About My Carcinoid

I am a cardiologist and I have carcinoid.

Carcinoid is a rare malignant tumor, a type of cancer that can occur in the lungs, the gastrointestinal (GI) tract, or the pancreas. They are part of larger group of cancers called neuroendocrine tumors (NETs).

I learned about the effects of carcinoid on the heart when I was in training at St. Louis University Medical School but because the disease is so rare I had never seen a case of carcinoid heart.

I’m writing this blog to help fellow patients diagnosed with carcinoid navigate the diagnostic and treatment pathways available to them.

I found out I had carcinoid after a long and arduous journey  through the medical system trying to determine the cause for my iron deficiency anemia.

I have three Big Lessons to pass on based on my own personal experience

  1.  If you have an unexplained iron deficiency anemia pursue whatever diagnostic testing necessary to find the source. Something is likely bleeding in your GI system and it might be a malignancy that if treated early could be life saving.

It took 2 upper endoscopies, one colonoscopy, two video capsule swallows  to identify a small bump in my ileum that turned out to be one of many carcinoid tumors I had in my small intestines.

2.  Once the diagnosis of carcinoid or NET is made or even considered,  seek out a true expert in the field. These true experts are scattered around the country and the world and even large metropolitan areas with highly respected academic medical centers(such as St. Louis) may not have one.

After considerable research I ended up seeing Dr. Thomas Odorisio at the University of Iowa, located only 4 hours away. Like the other true experts , Dr. Odorisio was engaged in cutting edge research in the latest diagnostic and clinical treatment approaches.

As part of a study with Dr. Odorisio  I had a Gallium PET imaging exam which looks which much greater sensitivity for carcinoid tumors and this demonstrated residual uptake in my ileum.

3. Have any surgery involving carcinoid done by a surgeon who specializes in NETS and carcinoid surgery and therefore has done a lot this type of surgery.

After laparoscopic surgery discovered and removed carcinoid from my ileum I had to have a second larger surgery because not all of the tumor had been identified.

The second surgery was done by a true expert on surgery for carcinoid/NET, Dr. James Howe at the University of Iowa.

 

 

 

 

 

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2 thoughts on “About My Carcinoid

  1. Aubrey A Winkie

    I just got diagnosed with a pancreatic NET cancer but am worried about having a GI one as well. I have unexplained severe anemia that has not been helped with Iron infusions. I also have a ton of GI problems that they have not been able to find cause for (can’t eat without extreme pain and am fed with a feeding tube) Meeting with the surgical oncologist next week in Austin, tx but requested an appointment to see a NET specialist in Houston (Dr. Yao) So did your tumors show up on the gallium scan? They are going to do one of those. They only found my pancreatic one during and endoscope it hadn’t shown up on any CTs.

    Reply

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