I’m in a good place right now and it’s all thanks to the guidance and knowledge I received from the Carcinoid Cancer Foundation website. My mysterious journey began when I started noticing random and unusual occurrences regarding my health in the form of: episodes of facial flushing-sometimes accompanied by a rash on my face and chest (especially when I was stressed or upset). Unexplained and uncontrollable blood pressure spikes, sudden periods of rapid heart beat and palpitations as well as asthma like symptoms. Most of these symptoms had been occurring over the past 5 years, but when I had my second small bowel obstruction in July of 2013 (the first one was in March of 2009) that was when I began to become deeply concerned about my health. Unfortunately nothing definitive was showing up on any of my medical tests during this time.
It was around Sept. of 2013 that, by the grace of God, something very peculiar happened. I’ve worked in the medical field for over 30 years and have a habit of investigating rare medical terms or conditions that I’m not familiar with. So when I can across the word “carcinoid” I immediately looked it up on Google. I was amazed…no, more like stunned to see all my unusual symptoms listed in the description of this rare cancer disorder! I felt like the “poster child” for this condition! I began combing through the comprehensive wealth of information on the website that l had just landed on which happened to The Carcinoid Cancer Foundation.
One of the most important things I came across was the “One page fact sheet” which I printed out. Finding out that over 90% of all carcinoid and neuroendocrine tumors are incorrectly diagnosed and treated for the wrong disease and that the average time to proper diagnosis from the initial onset of symptoms exceeds five years made such an impression on me! It sparked a fire of determination in me to find out if I really did have this disorder. However, getting a diagnosis proved to be more difficult than I ever thought it would be. The 2 main things working against me was that it was uncommon /unfamiliar and not easily diagnosed through conventional means like CT, MRI, and X-ray.
I came to realize the frustrating truth behind the simple yet profound statement at the top of the home page on the website- “if you don’t suspect it, you can’t detect it” It had to be suspected before the correct specialized tests and exams could be ordered. But I was already prepared for an uphill battle because of all I had learned. And despite being told to “Stay off the internet,” it was the combination of determination and the wealth of educational information, phone support, videos, and resources like the list of physicians by state under “Find a Doctor” that allowed me to overcome all the obstacles I encountered before finally getting a proper diagnosis and having a malignant tumor removed from my small bowel in December of 2014.
Now even under the care of my oncologist and team, I continue to refer to the website regularly for all the updated info it provides. Whether it’s life enhancing advice on nutrition, or life-saving info on how to avoid a fatal carcinoid crisis during surgery, I always come away having learned something new, important or encouraging.
I’m especially grateful to Dr Richard Warner, Medical Director of the Carcinoid Cancer Foundation, who has dedicated over 50 years to the advancement of the field of carcinoid cancer treatment. So much of what I read was written by him. It was an honor and a privilege to thank him face to face for essentially saving my life before I ever met him during a consultation I had with him in March of 2015.
Knowledge is not only power, it’s life when it comes to the rare condition of carcinoid cancer.
Which brings me back to my opening statement. I am indeed in a good place now.
Grateful, Positive, Empowered and Looking Forward to the Future!