For much of my career I admired Steve Jobs. He was an innovator’s innovator. He defined and personified the ideals of functional design and interface-first engineering. His work at Apple, NeXT, Apple again and at Pixar is unarguably legendary. He had focus, drive, intelligence and a gift for communication.
But in the last six months, I’m afraid that my opinion of Mr. Jobs has changed a bit. I do not question any of the facts or facets of him that I stated above, but I now also weigh in what most people don’t know about Steve Jobs: he went to great lengths to hide the disease that killed him.
Why has my opinion changed? Because over the last several months, after a number of tests, scans and consultations, I’ve been diagnosed with the same type of disease that killed Mr. Jobs. And trust me, if I wanted to have something in common with Steve Jobs, the disease that killed him wouldn’t have been my first choice.
I’d like to explain my journey in a little more detail. Not because I’m looking for sympathy, but because I’d like to help raise awareness of a pretty rare form of cancer that I’d simply never heard of before — and because knowing about it might help someone else that’s struggling to get a diagnosis.
So please allow me to get into a few more details.
The first sign that I had something going on, I totally missed. I’ve never been much for alcohol, and I probably averaged one beer or a glass of wine every six months. About eighteen months ago, I had a beer and my entire face turned bright red. It didn’t hurt and seemed like just a weird, one-time thing, but I stopped drinking alcohol completely after that. Frankly, I thought maybe I was sensitive to something that the beer was processed with — like yeast or mold. But I was wrong.
My second sign that something was wrong was because of my sweet tooth. I had a habit of eating a little candy bar or other chocolate after finishing dinner. In October of 2017, I started having stomach pains about 45 minutes after eating dinner. And by stomach pains, I mean it felt like I’d been kicked in the gut — but only for about two hours after eating. I experimented a bit and found that if I didn’t eat the chocolate, I didn’t have as many stomach problems. And being a guy, I tried everything I could think of before going to my family doctor.
When I finally gave in and got an appointment, my doctor listened carefully to my symptoms and sent me for an ultrasound. Being an information and knowledge advocate, I had a private bet with myself that the issues were due to gallbladder attacks. But the ultrasound came back negative for gallbladder issues. And instead they saw unidentified spots on my liver. My doctor told me not to worry, that lots of things that show as spots on the liver are benign, but he sent me for an MRI.
The MRI confirmed that I had “innumerable” spots on my liver, and the radiologist stated that he could not rule out cancer, which is when a whole new world opened up for me and my wife. We were referred to a gastroenterologist, who immediately scheduled me for an endoscopy and a colonoscopy. A week later, I was waking up from those procedures and the doctor told me that he had spotted a grape-sized tumor in my small intestine and that he believed it to be a Neuroendocrine Tumor (NET) cancer — sometimes called a carcinoid in earlier times. At that point, he scheduled a liver biopsy and that biopsy confirmed his diagnosis. We were told to get to an oncologist and it was there that our education really started. I should note that Mr. Jobs’ NET cancer started in his pancreas — the worst location. My cancer was in the most popular location as almost 70% of NET cancers start — in the mid-gut.
Because NET cancer is so rare (some authorities peg it as 2 people in 100,000, while others claim that it’s growing quickly due to unknown causes and now occurs in 5 people in 100,000), almost no one — even in the medical profession — has experience treating an actual NET cancer patient. NET cancers were only identified starting in about 1907, and then were not understood well. The old name, carcinoid, means “cancer-like” and implied that it wasn’t as dangerous as cancer. Unfortunately, that misinformation still persists in a lot of the medical community today, though it is changing.
Having gotten a diagnosis, and knowing now how rare the disease is, my wife and I did a lot of research in order to find doctors and hospitals that had experience with NET patients and treatments. There aren’t a lot of them. As an example, we found four doctors in Texas that the NET cancer group listed as specialists. Two of those were in Dallas, the other two in Houston. So we got an appointment with one of them (actually an oncological surgeon) and went in for a consult.
We actually hit the jackpot with Dr. C (as I’ll call him). He turned out to be extremely prepared, extremely knowledgeable and extremely good at communication with patients. He took us through my case (NET tumor originating in the midgut, and now at Stage IV — the last stage — due to it spreading to my liver with a large number of tumors now there) and talked specific treatment approaches.
Since I was (and am) at Stage IV, a cure was off the table. NET tumors shed cancer cells that can (and do) spread throughout the body. I had the original tumor in my small intestine, but I also had numerous lymph nodes infected with it — and the aforementioned tumors on my liver. Over the course of a month or so, we decided to have Dr. C operate in order to remove the original tumor and the infected lymph nodes. Not because it would prolong my life, but because if the tumor grew any more, it could block my intestine and emergency intestinal surgery is a Very Bad Thing. That operation also resulted in the removal of my appendix and gallbladder (due to the location of the tumor and the usual problems that NET cancer patients have with their gallbladders due to the cancer treatment), twenty lymph nodes (one of which was the size of a golf ball), and about a foot of small intestine and a foot of large intestine.
Unfortunately, about a week after leaving the hospital, I developed an abscess next to my small intestine that blocked my intestine and resulted in another hospital stay for eight more days. I should note that less than 1% of patients that have the same surgery develop an abscess — I just seem to keep winning the small-odds lottery lately.
I’m now on the mend, but with no real idea of my life expectancy. There are so few NET cancer patients that no one can accurately predict the timelines. Some people die in months after their diagnosis, some last a decade or more. It really comes down to how fast the tumors grow and where they attack the body.
So, in the interest of increasing awareness, let me hit a few things that should prompt you to ask your doctor questions if you see them. I need to preface this list with a caution, though. In medical school, doctors are taught the saying “If you hear hoof beats, think horses, not zebras.” That means that simpler, more common diseases and conditions should be the doctor’s first thought — not rare things that are usually not seen by a general practitioner. Unfortunately, NET cancer is a zebra. In fact, that’s the symbol that NET cancer support groups use — the zebra — because of this medical school chestnut. So I don’t want you to run screaming to a doctor if you see one of these symptoms. But you should be aware that this cancer is out there and if you see a few of these symptoms, it might be worth getting checked out:
- Flushing — as I described above. Usually happens with alcohol.
- Abdominal pain — particularly after eating. Like most of the other symptoms, this can be traced to indigestion, ulcers, etc. But it might be a sign in conjunction with other symptoms.
- Fatigue, mood swings, depression
- Unexplained weight loss
- Loss of appetite
And there are roughly 20+ other symptoms, depending on the original tumor site, that can also appear.
Additionally, I’d be remiss not to mention the fact that NET cancer is tough to diagnose. One reputable study reports an average of 5.9 years to diagnosis. As you would imagine, a lot of wrong diagnoses get made before the correct call is made. The top three misdiagnoses for NET cancer are:
- Irritable Bowel Syndrome (IBS)
- Depression / Stress
- Crohn’s Disease
One of the weirdest things about NET cancer is that the tumors actually produce hormones. Almost everyone that has the disease produces too much serotonin. That can go on to attack the heart, lungs, kidneys and brain. But there are up to 50 other hormones that can be produced by the tumors — and every patient gets a different, unique blend. It makes for weird side effects for those of us who have “functioning” tumors (tumors that produce hormones).
So what’s my point and why did I bring Steve Jobs into this?
It’s really simple. If Steve Jobs had been open and honest about having NET cancer when he was originally diagnosed in 2003, and if he had helped to raise awareness about the disease, I believe many more people would have been diagnosed earlier, perhaps before Stage IV. But because Mr. Jobs minimized his condition and obfuscated it, he never stepped up to the role of celebrity spokesperson for NET cancer. I think that’s a shame and a waste. Perhaps if he had, Mr. Jobs would have been known as more than an innovator. But that’s only my opinion.
As it is, I’m being very open with my condition in the hopes that perhaps someone else will be helped by reading about my journey. It’s nothing heroic or unusual. I’ve found that most people with NET cancer are open about their condition for the same reason — raising awareness.
Thank you for listening and a special thanks to those in the medical community that have helped me and my wife.
This is the first in a three-part series. Follow the series:
- Customer Friction Factor℠ and Healthcare Providers: My Experience and Recommendations
- The Gap in Healthcare Patient Information Transfers
Post Date: 2018-03-20