Carcinoid Tumors

[livingwith]

I was diagnosed last August after being sick for several weeks, all kinds of scans and test were done, I was tod by my primery docotor I had fatty tissue on my liver and the after another scan he said it was cist. Well then after more test and still being so sick he checked by gall bladder and decided it had to come out, gall stones, Ok, that was easy the laproscopic way, but while the surgeon was in he noticed places on my liver?? He did a biopsy adn it was carcinoid cancer and it was malignant...Read the full article

[nancybear]

My carcinoid tumors first showed up as liver metastasis, too. One tiny one first showed up when I had some follow-up scans for an acid reflux problem. I had no carcinoid related symptoms. My family practice doctor pursued getting a liver biopsy, then urged me to go to a teaching hospital rather than stay with an oncologist (a co-worker in his clinic!) because he wanted me to have the newest information and care. I am fortunate to live 48 miles from downtown Chicago where both Northwestern University and the University of Chicago both are treating and researching carcinoid because very few oncologists treat multiple cases of it in their practices.
I chose Northwestern. Since 2004, I have had 2 octreoscans (the test you had that took several days). Octreoscan shows only tumors with a certain protein unique to carcinoid. It indicates location but not size. Every 3 months I have a tri-phasic CT. I drink a barium cocktail (not TOO awful) which creates contrast in the small intestines to show any tumors there, and they also inject dye which shows liver tumors from the 3 different ways blood flows in and out of the liver. I also get an injection of long-acting Sandostatin every 4 weeks. It's not technically chemo and doesn't make me feel the least bit sick. It's usually used to help symptoms of carcinoid syndrome, which I don't have, but is thought to possibly help slow tumor growth.
In my case, the primary tumor in the small intestine did not show up right away. My doctors said liver surgery is not usually the first line of attack when tumors are scattered throughout the liver. They performed chemo-embolization 3 different times in order to treat the different lobes of the liver. In chemo-embolization, they sedate me (but not really put me to sleep although I usually don't remember much), then they go through an artery in the inner thigh and feed a tiny catheter up to the liver watching through a CT to guide them where they want to go. They release chemotherapy drugs directly to the tumors in that area then seal it off with a little oil! General chemo to the whole body isn't usually effective but this gets right to the spot. All my tumors treated this way stopped growing and many are gone or much smaller. There are other treatments similar to the ones I had. They include Therasphere which is done just like chemo-embo but instead of releasing drugs, they release TINY glass balls filled with radio-active material that lodge directly into the tumors and only radiate for a few days. They are so tiny that the radiation stays within a millimeter of the tumor so the rest of your liver and body are not affected. And the other treatment is radio-frequency ablation, another pin-point accurate treatment with radiation.
I had the treatments done in 2006, but since the primary tumor hadn't been located, new tumors continued to appear in my liver. Then, last January, the CT showed the primary in my small intestine. First they did a colonoscopy to rule out any tumors in my colon (it was clean, yeah!) a month later they performed surgery and removed the tumor and some lymph nodes as well as loping off a 4 cm. tumor on the very edge of my liver. (I also have a lovely 9" scar down my belly). My surgeon said the growth in the intestine was a only a few months away from causing an obstruction.
Since the surgery in February, my little liver tumors have remained stable. I look at it as if the primary tumor was the head terrorist in the control room and the liver tumors are his little soldier terrorists. When he was in charge, they ran wild, without him, they're confused and wimpy.
Many people have prayed for me from my family, to my church family, to co-workers and friends. From the beginning, I have not experienced that, "Oh God, why did you give me cancer?" moment. I am so blessed not worry about it. I do read about it (the Carcinoid Cancer Foundation is the site to get your basic facts and most current treatment options), but it has been something I just deal with as it comes along and don't fear death, I'll take whatever God gives me. Faith and a good attitude are the best medicine. Lest you think my faith is something special, I have to confess that while I don't worry about the disease, I do catch myself worrying about money. What do I think? That He can handle my health, but needs help with the finances?! He always provides and has come through every time so I just need to kick myself now and then and say, "Shape up!".
If your doctors haven't had a lot of experience with carcinoid, find one that does (there's a list on the Carcinoid Cancer Foundation web site). If an expert is far away, try to see one and have her (or him) direct your treatment through your local doctors. I could see that my local oncologist was hurt when I decided to go to Northwestern but she got over it and remained interested in my case. You have to be your own best advocate.
I hope this was some help if only to know you're not alone in having this disease. God bless you in every step along the way.

[stephalee]

Hi Nancybear,

I really identified with both your story and your attitude towards the disease. I would be interested in corresponding with you via email. Let me know if you are interested...

[stephalee]

GET A SECOND OPINION! Where they differ, then get a third opinion. Use the internet to find out who the local experts are in your area/state/country and see those people who specialise in your type of problem. Good luck!

[quill]

Hi
This is my first time on this web site. I started with the appendix and now think that five years later is in another area. when they diagnosed me the first time I had all the carcinoid syndrom markers. Recently I started getting some lactation, and have had all except one ovary removed. The oncologist I have said its been five years. Many of the telltail markers are back. Does this sound familar.

Quill

[pat6790]

Hi my name is Pat and I also have carcinoid cancer. I had my tail of my pancreas removed and also my spleen. I have two small spots on my liver, which they are just watching. So far so good. I don't have to go back for tests until March 2009. I am feeling fine, and go to work everyday. I feel I am Blessed by God that it is a slow growing type, and that they took most of all the cancer out. I hope you do well, and I will keep all cancer patients in my prayers. Pat

[MarineMom500]

Would like to know how things are with you now, I have been sick for over a year and last Nov.07 I went into the hospital and they did a CT scan found a cysit on the right overry and that my Liver was enlarged to 17.5 cm. April 08 my appendix bursted and found a Carcinoid tumor inside. was told then everything was fine the Liver had enlarged to 19 cm now. I was still very sick and they were watching the cysit. it has grown to a 4.7cm now and the Liver has enlarged to 23 cm and they found one spot on it they feel is a (fatty deposit). and now my spleen has enlarged. can you give me any info. on what you have done and if it has helped. Thank you Nena

[mindygirl2009]

First of all I want to say Well,done thy good and faithful servant. Second of all,it seems to me and I am now MD,that carcinoids are sorta like buckshot. If you target one thing it will hit that but will send tiny little buckshot all around the surrounding areas. Or, it reminds me of those little flowers that you blow in the wind.The seeds blow in the wind and make new flowers.Hang in there sweetie and remember God is with you always.

[embee]

Hi NancyBear - My sister who lives in Chicago was just diagnosed with a carcinoid tumor in the appendix. I would be happy to hear which doctor you are seeing at Northwestern. Thanks much, embee