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Hi Im new diagnosed with Malignant caricnoid tumors in June 2010 during a exploratory surgery when nothing else worked

Posts: 1
Joined: Feb 2013

My name is Crystal and I had been sick since 2007 when I first had symptoms but due to the fact I was pregnant the symptom i had are pretty common to pregnancy symptoms. after i had baby i still had symptoms but i was having other problems it seemed like my health decided to come crashing down all at once. I had to have emergancy gallbladder surgery, then after that I had a series of many surgeries and procedure. In January 2010 my Gi and family doctor came into my hospital room to tell me that all my scans and blood work are all normal the famous words I heard was "Im sorry Mrs Crabb we dont know what wrong with you", then they added we believe this pain is all in your head we are calling in a phyc doctor and a pain manangment i caught on really fast I said if the pain is all inmy head why would I need to see pain managment doctor and my Gi came to my bedside to say well we believe u that u are feeling pain so needless to say I got very angry and said a few choiced words and I decided the only way Im gonns find out whats wrong with me before i die im gonna have to be a advocate for myself to get things done after alot of crying and praying. I got my head on straight went to find a pain manegment and for the 1st time in 3 years Im not in crippling pain it was great I could do things at home it was great. I went to see my surgeon and told him what happened he said ok, I asked him I said I have been researching and what I keep coming up with is exploratory surgery and he said ok well lets do some tests and medications if they dont work then we will do the surgery. Sure enough June 2010 i was on that table having surgery this was the first time I asked for surgery just because I was at the end of the road and everyone i trusted with my life pretty much told me I was crazy and this was all in my head. after the exploratory surgery while I was being wheeled to my hosptial room I asked for my surgeron I asked him am I crazy he said no honey he said ur very sick he said ur Gi is gonna have to listne to you and treat you cause this is something you cant make up at all. he told me the next day what he did and he said ur appendix was very unhealthy looking and I was confused simply becaue a year prior I had my right ovary removed in August 2009 due to endometriosis and my obgyn said that my appendix looked very very healthy and I was glad about that so when the surgeron said that my appedix had to come out becuase of the way it looked i was angry and confussed and happy all at the same time. I was not crazy for one and there was a diagnosis. So at my post op with my surgeon is when he laid the boom on me he saved it for last since we had this type of relationship that I didnt BS him and he never BS or sugar coated anything with me, So when he said you have malignant cancer and its rare he said it was found in ur appendix the tumors were 5mm and it a pretty much cut and dry case no worry for treatment i had no idea about this cancer. It took me awhile to stop crying because I had a disgnosis but that diagnosis came back to a rare malignant cancer. I did researcha nd I cried more I tried to get in to see a oncologist on my insurance it took me 4 months after I had the surgery to see him when I did he did CgA blood test 24 hour urine 5hiaa and MRI, he came back and said ur numbers are really low for just having it removed. He told me i will get this cancer back he said once u get this kind you will get it back kinda like u will either die from it or with it. So in April 2011 after being in remission for 10 months and happy as can be no more pain no more anything I was awesome. So when the symptoms showed up mid april 2011 I was scared I said this cant be happening again no and I vowed I would never go through the pain I went through or the stress of hearing sorry mrs crabb we dont know what wrong with you.so i went to see my oncologist whom told me to come back asap if i get any symptoms back and I did and when my CgA blood test came back n a normal range he said you dont have the cancer again he did a ultrasound and found that my liver and spleen are enlarged he told me that was the cause of my pain, but I said whats the cause of the flushing all these symptoms that had gone away are now back. He did have an answer but I do believe he didnt want to have anythign to do with me because i didnt have any inusrance at the time. So i seeked 2nd opinoin and as i started talking right away he says you have carcinoid syndrome lets do a CgA and 24 hour urine 5hiaa he said the number dont matter he just becuase of the your history with the cancer being malignant and you ahve the symptoms now he said I will start you on Octreotide and see how you do. My CgA came back to a 4 range 1-5 he said I would rather see ur numbers at 2 the highest 2.5, in Agust 2011 i start my 1st treatment scared to death to not know how i am gonna react to the octreotide other than a lil nausea I did  really good and I was a mazed after a few weeks I noticed a difference in my symptoms, I wished i had this back in 2009 at my sickest. We end up moveing and so i had to find new doctors in a new town, so I find a oncologist of course he does the CgA blood test this was done August 2012 a year after the 1st one and my number was a 9 he 1st said the range was from 1-5 but then he decided to change the range I said the range only chages from lab to lab so he said its still normal he said the range is 1.9-15.0 this is the range for this lab getting worse please help me. It was like talking to a wall.he told me in September 2012 I have carcinoid Syndrome and when he tests me again in 3 months if my numbers go up just by one he will have me on the table fidnig the tumor well at my 3rd month checkup I guess he forgot what he said he was gonna do, he never did he Cga. I was upset so after my appointment I  got really bad in January 2013 and I went back to see him becuase i was dropping weight like crazy for no reason and when I went back to see him and told why i was there he acted like he didnt believe till he looked at my charrt and saw the the amount of weight i dropped. He said well Im gonna do a very special test like i have never heard of this test and like he never ordered this test one me before which let me know he had to many patients and even with a chart cant remember what he has told his patients, so I did the CgA test again and I did like i did the 1st on a friday afetr fasting and In the morning and when I went back end of January to get the results my number went up 4 times what was its now a 46 and as far as I knew i did it in the same lab at the same place at the time everything was the same and 1.9-15.0 was the range well now he upped the range to anything less than 93 is concered normal and I noticed that everytime my number went up so did the range becuase since my number was a 4 range 1-5 he stayed with it he didnt think my number would go up at all and when it did so did the range and when i questioned he said well this is what our lab uses i said ok so when I test again the range will be 1.9-15.0 he said yes unless you go to a diffrent lab he said each lab has a differnt range I said ok so when my nunber went up to 46 I cried and then cried more because he says oh the range is anything less than 93 is normal. No this is not normal if i dont have this cancer there should be no reason my number should go up this much in a 5 month period from one test to the other it went from a 9 to a 46 this is not normal and now Im gonna have to get a second opinoin because I dont like the face he cant remember what he says. i read up on this and i read on many sites it says if your number goes up thats not a good sign and i read the different labs and there ranges then I read that they had a mean number anyhting in the range of 40-1000s is abnormal and anything less than 40 is normal its a high normal but to be suspisous of this cancer espeically if there are symptoms. Since I have been sick again since 2011 my number was a 4 (1-5), 2012 August- 9 (1.9-15.0) and five months later january 2013 46 (1.9-15.0)

Posts: 100
Joined: Mar 2011

Have you consulted with a specialist?  This is such a rare type of cancer that many oncologists don't know how to treat it.  I was misdiagnosed with cholangiocarcinoma in 2010, discovering 2 1/2 years later that I have neuroendocrine carcinoid tumors (malignant) that orginated from the tail of my pancreas.  Fortunately mine are slow-growing and don't cause carcinoid syndrome symptoms (flushing, diarrhea, etc.); however, it still needs to be controlled and monitored on a regular basis.  Currently I'm being given Sandostatin injections (octreotide) in an attempt to control and shrink my tumors (and I have many).  Once my insurance changes from HMO to PPO, my specialist will decide when he can start resecting my lesions, starting with the orginal tumor on the tail of my pancreas, and later with affected lymphnodes liver lesions.  He's hoping to remove as much of the growth as possible.  He said my prognosis is pretty good in spite of the fact that my cancer is stage IV, and that we will always need to be one step ahead of my disease as I may go into remission but will most likely never be considered cancer free.  When you have a chance, go to the carcinoid.org website.  You may be able to find a specialist in your area.  I see Dr. Edward Wolin, who is with the Samuel Oschin Center at Cedars Sinai in Los Angeles. 

I hope this helps!

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Joined: Aug 2012

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