Stage 0 to 4 in seconds.

Prognosis: Undetermined

Neuroendocrine Cancer, in Stages…

I went to the ER in June 2020 after days of intense fatigue and sudden, severe stomach pain.

The ER doc ordered an ultrasound to start off, and the ultrasound technician seemed to know what she was looking for. She moved her probe around the source of the pain, and then went further and further, homing in on one spot in particular. Even after I explained that wasn’t where I was feeling pain, her probe stayed put. A CT later and it was confirmed: they’d found a ‘mass’ in my mesentery. A tumor, in layman’s terms. An appointment was made with a surgeon, who described a lesion on my liver that could be related to the mass, and informed me that a biopsy would be needed. A week or so later I had a diagnosis: ‘carcinoid cancer’. 

The tumor was what was known as a neuroendocrine tumor. It was a very rare type of cancer - just 12,000 people in the United States are diagnosed with a NET each year, and around 175,000 are living with the diagnosis. (Compare that to approximately 1.9 million diagnosed with any type of cancer each year, and 284,000 diagnosed with breast cancer, the most common type). 

The surgeon had explained that he wouldn’t be able to do the surgery personally, because the tumor was surrounded by blood vessels and in close proximity to an artery - a thoracic surgeon would likely be needed, and our local hospital just doesn’t have the personnel or equipment for that. He referred me to the cancer center at the University of Rochester, where I’d meet with another surgeon about a week later. 

That doctor confirmed the tumor, as well as the cancer in my liver, were definitely neuroendocrine cancer, and she informed me that, in addition to the above, they’d also found it in my small intestine - that’s where she suspected it all began. 

“Cancer almost never starts where we find it,” she told me. “It spreads.” 

I asked her the question that is almost always the first question everyone asks me: “What stage is it?” She visibly winced. Before she told me, she said, she needed to explain how the ‘stages’ of cancer work: stages refer only to how far the cancer has spread. Is it ‘local’, or is it ‘distant’? All ‘stage IV’ refers to is whether it has metastasized to other places. 

“So… what’s mine?” I finally asked. 

“Yours is stage IV,” she told me reluctantly. She then explained that NETs are a slow-moving type of cancer, and that many of those who are unable to have the cancer resected surgically go on to live with the disease. 

Surgery was scheduled for August. The goal of the procedure would be to resect the mesenteric tumor, resect the cancerous part of my small intestine, and resect the lesion on my liver. In the event that it had spread too far for that strategy to be successful there were medications that they could try and - possibly - radiation, in the end stage, to burn out the cancer. 

I quickly took to the internet, reading about neuroendocrine cancer and carcinoid cancer - another term for the type of cancer I’d been diagnosed with, and often used interchangeably - researching the possible surgical outcomes, the expected prognoses… whatever information I could get my hands on, really. 

At one point I read about something called carcinoid crisis, and it scared me.

I read that carcinoid crisis could turn a routine surgery into a fatal one - but that this was rare. I later asked my surgeon about it, and she told me that, while it was a risk, the idea was that my liver would protect me from that end result. 

(That my liver was cancerous was definitely something in the back of my mind…)

Other risks of the surgery itself included the possibility of the complete loss of my large intestine, which could mean that I’d be left with a need for colostomy apparatus and, possibly, a feeding tube. I was clear with my surgeon that wasn’t something I was interested in. It wasn’t something she was interested in either, she advised me, as it could, in turn, lead to other complications. Still, it was a risk. 

Also a risk: that the tumor wouldn’t be able to be removed due to its proximity to arteries and veins. 

“Sometimes we can’t even tell that we won’t be able to finish the operation until we start the operation,” she told me. “We might go in there and decide it was for nothing. Then, when you wake up from the anesthesia, we give you that piece of bad news…” 

Her observation proved to be an accurate foreshadowing, as it would turn out. My surgeon visited my room the day after the surgery to share the results of the operation. Sure enough, they’d determined that the tumor itself was inoperable - but not before trying to operate for hours. The mass was bigger than they’d thought, and closer to the artery that they’d anticipated - several surgeons had joined her and spent much of the evening and into the night ‘manipulating’ it - but after all that they’d concluded that removing it would cut off the blood supply to my colon, likely requiring the need for a full colectomy. She reminded me that we’d talked about that in the past and we’d both agreed that it wasn’t something either of us wanted. 

“Quality, not quantity, is what you told me,” she said. 

She didn’t need to remind me. (I may have also told them that, if they needed to put in a feeding tube, the first thing they should feed me is cyanide. To this day I’m not sure if I spoke those words as the anesthesia kicked in, or if I only dreamed that part, and I am afraid to ask…)

There was some good news: they were able to resect some of the tumor in my small intestine, ensuring that the mass there didn’t continue to block digestion, one of my surgeon’s chief concerns going in. And while they were in there they removed my gall bladder - the medication I would need to take for the rest of my life has had a history of causing gallstones, and the gall bladder often needs to come out later, anyway. 

There was also more bad news: they’d found not one, but two, lesions on my liver - the PET scan had initially only revealed the one. On that basis, as well as the fact that the tumor was inoperable anyway, they’d decided that the risks of further surgery would likely outweigh the rewards. My oncologist would later tell me that additional tests ordered by the surgeon had come back, and the cancer had spread to my lymph nodes, meaning surgery on my liver wouldn’t actually have stopped the spread of the cancer, anyway - no surgery would, at this point. 

Still, I was alive, laying in a hospital bed… for me, who’d already been afraid of the risks, the moment that the representative from the anesthesiology team said something to the effect of “Sure, you could die, but our job is to bring you back from that - “ I’d already said some goodbyes before I went in… that had scared me. 

So, really, just to have made it through the surgery was a positive for me. 

Continued below…

Continued from above…

As I mentioned above, Neuroendocrine cancer is a ‘slow-moving’ cancer. The 5-year survival rate for liver cancer, according to the American Cancer Society, is just 34% at best, and just 3% for those with ‘distant’ metastasis - i.e. spread to multiple organs, like mine. But for NET cancer, the 5-year survival rate for those with distant metastasis is 67%. That means two-thirds live more than five years. 

I belong to several Facebook support groups for NET patients, though, and the stories shared there are a constant reminder that nothing is certain. Patients who went into their NET cancer diagnosis thinking they’d be alive for years report being given bad news - a shutdown of a liver here, newly-discovered metastasis after a scan there - and, then, they are gone within months. People who were told they’d likely live less than five years, on the other hand, are sometimes sharing progress updates a decade later. Prediction is impossible - my own doctors can’t even agree, with one citing the five-year survival rates, another telling me about someone I’ve nicknamed her ‘10-year miracle patient’, a third telling me I’ll likely live as long as I would have without cancer, and the fourth reminding me that, if it metastasizes to my heart, “it could be all over in as little as two weeks’ time.” 

What the medical professionals at the University of Rochester and Boston’s Dana-Farber Cancer Center, where I went for the proverbial ‘second opinion’, all agree on, is that the goal of cancer surgery, and cancer recovery, should be to live as full a life as possible. Neuroendocrine cancer doesn’t improve for most - its progression and prognosis only worsens over time. “Live life the best you can, while you can,” an oncology social worker tells our Zoom support group. 

That is exactly what I intend to do. 

In embarking on my road trip, I am searching for that quality over quantity. That’s because, with my cancer, quality of life issues tend to get in the way of living life as time goes on, especially toward the end. My fellow NET patients report symptoms that keep them isolated, spending more and more of their time at home as their disease progresses. Chronic pain. Chronic diarrhea. Chronic fatigue. The list goes on and on. 

I experience some of those symptoms now, albeit on a less-debilitating scale. But it’s anyone’s guess as to when it could get worse. The medical journals describe the final weeks of the life of a NET patient with terms like “perforation” and “strangulation” followed by “organ death”. Sometimes that takes years. Other times, it may progress in months or, even, weeks. 

So, for me, I will journey as far across the land as this disease, and my bank account, will allow, checking off ‘bucket list’ after ‘bucket list’ item as I go. 

I may see only a small portion of the US. Or I may see the entire country more than once, or maybe even other parts of the world.

But I will do my best to see what I can see, and experience what I can experience, before my journey becomes a race from rest stop to rest stop. 

My goal is to live so long that people see my ‘STAGE IV’ license plate a few years from now and say “How is that guy still alive?!” 

That would be a victory, for me. 

But I understand that I may fall short of that goal. And there’s nothing I, or even my very capable medical team, can do about that. 

So the real goal is to just live. 

To live as much as I can. To live as long as I can.

And, as a part of that, to see as much as I can, and to experience as much as I can, taking life one supercharged mile at a time.

Zebra Strong…

Neuroendocrine cancer is officially represented by the zebra ribbon. You probably don’t see it much, because the odds are approximately 1,874 to 1 that someone will be living with this disease, and a less than 12,000 to 1 chance that someone will be diagnosed with it in any given year. (For reasons unknown, the number of patients diagnosed with it is rising year over year).

“Zebra strong” is the cry of strength among those living with this disease. I see it a lot in our Facebook support group, and NET patients and loved ones often look for items that are printed with zebra stripes to go along with the theme. From kitsch to custom-made, if you see something in a zebra print, it may be a person living with this cancer, or someone who loves them. Or it may just be a coincidence - it’s hard to say. It’s like the color pink on a car, a color which represents both breast cancer and the Mary Kay salesperson of the year. (Or, someone who may just like the color pink…)

I can’t afford a $5,000 wrap for my Tesla, so it will remain the base color: white. But if I’m lucky enough to be able to embark on a road trip to show it off, you’d better believe that the mockup you see here will be prominently featured in my presence on social media. My Tesla is a zebra in disguise - in stealth mode, if you will. Much like this cancer metastasized through my body for years before making itself known when it was already Stage IV and there was nothing anyone could do to stop it.