contrail's Journey with Carcinoid tumor, Small Intestine Cancer

Patient: Small Intestine Cancer > Carcinoid tumor

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 8 years ago, Female, Age: 79

  1. 1
    • contrail
    • Experience with Carcinoid tumor, Smal...
    over 7 years ago
    contrail's Avatar

    Being diagnosed with Carcinoid Syndrome

    Oh No

    I began this crazy journey in January with what I thought was a cold with a bad cough. It took forever for the cold to get better, but the cough did not go away. Then about the time the cold dissipated, I developed some small heart palpitations with the cough. These gradually got to be more of an issue, and when I would exercise, I would sometimes get a rush of heart beats that would cause me to be light headed. In March, I was walking on my treadmill for about a half an hour, and when I got off, I had a rush of heart beats, and I knew I was going to pass out. I sat down on the couch and lost consciousness for not more than a minute, but it scared me enough to call my doctor. She had me go to the ER, where they did all sorts of blood tests, etc., but could not find anything wrong with my heart. They sent me home with a 24 hour heart monitor, which showed some irregular heart beats, but nothing that was significant. One week later, after walking up our stairs at home, I passed out again, but this time, I was out for about ten minutes. When I was finally able to call out to my husband, he found me on the floor, and I was unable to get up, and I could not catch my breath. I felt like I was drowning. I thought I was having a heart attack. My husband called 911 and by the time the EMTs got to our home, I was nearly gone. They couldn't find a blood pressure or a pulse, but I was trying to talk to them. They took me to the ER, where they got me stabilized. I spent two days in the hospital where I went through a battery of tests to try to determine what was going on, including a stress test, CTScan of the heart and lungs, etc. Again, nothing significant showed up, so I was sent home with a 30 day monitor, a new blood pressure medicine, and medication for hypothyroidism. A month later, I wound up back in the ER with my lungs full of fluid. This happened in a matter of minutes and I was in bed at the time. The doctors decided I had pneumonia, but my lungs were beginning to clear the next day. On that trip to the hospital, I had an echocardiogram, which again showed my heart to okay. The cardiologist that was working with me, put me on a heart regulator medication. Two weeks later, I was back at the ER again. I had another crisis, where I had a rush of heartbeats, my blood pressure dropped and my lungs filled up. My heart was doing all sorts of crazy things this time. It would drop down to below 30 beats a minute, then it would go back up to 70 beats a minute. My oxygen level would drop below 90, etc. They finally got me stabilized and put me in the hospital again. A pulmonalogist happened to be on call and he came in and talked to me about everything that had been going on in the last four months. He told me I didn't have pneumonia, and he did the 24 hour urine test, plus and MRI and CTScan of my abdomen, and found I had the carcinoid tumor. I was referred to a gastroenterologist at a cancer hospital near me. I had the surgery on May 20th, and found out it had already metastasized to my liver. The tumor they found was not the primary tumor. So, I still have that in me, which makes me very upset, but the doctors tell me it probably wouldn't change my treatment if they found it. I'm also seeing a cardiologist to see if the syndrome has affected my heart at all. I still have some episodes where I feel like I'm going to pass out, but I don't. They only last for a few seconds, but they're still scary. I'm being treated with Sandostatin, and they're trying to get it regulated for me.

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  2. 2
    • contrail
    • Experience with Carcinoid tumor, Smal...
    over 7 years ago
    contrail's Avatar

    Port Placed for Blood Draws, IVs, etc.

    Decision Point

    I've been reading a lot of the comments on ports, the pros and cons. I had one when I was having chemo for breast cancer, and even though there were times when accessing it was a problem, I'm very thankful I had it. I had it removed after the chemo treatment was finished. I guess that was a mistake. Now with carcinoid syndrome, I'm having blood tests every time I go in for a Sandostatin shot, and my poor veins are becoming very compromised, so I have decided to have another port placed for bloodwork and IV's. It won't be used for chemo, so I have to talk to the doctor to see what kind will be inserted. I also don't know how long I'll have this, maybe forever. I just know I can't take anymore pokes with needles trying to find a vein that they can access. I had my port placed on August 21st. Everything went very smoothly and I had no problems following the surgery. The first time I was having it accessed was this last Friday, Sept. 6th. I was having a regular colonoscopy and needed an IV. The nurses at the clinic were aware that I wanted it accessed and were ready with someone who knew how to do this. Things did not go well. This is a power port that I have, and the nurse had a difficult time finding the 3 little nobs that help guied the needle in to where it should be, then when she did get it in, she couldn't draw any blood (which is pretty essential). After a couple of tries and 2 wasted access needles, I told them to just find a vein, which she did (with minimal trouble). They started the IV, I had the colonoscopy, and everything turned out fine. No problems found, which is good, because 5 years ago, they did find a polyp. Thanks goodness, there was nothing new this time. Anyway, I see my oncologist tomorrow and have labs scheduled before, so I hope the lab techs at the cancer hospital can access this, or I might have to go back to the surgeon and find out what he did.

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  3. 3
    • contrail
    • Experience with Carcinoid tumor, Smal...
    over 7 years ago
    contrail's Avatar

    Surgery

    Procedure or Surgery

    When I had my surgery to remove the carcinoid tumor, I thought that would be that, but when the surgeons got in there, they fournd that the tumor they had found was not the primary tumor, but a metastisis. They went through the entire small intestines and did not find the primary tumor. They did find that the tumor had already metastisized to my liver, and there were lots of very small tumors (like ground pepper), throughout my small intestines that could not be removed. In the surgical report it said that 4 tumors had been found in the liver. I don't know why they didn't remove the 4 tumors, but they didn't. The other thing that bothers me is that they didn't check any of the lymph nodes to see if the cancer had gotten in there and could be spreading elsewhere. I have never gotten any satisfactory answers to these questions from the surgeon or my oncologist. My life had changed dramatically since I was diagnosed with this disease. I worry a lot about what's going on inside my body and wish I had some straight answers about things. This whole experience is totally different than the one I had with breast cancer. I want to get back to my life as it was, but I wonder if that will ever happen.

    Went as Expected: Disagree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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