For several months I have subscribed to a service provided by ACOR. (That's an American Cancer group that sponsors an email list for various cancers.) It is a list for carcinoid patients and their caregivers to write each other and write Dr. Eugene Woltering, who is a carcinoid expert at LSU. He has a team of doctors, nurses, dietitians and others at Kenner, Louisiana.
The carcinoid patients share information about their particular case, and write about ideas that have helped them. It was from this group I learned that my dose of Octreotide LAR could be split in half. I found another woman whose metastatic tumor in her liver shrank after she began Octreotide treatment, and is so small that it cannot be seen in scans; so I am not alone. It's quite amazing for me to be able to address a question to an expert who has seen over 1000 carcinoid patients. He, also, has access to data from many more patients, and publishes about neuroendocrine cancer.
Therefore, on April 3 this year, I decided to ask Dr. Woltering what my prognosis is. I had been reading other's posts for months, hoping to see anything similar to mine. However, no one else had a primary tumor in the same location as mine, so I went ahead and asked him.
My email:
Subject: Dr. W Ever Seen a Metastatic Microtumor in Proximal Duodenum?
Dear Dr. Woltering,
I'm in good condition right now. My primary tumor (0.7 mm) was removed in 2008, and the small metastasis in the "dome of the liver" seems to be kept calm by Octreotide most months.
I'm just curious if you've had any experience with a foregut tumor in the prox. duodenum? Is the prognosis about the same as for midgut tumors? I've seen information that my odds are better on one hand, and that they are worse because they are microtumors, on the other hand.
I have been helped by your advice to break up my 40 mg of Octreotide LAR into 2 shots per month. Thank you.
God bless,
Sharon
The answer from Dr. Woltering was "Way better prognosis."
So I figure I'm good for the next 20 years. I didn't say things would always be good for 20 years, but there is a brochure that says carcinoid patients can live for 20 years. (I met a couple on the Internet.) If I have a way better prognosis than the typical carcinoid patient, I'm going for 20 beyond the 5 years I've already had!
Thank you very much!
Really pleased to hear this, Sharon!! You've done so well and have been so proactive in your care and treatment - I can easily see you making it 20 years and beyond!!
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