I was diagnosed with Carcinoid Cancer with Carcinoid Syndrome in 2003. By that time I was down to about 105 lbs, wore a size 5, (normal size was 10), and felt like I was what I called a member of the 'walking dying humans'. Fortunately my Onco kept trying to discover 'what cancer I had'. I had been to 2 very large & excellent hospitals leaving without a confirmed diagnosis. Both of them thought I had 'a cancer' but had no idea what type or where. Of course all the medical centers were centering around my genetic predisposition cancers, colon, pancreatic, and ovarian. All these tests were of course negative.

My Blue Cross/Blue Shield stop paying for any further testing. My Onco (who was convinced I had a 'cancer', told me there was 1 more test, a nuclear one in a location not far from where I lived and it was expensive. My husband & I agreed to do the test, knowing the costs, as a 'last chance' effort

When the appointment for the 'test results's arrived we met with my oncologist. He pulled his rolling stool close to my chair, held my hands, and looking eye to eye told me the test showed NOTHING WRONG!
Fortunately my body showed it's reaction by giving me a horrendous flushing episode! The doctor hugged me and said, 'I know what it is!!!! I can't believe it's this one and don't worry .... we have a world expert at EVMS in this type of cancer!
The doctor's name was Vinik and yes, he was an expert in that field, along with diabetes management. As it turned out, an extremely wealthy man had severe diabetes & had traveled everywhere to find someone who could help him. He had found Dr. Vinik, a South African native, doing a diabetes research partnership with Michigan University.
He relocated to Norfolk, Virginia thankfully for me! My Onco knew him & immediately got him on the phone to get my appointment. The rest is history.

Yes I still have Carcinoid Syndrome. However this doctor after my first meeting schedule a procedure with an interventional radiologist. He wanted my liver checked out where this doctor found & destroyed 3 sizable carcinoid tumors.

Unfortunately for me, I have an unknown primary. So technically unless it is found, I will stay on Sandostatin injections forever. But that is okay. I still have flushing, burst facial blood vessels, and I am only aware of my flushing if I put my hand to my face, pass a mirror, etc. The only place I can feel my flush is down my chest and on my back. I still have to go for injections every two weeks but that is a very small price to pay for waking up every day. And yes I still have multiple bowel movements per day, primary loose & weirdly formed, but hey .... I wake up!

That's our goal! Staying alive! If we live ..... we can handle mostly anything, someway, somehow .... If you have questions, maybe you can find a carcinoid support group near you or online. The Carcinoid Cancer Foundation, based in New York State, is a great resource. If you phone them, just ask for Grace. She is very helpful! Their web site also list other resources. They also have a list of all the best Carcinoid Cancer locations basically in the free world on their website.

Wishing you ALL the VERY BEST!

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