Researchers still found 'excellent' survival rates for both primary, secondary disease
by charskamp on Mon Feb 07, 2011 02:47 AM
I am 51 yrs. old and recently was having high heart rate problems. After having many test they did a 24 hr urine test that they told me could show a reason that might cause my high heart rate and b/pressure. My doctor told me that the doctor came back postive and that a cell was found. I was sent to a endro. Dr who then ran a test for Chromogranin A and it came back high at 180 and the urine test came back positive again. All I have been told is that this test tells them that their is a tumor in my body. It has been two weeks and they want to do another blood test. Then they say they will tell me what the game plan is from there. I am very confused and scared. I don't understand if this means that I have cancer or a tumor or multiple tumors. I live in a small community and wonder if I should maybe go seek medical information at a larger city. I am not sure what all this means, if anyone could help explain it to me I would really appreciate it. Thank You
by ccmckenna on Thu Feb 10, 2011 05:48 AM
I am a 63 y/o male with neuroendocrine carcinoid (stage 4) tumors.
My Chromogranin A is about 250, but I have heard of folks (I think on this website) with levels around 1000.
My understanding (which could be off the mark) is that the Chromogranin A levels are only one measure and do not necessarily mean anything dire is going on. While it is linked with tumor growth, does anyone out there know if that would also apply to benign tumors?
I imagine your MD's are still in the dark as to just what it means and want to get a little more information before they get all excited about what the problem (if any) might be and what to do about it.
Sounds like a reasonable approach to me.
by monica117 on Tue Feb 15, 2011 04:53 AM
Hi, I will share what I know, and I have learned this from doing a lot of internet researches on carcinoid tumors, pheochromocytoma and endocrine tumors because I believe I have one of these tumors, but have not had the blood or urine tests confirming this, as you may have with your results.
These tumors secrete hormones, and when they do, you can have blood pressure spiking,facial flushing, heart palpatations and sometimes an urgent heartbeat like I have. However, you may experience many other symptoms, too, and that's why it will be helpful for you to read as much as you can on these tumors so you can recognize more of your symptoms that you may not have realized were connected.
I believe that once enough tests have been run, and they have come back high repeatedly, you will have some kind of scan done (some that I have read about are called MIBG and Octreoscan). I know that with the Octreoscan that something is injected into you prior to the scan, and this is supposed to help "light up" the tumors when you are scanned.
I have also read that these tumors can be both cancerous or benign when they are secreting the hormones.
I wish something would show up on a test for me as it has been almost 9 years that I have been trying to get diagnosed. I'm sure this is scary for you, since it is all new, but hopefully you will get some answers and a treatment plan, soon, so you will be rid of your symptoms. I'm not sure where you live, but I have read that the Mayo Clinic in MN is rated #1 in Endocrinology, and Johns Hopkins in MD is rated #3. I am seeing a doctor at Johns Hopkins now.
Please post more updates as you progress with this so that other people can offer their help and experience.
by Katsen57 on Sun Feb 27, 2011 02:43 AM
Dear charskamp, It is important to go to Dr.s that know Carcinoid Cancer. If you are experiencing rapid heartbeat, wheezing, diarreah, and/or flushing you may have Carcinoid a member of the Neuroendocrine Tumor Family. Those are the Common symptoms. When I had blood in my stool I was sent for a colonoscopy. The Dr found a tumor the size of a lemon in my Cecum. Lucky for me the biopsy was DX properly and He directed me to Dr. Richard R. P. Warner, the "GURU" of Carcinoid. (I live 35 miles away) He has been studying and treating carcinoid since the Korean War. He now teaches and consults patients and has a team of Dr.s @ Mount Sinai Hospital in NYC. This is where I went for treatment. I had the 5-HIAA 24-hr Urine test, MRI, and Octreotide Scan-this scan is where you are injected with radioactive isotopes and are given a CT scan over a period of 3 days. the scan is only about 20 min. at a time. Blood tests are common place for me now. If infact you do have Carcinod Cancer even without the symptoms I would inquire about Sandostatin (made by Novartis). It not only supresses the large amount of Seritonin and other hormones these tumors release that causes the symptoms (which can also scar your heart valves) but it also has been proven to reduce tumor growth. Which in my case is thought to effect my Liver Mets. I know some patients that have constant flushing and their faces are beet red. Some patients are DX at first with Rosecea. It is important to go to a Cardiologist that is thorough and knows Carcinoid Very well. I go to Dr. Jerome Zacks in NYC. He is a colligue of Dr. Warners'. I was DX in April of '07 and had my "debulking" Surgery at Mount Sinai Hopsital in NYC June 12, '07. It was very surreal for me. I didn't have any pain but I lost a lot of weight due to the big "D". Then the Bloody Stool. There are a few Dr.s in other parts of the USA that treat Carcinoid also. Kenner, Louisianna has a big Carcinoid treatment Hospital. Mayo Clinic in mid-west. Please Note: Carcinoid patients should avoid Epinephrine. Even at your dentist office ask for the non-epinephrine version of novicane. If you have any kind of surgery or would be sedated for something make sure there is a Sandostatin drip dring the procedure. Epinephrine can cause "Carcinoid Crisis" which causes your BP to increase or decrease very rapidly and can be deadly. The Sando will help your body regulate the effect. For more info please look at Carcinoid Cancer Foundation .com website. It has a wealth of information. Also it can direct you to a support group which in my opinion is a great way to get to know others like yourself and their caregivers. When you go to meet a DR bring another person with you and a notepad/pen. Sometimes when you are going through such a traumatic situation you forget half of what you are told. Also ask many questions and ask them again and again untill you get a clear answer. You are your best advocate and you know how you are feeling and what you are going through. You must stand up for yourself and don't do anything you are not in agreement with. Get a second opinion if you want. It drives me cazy when I hear and read stories that people are so worried about how their Dr. will respond to getting a second opinion. That they don't want to anger their Dr. But arent they there to help you? So Why is it so terrible to look out for yourself. You should hope they would want to learn more about treating this disease and you, properly. I still have liver mets but for now I get 60mg injections of Sandostatin LAR in the tuckuss every 28 days. along with blood tests. It has become more of a chronic disease (knock wood) for me now and can do most activities I did before the DX but I do have limitations. I get tired more easily but with the right care and monitoring by my oncologist I feel pretty good. Try to eat a good plant based diet and keep a journal about what you experience every day even the minute things and dscuss them with your Dr.s when you see them. It may help mark a trend with certain symptoms you may have overlooked or not notice before unless you write it down. Certain foods may affect you differently.
I wish you all the best! Katsen57
by santaana27 on Thu Mar 03, 2011 06:08 PM
On Feb 07, 2011 2:47 AM charskamp wrote: I am 51 yrs. old and recently was having high heart rate problems. After having many test they did a 24 hr urine test that they told me could show a reason that might cause my high heart rate and b/pressure. My doctor told me that the doctor came back postive and that a cell was found. I was sent to a endro. Dr who then ran a test for Chromogranin A and it came back high at 180 and the urine test came back positive again. All I have been told is that this test tells them that their is a tumor in my body. It has been two weeks and they want to do another blood test. Then they say they will tell me what the game plan is from there. I am very confused and scared. I don't understand if this means that I have cancer or a tumor or multiple tumors. I live in a small community and wonder if I should maybe go seek medical information at a larger city. I am not sure what all this means, if anyone could help explain it to me I would really appreciate it. Thank You
On Feb 07, 2011 2:47 AM charskamp wrote:
Here is a short write up on Chrgm A and, the values and % of accuracy. Remember, NOTHING IS 100% ACCURATE AND as noted in prior responses, not everything can be read into one reading.
Chrgma A has been noted the "gold standard blood markers" for NET's, however, there are some caveats:
The test is not 100% accurate. Actually, the study noted about 77% accuracy.
One thing regarding the test, although there is a range (normally <50), the most important indicators are 1(how does it read in your body 2) how it tracks.
For example, you levels could be normally at 180's...I have heard from my Md in Europe that works in a large center he has patients with readings of 30,000!!! My readings have been in the 100 range and I have mets in my liver and lymph nodes, bones, and belly. My reading was ~50 prior when my tumor burden was 5x the amount I have today (after PRRT). The reason was twofold 1) who knows 2) I was taking sandostatin lAR30 prior.
Net, it is frustrating because you are undergoing a very expensive tumor marker test (*the cost for 4 markers in one hospital was $11,000 USD btw...BLOOD TEST, 4 vials, 1 new car), and still they can't completely tell you what is going on.
However, noting you have correlated additional symptoms (HPM and HPB), this is something you will need to unfortunately start going through a battery of tests for to understand the underlying cause, if any, for the relatively mild increase (I assume <50)?). The most likely scenario down the road is they will consider imaging you to see if they can see anything. That in turn helps to narrow the issues down, esp. if you undergo a Ct, endo, colon, and perhaps Oscan. This would be serious and you would have to talk to your Md about it as to what is plan.
One thing that you don’t want is to have an Md "write it off" to something general and let you go on your way. It’s been noted in some rare cancers, misdiagnosis is the greatest issue with disease management.
I would recommend you research this in the web a bit and come into the next appointment with some pointed questions, and expectations on how to clearly define if this reading is a "variance", even with your symptoms, or due to something more worrisome, and how to identify it?
Good luck and God Bless.
by Deg3g on Sun Mar 06, 2011 03:29 AM
OMG I am so glad I read your reply to this person!!! I went to the dentist for a filling this week. My heart felt like it was beating right out of my chest! I was actually starting to freak out a bit... but was afraid the dentist would think I was out of my mind. LOL So I didn't tell him what I was going through. I'll be the first to admit, I am not a fan of dentists... but that hasn't happened before. I didn't flush, but it definately was strange... I think you might have something there.
by Katsen57 on Fri Mar 11, 2011 06:10 AM
Dear Deg3g, You are lucky it didnt turn too ugly. It is important to notify the dentist of your situation and have a thorough discussion about Carcinoid with him and his assistant. He does have some medical knowledge so he should understand what you mean. Try bringing info about Carcinoid to him and make sure he understands what it is. I am sure he doesnt want a patient passing out on him and not know why. Most EMTs first response is to pump you full of adrenaline AKA Epinephrine. That can be very bad or even fatal. I wear a medical alert necklace stating NO EPINEPHRINE on it. Another thing, If you have any sub-Q Sandostatin (daily inj.) it would be a good idea if you give yourself an injection before going to the dentist or take it along with you. (Or any procedure for that matter) This is referred to as a "rescue shot". Even if you are on Sando LAR you can give yourself a small dose if you are dealing with some symptoms that flare up. It happens. Also, as long as you keep the daily sando refrigerated and it doesn't look cloudy it can be used even if it is past its expiration date. I have taken mine with me to CA from NYC in a wide mouth thermos with tiny icepacks surrounding it and it survived the trip fine. I've had mine since '07. At the last Support group meeting we discussed this situation with a couple of new patients and a few of the "veteren Noids" said they had a very thorough discussion with the dentist every time they go. So it is very important to talk about it. Plus, the more people learn about this disease the more it will lead to research. We need to spread the word. I talk about it with anyone who will listen. I bring pamphlets and info to all my doctors. Especially my gastro. These Dr.s are the first line of defense. They are the ones to find these tumors, in the for-gut anyway, with colonoscopies and the like. Hope you are well now. peace, Katsen57
by flapjack on Fri Apr 08, 2011 07:11 PM
What were other people's CgA results? I had a CgA of 26ng/ml (normal at this lab is 1.9-15ng/ml). Any reason to worry or have further testing if only slightly high? Not on any meds, but all the symptoms worsening for years, getting full scopes and capsule test soon.
Thanks, and best wishes.
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