If You Had Carcinoid Syndrome, Would You Know?

What is carcinoid syndrome? This syndrome is caused by tumors that grow in the mucosa of the gastrointestinal tract. It occurs in people who have carcinoid tumors, although not all go on to develop the syndrome.

Substances that normally circulate throughout the body are overproduced, such as serotonin. That’s what fires up the symptoms. Symptoms include:

  • Diarrhea
  • Flushing
  • Heart valve lesions
  • Cramping
  • Wheezing
  • Cyanosis

Getting correctly diagnosed with carcinoid syndrome isn’t particularly easy when it’s in the beginning stages. Most of the symptoms correspond to many other conditions, so it’s usually fairly advanced when caught.

Making a correct diagnosis even more challenging is the rareness of carcinoid syndrome. Chances are, the doctor just isn’t looking for it.

So, once carcinoid syndrome is identified, then what? Treatment is based around preserving lifestyle, and in some cases, reducing the size of existing tumors to make the person more comfortable.

As with any disease, rare or not, partnering with a healthcare team is an important step in managing life with this syndrome. One way to do that is by keeping accurate records of any symptoms you may experience in between your regularly scheduled appointment. That will make it easier for doctors to determine the most appropriate treatments. It also shows that you are invested in your health and healthcare.

If you do have this rare condition, there’s a great website called Carcinoid Connection. It contains a wealth of resources and lets you learn about different patients’ journeys.


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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