Date:   11/18/2003 8:14:49 AM ( 21 y ago)
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URL:   https://www.curezone.org/forums/fm.asp?i=1124

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Tara,

This website covers nutritional guidelines for persons with carcinoid disease.
www.carcinoid.org/MwarnerlectureSept2.htm


This web site discusses how to diagnose and monitor carcinoid which you may want to share with your doctor.
http://home.att.net/~S.L.Anderson/test.htm

Other helpful sites:
www.carcinoid.org
www.graylab.ac.uk/cancernet/101064.html
www.carcinoid.org/Carcinoid%20Website
www.carcinoid.org/JonasFAQ.htm
http://members.aol.com/thencsg/treatment.html
http://www.moffitt.usf.edu/pubs/ccj/v4n1/article2.htm


There are a ton of test you can do to determine if you have a carcinoid tumor:
Octreoscan - They inject radioactive dye into a vein (harmless)then you come in for a couple of hours each day, for three days in a row. If you have a carcinoid tumor the dyes clusters to the tumor and lights up on the moniter. The octreoscan test has a 85% success rate of locating carcinoid tumors. Unless the tumor is too small.

The 5-HIAA test ( the 24-hour urine test) is what you probably did which detected high levels of serotonin. Unfortunately none of my doctor instructed me not to eat certain foods that contained high levels of serotonin at least three days prior to doing the urine test which can produce a false reading. Some of the foods are bananas, pineapple, red plums, avocados, tomatoes, Tylenol, muscle relaxing medications.

The www.carcinoid.org web site provides a helpful list of foods with high levels of Serotonin. It is also one of the best websites I have found on carcinoid.

Other good tests are:
Cat Scan with contrast
MRI with contrast
Chest X'ray
Blood Serotonin
Blood CGA
Chromogranin A

I am curious what tests your doctor took, and what treatment he recommended for you to do? To me it seems
a bit radical to do chemotherapy. Plus, how can they do surgery if they can not locate your tumor, if any? From the research I have done, the treatment is usually dependent on the location, the size and if the carcinoid has spread outside of the organ. Perhaps you need to seek another opinion and do more research before you do drastic measures on a cancer that is so rare that it is difficult to locate a doctor who has even treated a patient with carcinoid tumors.

Dr. Richard R.P. Warner M.D. is the medical director of the Carcinoid Cancer Foundation in New York City, The telephone number is 212 722-3132, he may be able to give you a referral to a doctor in your area who is knowledgeable with the treatment of carcinoid. If your medical insurance covers it, and you can afford it, it may be worth the trip to New York to see Dr. Warner personally.

I can relate to the feelings you must be experiencing. It took me years of being passed around from doctor to doctor simply because none of them ever treated a patient with carcinoid or they didn't have very much knowledge of the diease( and I live in Los Angeles too.)

Every doctor has a different opinion too for what treatment I should do. My advice would be to research you illness, because your life depends on it, then get a few opinions on the treatment options. Once you have gathered information and know what your options are, make a decision on what you are most comfortable with.

There are several positive things about having carcinoid cancer. They are SLOW growing and even if the cancer has spread to other areas of your body, you can live for years whereas other types of cancers are very agressive and you don't have the same amount of time to make up your mind about what you want to do.

I hope this e-mail response finds you in good health and
that you have a network of friends and family for emotional support.
Kind Regards,
Sky Green





 

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