WORLD NEUROENDOCRINE CANCER AWARENESS DAY
(This was originally wrote and published by Jake, on his Facebook, for World Neuroendocrine Cancer Awareness Day on November 10, 2021)
Hi Friends! Today is World Neuroendrocrine Cancer Awareness Day. Having cancer is a weird, strange experience…and just talking about it can be one of the most challenging dimensions of the disease. It’s awkward. People don’t know what to say to me and I don’t know what to say to people. I’m five months into this ride, having been diagnosed with Stage IV Neuroendocrine Cancer (NET) earlier this summer, and I wanted to share some thoughts.
My tumor was discovered on an early Sunday morning in June in Women’s Methodist’ emergency room. It was the second time I had been to the emergency room for abdominal pain in 14 months and, unbeknownst to me, would be the first of 11 days spent in the hospital in June.
When the ER doctor returned to the room with my scan results and broke the news, it didn’t quite click in my head. I remember thinking, “A mass…on my pancreas…that’s no big deal, right?”
“Just need some antibiotics, right!?”
Cancer will have you swimming in a sea of denial, even when you are clearly in the thick of it. The mind retreats to “that won’t happen to me” even when it is currently happening to you.
I was immediately scheduled for surgery on June 22nd, just 18 days after the tumor was initially discovered. Despite knowing I was due to have major surgery, I had it in my mind that I was going to knock the whole process (surgery, in-hospital recovery, at-home recovery) out of the frickin’ park. I was going to be a shining beacon for anyone going through what I was going through. 8 week recovery? Psh, I’d be back in the gym in a month, hitting the heavy bag like a mad man and generously sweating all over the place.
I couldn’t have been more wrong.
I am now 16 weeks post-op and, sometimes, the life I was living earlier this year feels like a memory plucked from a separate reality. As I slowly climb my way back to being the Old Jake, I need to constantly remind myself that I am playing the long game. I am willing to sacrifice a few months of pain now if it means a happy and healthy life years from now. That’s an easy choice. But still, when you’re sick and unable to do what it is you want you do, it’s hard not to feel like life is very casually passing you by. Your friends continue on with their lives. The party goes on without you. Cancer doesn’t care about your plans.
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The first time I met my oncologist, she told me that because the cancer had traveled from my pancreas to my liver via my bloodstream, I was stage IV.
She said I would have this disease for the rest of my life. No cures or remissions. I think that looks more brutal in writing than it actually felt at the time. I’m not sure how other people react when they are told they are stage IV, but for me (and my wife and mom, who were in the room with me) it was a stunned silence. I think it was the first time I’ve ever been stunned silent.
At the end of the day, I guess I’m not nearly as tough as I thought I was in certain regards, but tougher than I ever imagined I could be in others. I am not a shining beacon. I am not a valiant fighter. For nearly four months, I have been a rag doll in the mouth of a canine. But, I think that’s okay. You don’t need to display valiancy to be a fighter. Sometimes ‘fighting’ is merely getting out of bed and brushing your teeth. It’s not pretty, and no one is going to make an inspirational documentary about it, but it’s still fighting, damnit.
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Here are some facts about NET.
The official ‘color’ for NET awareness is zebra stripes. Why? In medical school, students are taught that when they hear hoof beats they should think horses, not zebras. In other words, look for the most common explanation to a problem. In the cancer world, neuroendocrine tumors are the zebras. Represented by this analogy because of their rarity, neuroendocrine tumors make up just 2% of nationally treated cancers.
There are 12,000 new NET diagnoses every year. The American Cancer Society estimates that about 4,200 people in the US will be diagnosed with a NET that originated in the pancreas in the year 2021 (hey! that’s me).
90% of NET patients are incorrectly diagnosed. The most common misdiagnosis are chrons disease, pancreatitis, IBS, and ulcers.
The average time from initial onset of symptoms to proper diagnosis exceeds five years.
Unlike most cancers, which originate in one specific organ, NET can occur anywhere in the body where there are neuroendocrine cells.
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Go get screened for cancer. Encourage a loved one to do the same. Early detection saves lives.