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Having neurofibromatosis. Diagnosed with carcinoid of the duodenum and lesions in the upper intestine. Advice

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Practicing since : 2002
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My step daughter has neurofibromatosis. She has recently been diagnosed with a "carcinoid" of the duodenum and lesions in the upper (small?) intestine. Do we need to see a doctor specializing in NF? Feel like we have been in a three ring circus for months and don't know what to do. She also has an enlarged ovary, blood in the feces and endometriosis. Don't know why the doctors can't put together a course of action. Please help!
Posted Wed, 13 Nov 2013 in Cancer
Answered by Dr. Robert Galamaga 1 hour later
Brief Answer:
See an oncologist

Detailed Answer:
hello and thank you for sending the question.

I think it is very important that you establish with a local oncologist. The oncologist will properly manage the carcinoid. this is a unique type of cancer which requires close monitoring. There are several potential therapies which might be reviewed. These can hopefully keep the carcinoid under control for a very long time.

if you believe that she is not receiving optimal care it would be reasonable for you to request a consultation with a physician at a University Center.

it sounds like she has multiple issues going on. These may be separate or partially connected. this will require thorough review by general physician as well as neurologist and oncologist. there are neurofibromatosis centers at some universities. This might be reasonable for you to explore.

I can appreciate that you were dealing with a very stressful situation. I hope that you find a connection with physicians who can properly address your needs and concerns.

Thanks again for sending your question. Please let me know if you have any additional specific concerns.


Dr. Galamaga

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