A little more about me and more about Carcinoid Tumor

Today I visited my primary care physician.  My purpose was to get an EKG because my cardiologist was concerned about low pulse rate and high blood pressure last week.  Also, to have the doctor look at my back. I have had severe back pain every morning for about two weeks.

Good News! EKG was great! Also, blood pressure and heart rate were very normal.

My doctor thinks that the back pain is my sciatica which I have had for 4 or 5 years.  He prescribed an anti-inflammatory. He also has had me schedule a bone scan because carcinoid cancer can metastasize to bone.  We do not think this is the case with me but just want to make sure.

Carcinoid Metastasis: Carcinoid cancer can metastasize to the liver (the most common, that’s me), local lymph nodes, bone, ovaries, prostate, skin, and maybe lung.  Obviously, we carcinoids (and our doctors)  have to be observant about where we have pains and aches.  I recently read that only 10-15% of carcinoid tumors metastasize.

In the past few months I had two instances when I became enraged at complete strangers.  I felt uncontrollably angry.  This is not me. I have been concerned about it.  I’ve also felt that I fail to remember whole conversation more than I used to.  Just recently I read about this:

Carcinoid Rage: Mood swings are well known in cancer patients but it seems that carcinoids get a special kick from the strange brew of chemicals that our tumors mix into our blood.  Researchers believe that mood swings and memory loss are a side effect of carcinoid tumor and that Carcinoid Rage is a good description.

Of course, now that I know this, my only good option may be to hit the meditation pillow more often and learn to strengthen my compassion and control of emotion.

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A little more about me and more about Carcinoid Tumor was last modified: February 12th, 2013 by cy

11 thoughts on “A little more about me and more about Carcinoid Tumor

  1. Hi! My name is Paula Davis and I was diagnosed with carcinoid tumors in October of 2005 after seeing 13 doctors who told me the abdominal pain was all in my head! Ended up having emergency surgery just before Christmas that year, small bowel full of tumors which showed up on no tests but had caused almost total blockage. I am on the 30 dose of Sandostatin Lar. The tumors had gone into the liver which is how they finally diagnosed the disease. I found Dr. Charles Nutting conveniently located in Denver as I live in Monument near Colorado Springs on the Carcinoid.net website. He is with Radiology Imaging Associates. My oncologist had never heard of him or his procedure which involves putting microbeads filled with a radioactive substance straight into the liver. One day procedure, no overnight hospital stay. It absolutely worked for me, the tumors in the liver have shrunk a bit and no more have shown up since the procedure in September of 2007. I am sure I probably have tumors in other places by now as half of the lymph nodes they biopsied from the surgery were infected but I am leading a close to normal life. I tried the trial thing at U of C as well but was turned down as I had the procedure from Dr. Nutting, rather be alive and active than in a test so no regrets there! Other than watching what I eat and drink, I am pretty much astounding my oncologist. Worst thing for the disease is stress so I take everything with a grain of salt as far as following the rules, I do have a glass of red wine with dinner, try to eat a little less than I used to, but basically, I really think it is attitude that is keeping me going so well. I manage the disease, it does not manage me! A word about the tests, they don’t work on everyone as I had all the usual ones and none of the numbers changed before I had the meter of bowel removed to this day! No one can tell me why! They keep having me do the Chromagranin A, etc. every 3 months and heart ultrasound about every 3 years. My oncologist says you most often don’t die from the tumors but rather from heart valve problems as the seratonin, etc. gunks up the valves eventually. Hope this helps some of you out there. I am turning 67 in March and have been diagnosed for 8 years in October although you have to have had the tumors around 8 years to have the syndrome so probably have had the cancer over 16! Just really thankful that it is so slow growing and that my heart is not compromised so far. Cy, let me know if you have questions about any of this! Hope you are stable now.

    1. Thanks so much Paula for your comments and good wishes. I am scheduled for chemoembolization in March which is similar to your procedure (is that called Sir Spheres?) except using chemo instead of radioactivity. I have the chromogranin A, plasma seratonin, and gastrin blood tests every two months. Just completed the 5-HIAA urine test which is supposed to be much more accurate than the plasma seratonin. I had 3 heart ultrasounds last year.
      I also must have had it in my gut for at least 6 years before I was diagnosed since the tumors in my liver are so large.
      One paper about causes of death said that 33% die of liver failure and 25% die of heart failure with the rest being a number of other causes.
      I am very grateful that this grows so slowly. One oncologist told me: “If you have to have cancer, this is the cancer to have.”
      Continue being stable! May you have the best possible outcome.

  2. Hi,
    I am a 34 year old man in India. I have several symptoms similar to Carcinoid – face flushing, ear lobes swelling, breathing heavily / wheezing, arrhythmia, palpitations, fluctuating high bp. But I do not have diarrhea, instead have constipation and dehydration. Have weight loss due to diet change. At first I suspected food intolerance. Most of my symptoms come after eating food, so i went on an elimination diet… now i have eliminated Wheat, dairy, legumes (most of Indian food is made with legumes), beans, eggs and some other histamine foods like spinach and tomatoes.
    My flushing and arrhythmia have gone, but other symptoms are still there. My doc ordered some tests which mostly turned out to be normal except for my 5HIAA levels- 1 year ago they were 6.6 and now they are 10.9. However my serotonin levels are 125 and my Chromogannin levels are 36 (both within range and on the lower side.) My adrenaline and noradrenaline are also normal. My upper GI endoscopy and biopsy has come out normal with no malignancy, Kochs disease or Celiac disease, but showed chronic inflammation. My liver function tests showed increased globulin, but my doc said that happens due to any inflammation in the body.
    I met an oncologist who told me that though the 5HIAA is small i should do a MIBG and a Capsule Endoscopy to rule out the cancer. She advised me to meet a nuclear medicine expert.
    My GP told me to meet a GI specialist since he suspected a GI disorder. I also went to an Allergy Expert who advised to take Histaglobulin injections (my IgE levels were 133).
    Me and my wife are at our wits ends since we have been chasing doctors here in India for the last year and half. Is this cancer or is it something else? Are my test negative because it is still early stage and not spread out (which I hear is a good time to start a treatment)?
    Can you share some knowledge / advice on how you diagnosed, at what stage and do you know others who diagnosed who went through the same journey as me?
    Thanks in advance.

    1. I am not a doctor, but, my understanding is that the 5HIAA levels are sometimes more accurate than the blood serotonin and Chromogranin A. This is not true for me but is true for some others. Every patient is different.
      As I stated in the “Carcinoid Cancer – My Story” page, I was diagnosed by accident. The tumor was discovered in a CT Scan searching for something else. Have you had a CT Scan? A nuclear expert might also specify an octreoscan which might identify existing tumors.
      There are many patients who were not properly diagnosed like you. I suggest that you join the listserv.acor.org carcinoid discussion list. You will find a lot of advice and sympathy.

      Again, be aware that you are not alone. Many of us have struggled to get a diagnosis and treatment.
      May you have the best possible outcome.
      Cy

      1. Thanks a lot for the info Cy.
        I had a lung CT 5 years ago, none after that. Had a lung X-Ray 8 months ago, nothing there either. But no GI CT scan yet.
        I plan to visit a GI on friday and also a neuclear medicine expert on the weekend.
        Thanks for the info and the reference to the discussion list.
        I wish you the best for your future too.
        AJ

  3. my name is shirley,
    my husband had to have his lower bowel removed lymph nodes also 4 years ago, then we find out he has got Carcinoid 0f the liver,doctors have been giving hubby blood tests, urine, and cat scans,but on monday they say his liver levels have gone up some ,early april he was told he has got aggressive prostate cancer
    he is going to have it removed,i have asked the doctors if it is becacuse of the carcinoid they say no but i disagree

    1. Shirley,
      I am sorry to hear of the suffering that your husband and you are going through.

      Hopefully, your husband’s doctors have told you that metastatic tumors can occur even after they remove the primary. I am told that the primary releases “microtumors” that float around the body for a long time and may eventually land and grow.

      Have the doctors tested the prostate tumor to determine if it is carcinoid? This can happen.

      If the prostate cancer is the more normal kind of prostate cancer, it probably is not because of the carcinoid tumor. There are many people who have multiple types of cancer at the same time. It may be a genetic tendency. I suggest that you join the http://www.acor.org carcinoid discussion group. There are many people who have multiple cancer types.

      If you are on Facebook, you could also join the Carcinoid Cafe page.

      As always, may you have the best possible outcome,
      Cy

  4. hi there,i have asked them weather this is related to the carcinoid and they say no, how can they say this ,my god my husband had this biopsy done on the 14th april was told you have cancer of the prostate ,you must see another doctor the next one tells us he has a agressive cancer go and have a MRI has that then tell us the cancer has come out of the prostate now sending him to a radiation doctor next week we said he wants to have to op then get told you can have op on the 6th august we have private health cover but you still have to wait now we find out that his levels on the liver have gone up not to worry thats all we got will do Cat Scan after the op no medication for the liver i am going crazy here

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