Based on what I know now, it’s likely this journey actually started quite a while ago. I’ve had vague stomach issues for about 12 years now. Bloating that comes and goes, sensitivity to certain foods, some mild nausea, occasional diarrhea, etc. Pretty generic and standard stomach stuff that could mean hundreds of things or nothing at all. Over the years I’ve had a variety of tests including endoscopy’s, blood tests, allergy tests, a colonoscopy, and have even eaten radioactive eggs for a gastric emptying study (more on that some other time). Originally diagnosed with gastroparesis (another rarity), doctors felt over time that my symptoms didn’t really fit and that IBS or just a general sensitive stomach was more inline with my vague symptoms. Over the years I’ve just learned to basically live with and ignore things for the most part, avoiding foods that seemed to set things off.

Sometime around fall of 2017 I got a cold and then a sinus infection, a fairly typical pattern for me. This one really hung on though, a few months in I was still trying to kick sinus pain and a cough. After going to my ENT and an allergist, things seemed to get back to normal except for one new symptom I hadn’t experienced – facial flushing.

About 5 minutes into bike rides I would get a feeling of heat behind my ears and my face would get super-hot for a few minutes. I also noticed this flushing after eating or drinking certain items – drip coffee without food, spicy peppers and cured meats just to name a few. I attributed these new sensations to getting over my sinus infection and for the first few months didn’t think too much about it.

As time went on, the flushing became hard to ignore, it was just such an odd sensation. Follow-up visits to the ENT along with a breathing test suggested that I might have vocal cord dysfunction (don’t worry, rare), which could contribute to what I was feeling. A visit to a specialist sent me away with some breathing exercises and back to trying to ignore the occasional flushing episode.

One day we were at the Apple store after a spicy, but delicious lunch when Jenny looked at me with a sense of panic. “Are you OK” she asked. I said “yes” and that I was just having one of my flushing things. Apparently my face was beet red and my eyes were bulging out of my head. Placing Jenny’s Apple watch on my wrist confirmed what I was feeling with a resting heart rate around 115 BPM. Suddenly things began to feel more serious, so I did what I always do, start researching.

Google to the rescue

Taking all I knew about my symptoms, I turned to the all mighty Google for answers. Most results from trusted medical sites returned the same vague answers that my vague symptoms suggested. Not much help. But one search around some of the foods that triggered things along with flushing brought up an article from the Mayo Clinic on Carcinoid Syndrome. From the little I read (I was too scared to go into details), carcinoid was extremely rare, and while my symptoms weren’t exact, I brought the info to my GP doc. She agreed that it was rare and highly unlikely but ordered a blood test to check for high serotonin levels. The results came back. Serotonin levels 10x normal. I was cursing and thanking Google in the same breath.

Months of blood tests that conflicted with urine tests, one full-body Octreotide, and one CT scan later, they finally found something. A small tumor sitting outside my intestine behind my bellybutton.

Surgery

With the tumor identified and a specialized surgeon in Denver on board, a surgery was scheduled for the end of September to remove the tumor.

Pathology showed the tumor to be well-differentiated, which from what I understand means cells do not look abnormal and that it is very slow-growing. In addition, they tested the rate of cell division, which was zero (they worry more if it’s more than 5-6).

With the tumor removed fully, everyone was optimistic that while not totally inline with my symptoms, the carcinoid scare was over.

The new hotness

Before leaving the hospital, I swore I had another flushing episode. It can take time for chemical levels to come down, so it was decided I’d get a blood test 1-month post-surgery. I’d also get set-up with an oncologist who would monitor things for years to come. Throughout the next 30 days, I had many more flushing episodes and an uneasy feeling about where things were headed. Blood test ordered. Results in. Serotonin levels? 10x normal. No change from before. Speechless.

I think the results were just as shocking to the docs as they were to me. The next step was a hyper-specialized scan – a full-body PET scan with a gallium tracer. How specialized? Only FDA approved in the last two years, this scan has to be specially created by a local lab and only has a half-life of one hour. It’s one and only job – to locate neuroendocrine tumors. You can read more about the scan here if you’re interested.

The scan did its job, picking up tumors the other scan had missed including one in my small intestine, and around 20 in my liver. I was mad at the scan but at the same time grateful. Without it I’d still be a medical mystery and my treatment delayed further. This scan and the technology behind it also offers promise of targeting the tumors directly with other isotopes using the same method used in the scan.

So why did it take so long to get a solid diagnosis? That was the question on my mind as well as many around me. Well, as I’ve said before, carcinoid is rare, but I wasn’t aware how rare and hard to find it really is.

I’m a zebra!

Zebras have always been my favorite animal, I’m not sure why. Often called the zebra of the cancer world, carcinoid tumors often go un-diagnosed for long periods of time, typically 10-12 years or more. At first, they produce little to no symptoms whatsoever, and then produce very vague symptoms like mild stomach issues. All this to say that carcinoid tumors are rare, much more than I initially realized. So why the zebra reference?

In medicine, the term “zebra” is used in reference to a rare disease or condition, like Neuroendocrine (NET) Cancers.

– Medical students are thought to assume that the simplest explanation is usually the best, i.e., it is usually correct to look for common rather than exotic causes for disease. Doctors learn to expect common conditions, hence the phrase

“If you hear hoofbeats, think horses, not zebras.”

But zebras do exist, and the unlikely can and does sometimes occur.

– International Neuroendocrine Cancer

So I get to be a zebra. I’ll be honest, I thought it would be more fun. Like being Marty in the movie Madagascar. Instead, it’s like I’ve won the lottery, just without the cash or excitement. Here’s some stats to give you an idea of what zebras look like:

• The National Organization for Rare Diseases says 27 new cases per million diagnosed in the U.S. per year.
• Of these, only about 10% will develop carcinoid syndrome.
• Tumors of any kind in the small intestine are rare and comprise only 1% of all the cancers of the gastrointestinal tract (where mine likely started)
• Neuroendocrine tumors make up just 2% of nationally treated cancers

Choosing optimism

Not surprisingly, when I got over the initial shock of the diagnosis, my thoughts jumped to “why couldn’t they find this earlier? Why didn’t I find this earlier?” Learning about the “zebra” helped me to (mostly) put those thoughts out of my head. I’ve instead chosen to be grateful that it’s been found. That I live in a day and age where the technology exists to find such a rare thing. That the medical field is moving rapidly to find better treatments and cures. That the internet exists, that I stumbled across the information and that my doctor listened. That I’ve started treatment. And most importantly, that I have an amazing life, surrounded by amazing people.

I know that I’ll be going through all the emotions (I already have), but I’m going to do my best to greet each day with optimism, happiness and a gratitude. I’m asking you to do the same. I need your best to smile and your laughter to fill me with joy.