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Carcinoid Tumor

Posts: 2
Joined: Aug 2010

Two days ago the doctor told me I have a carcinoid tumor. It's located in the lining of my stomach. After a CAT scan, I am going to have surgery. This is all new to me. From what I've read, I'm not overly concerned, but I'm also pretty optimistic by nature and have a strong Christian faith. I understand that carcinoid tumors are rare, and depending when it's discovered can be removed and cured completely. I am looking for others who have had similar tumors. Any input will be appreciated.

Posts: 1
Joined: Aug 2010

How did the doctor reach the carcinoid diagnosis? Biopsy?

Have you had an octreoscan? This scan is specific for carcinoid. Do you see a carcinoid specialist? Have you done a 24 hr. 5HIAA Urine test or a chromagranin blood draw or pancreostatin blood draw. Also, are they calling this a Gastric Carcinoid? If they did a biopsy, did they check the KI67 rate (growth rate) of the cells. Did they check your gastric levels?

Start collecting copies of all your lab work, Scans and get copies of the Scans on CD before you ever leave the hospital. Get a copy of your pathology reports. In other words, every time they stick you, cut you or scan you, GET THE REPORT. Start your own files and keep copies of everything. I have done this for 20 years. You should see my filing system.

Here are some web sites for you to check out to get more information:
www.acor.org (This is a group you can join and many people will have good information for you and probably can answer lots of your questions.)
Also Google Caring for Carcinoid to get web address.

I don't know what area of the country you are in but here are some "specialists" in carcinoid:

Eugene A. Woltering, MD FACS Kenner, Louisiana Maybe listed as New Orleans

Aaron I. Vinik MD. PHD, FCP, MACP Norfolk, Virginia

Thomas M. O'Dorisio, MD, Iowa City, Iowa

These are just a few but many more in U.S. You will see some of these and many more listed on some of these web sites.

I would probably get a second opinion from a specialist before I had surgery.

Don't know if this helped, but I wish you the best in this battle with carcinoid.

Sarah Rees

Posts: 2
Joined: Aug 2010

Your email is full of tremendous resources.

I have some "yes" answers for some of your questions. The cancer was discovered by a biopsy. The doctor was looking for the source of anemia which had been discovered a couple of weeks before through lab work. The blood draws were done along with the 24 hour urine sample. I haven't seen the doctor since, but when I do I'll find out the results. I don't remember the term Gastric Carcinoid, but I'll also ask about that when I see the doctor again.

Regarding the CAT scan, that should be authorized early this week. It would already be done had it not been for an incompetent clerical worker. The doctor told me I would be having surgery at USF asap. I checked out the USF ranking regarding cancer, and it is number eight in the nation. The other two options in Northern California are Stanford (number 11) and UC Davis (number 50).

Regarding reports, there haven't been too many so far. It ought to be easy getting them all together.

I hope to hear from you again. If not, thank you so much for the advice and suggestions.

Scott Harrison

Posts: 1
Joined: Sep 2017

I was diagnosed in early 2015 with neuroendocrine tumors, primary being in the small intestine with metastasis to the ovaries, liver, mesentery and lymph nodes.  Surgery was performed with removal of all but some cells too small to see or remove on my liver.  Now I am 2 years out from my surgery and tumors (4 cm and smaller) have reappeared on my liver (at least that's all that are visualized on current scans which I get every 3 months).  These appear to be growing faster than the ones that were removed.  My doctor believes that original cancer began several years ago. I started the samotuline depot injections 5 months ago, but unfortunately, my flushing has become worse instead of better and as I said, there continues to be decease progression.  The doctor does not seem alarmed, but he also said I am not a candidate for surgery which means he doesn't think there really any other treatments for me.  Does anyone have any insight on decease progression after surgery.  Am seeing an oncologist at the LSU Clinic in Kenner (a clinic specializing in neuroendocrine cancer), Dr. Robert Ramiriz.

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