with a tachycardia arrythmia, low blood pressure, and IBS. i was put on heart meds which helped. And a slew of other meds for IBS - none of them helped. No one could explain the pain i ALLWAYS had right below my sternum. All of these things have remained constant since 2004.
Over the last 6 years I experienced odd things that would come and go like: not being able to regulate my body temperature/being freezing cold and not being able to get warm, not feeling hungry, not feeling "full", unexpected weight gain (even though I had always been able to regulate my weight well), extra high libido, extra low libido, night sweats (drenching), vertigo/dizziness, various abdominal pains and back aches, memory issues/forgetfulness, exhaustion with doing very little, short of breath just going up the stairs of my house... I quit going to the dr for quite a while and decided that if it didn't last more than 2 weeks or it wasn't interupting my ability to function - then it wasn't serious or important. i just got used to my body doing strange things that would come and go.
In Nov. 2008 i was hospitalized with what we thought was an intestinal blockage. My potassium levels were really low too. The surgeons were all set to do surgery, but when the CT scan came back showing no physical blockage, no one knew what to do. Then they thought it was ischemic colitis, but later determined it wasn't that either. They were able to get me "unclogged" with a colonoscopy prep and did the colonoscopy which revealed nothing. They had no idea what caused it or what was going on.
Last fall i had a friend who was in the hospital with gall stones and complications with that. Everything she described sounded so similar to my pains. By December 2009 the pain was increasing. So before my Christmas vacation I went in thinking we'd find some gall stones and schedule surgery when i got back. But, the CT scan showed nothing. My blood work showed that my pancreas enzymes were a little too high. Got the OK to go on my trip and have them checked again when i came back.
January 2010 - First i went back to get my pancreas enzyme levels checked again and that was fine, but my potassium was looking a little low again. So, they pumped me full of potassium again through an IV (which really hurts by the way), and sent me home. I started showing up in urgent care clinic about every 2 weeks with increasing middle upper abdominal pain. They worked to control the pain, but tests and scans showed nothing and they told me to go back to my GI dr. The gave me vicodin for the pain. It took car of the pain, but I couldn't function well on it at work or at home.
Feb. 2010 - I felt sick most of the time. Lost my appetite and lost 10 lbs between late Dec & mid Feb. GI dr ran tons of tests, nothing was showing up, but her instincts were telling her something was wrong. None of the medications we tried were working and I was down & out - in bed 2 to 3 days out of every week. At closer look on re-evaluating my file, she saw there was noted a "slight thickening of the terminal ilieum wall". She did another colonoscopy and biopsied the area in question just 15 months after i had a clean CT scan and a clean colonoscopy. But - that's when i was diagnosed. The biopsy came back as carcinoid cancer.
GI tests included: CT, ultrasound, x-rays, hidascan, gastric emptying test, lactose intolerance test, multiple food allergy tests, upper GI endoscopy (revealed gastritis and 3 gastric polyps - benign, and tested negative for some other diseases/conditions/bacteria)... I think that's it.
Hope this helps!
by motherdog on Sat Aug 28, 2010 03:51 PM
Wow! You just described me.
by monica117 on Sun Aug 29, 2010 08:28 PM
I would love to hear about your story, if you don't mind sharing. Thanks for responding!
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