Today is neuroendocrine tumor cancer day. I will be wearing a zebra ribbon and my “i am a liver” bracelet (which has been newly engineered) and trying to avoid any awkward conversations. Which probably isn’t the purpose of NET Cancer Day–the purpose is for people to know about it and diagnose it and donate so there will be cures, maybe, and so my blog (and I) can live on. Still, there’s the reality of trying to explain the meaning behind the zebra ribbon and neuroendocrine cancer without getting too personal. I’m sure i’ll think of something if anyone asks. And then i’ll probably blog about it.
I have to admit that while I do want to support things NET-related, I feel a little uncomfortable about advocating for a cause i’m not sure I agree with. Apparently, there’s a saying in medicine, “When you hear hoofbeats, think horses, not zebras.” That’s the idea behind the zebra ribbon–neuroendocrine tumors are rare, so they usually go a long time before they’re properly diagnosed, at which point they’ve gotten really large, or spread, and generally caused more damage than they would have if they were caught/diagnosed early. NETs, in general, grow slowly, so there’s time to cut them out before they get really bad.
In theory, this makes sense. In practice, I can’t imagine what the medical system would be like if doctors looked for zebras all the time. I’m taking a healthcare policy class so i’m very aware how much medical costs have been skyrocketing in recent years. If all doctors ordered the barrage of tests necessary to find every single rare condition out there with every patient, medical costs would get even more out of control than they already are. Ideally, we want health outcomes to go with those higher costs. I’m not sure that testing for and subsequently diagnosing more rare conditions would give us better health outcomes. The research I’ve read says more medical spending doesn’t necessarily translate to better health. I guess it depends on the measures they use for better health. A lot of money has been spent on my medical care and I feel much better now than I did last fall. But i’m not cured and I have a long road ahead of me and an uncertain prognosis. So, i’m not sure if I fall into the category of having better health even though I feel better–especially when i’m not on chemo.
I do wish that I was diagnosed a little earlier, though. But i’m glad it happened when my parents were present, when I was in LA instead of Chicago, when I was already committed to going to grad school and not working. In that respect, it couldn’t have happened at any other time.
I first started seeing persistent symptoms last March or April (2010), a full 6 months before I was diagnosed. It was just heartburn, so the doc prescribed a heartburn med, and that was that. I wasn’t satisfied–I even remember asking, “So, it’s normal to just wake up one day and suddenly have really bad heartburn all the time?” And the doctor said, “Heartburn is very common.” And then she gave me a statistic, like, 50% of people suffer from heartburn, and then I didn’t know what to say after that. I felt uncomfortable with it. It didn’t seem normal to me. But why should I expect to be any different than 50% of the population, even thought I was 24 and healthy?
So I took the pills for awhile, but they didn’t work that well, and I didn’t really like taking a drug for something as minor as heartburn. They also caused diarrhea, but in hindsight, that was probably more a symptom of the tumors (which over-produce gastrin, or stomach acid) than a side effect of the heartburn meds. I had other weird symptoms, too, like persistent indigestion and bloating, and bubbles in my throat that wouldn’t go away, and the doctor just attributed it all to mild GERD. So I altered my diet, cut back on alcohol and caffeine and oil and grease, and tried every heartburn remedy I could find on the internet (ginger, cardamom, peppermint…) to no avail. I got heartburn just from drinking water. It didn’t seem normal.
By the time the more serious symptoms started in late July I was in the throes of moving from Chicago to LA, so everyone said my persistent nausea and vomiting were probably stress. Or being pregnant–but I took like 5 pregnancy tests and they were all negative. I had already stopped working and was on a gap health insurance policy, so I couldn’t very well see a doctor, and it was awful, but it was just nausea and vomiting–how bad could my condition be? And it didn’t seem all that easy to diagnose/treat. So when I finally saw a doctor in late September, at first they took me off birth control pills and monitored my diet and sent me to a therapist for stress, but it was still less than a month before I was diagnosed. I am fortunate. The doctor told me later that every more experienced doctor who she asked about my symptoms said I was suffering from stress, but she did all the blood tests anyway just to make sure it wasn’t anything else. And then my liver tests were very abnormal. And then and ultrasound and CT-scan found the tumors. In hindsight, I think I dealt with the the diagnosis so well, in part, because I could feel that something serious was going on. I did a lot of crying about my heartburn and my nausea and vomiting in the 6 months leading up to my diagnosis, so, in a way, I sort of already knew and was dealing with it preemptively.
The tumor in my pancreas was huge and there were tumors everywhere in my liver. If it had been caught 6 months earlier, it probably wouldn’t have made much of a difference. I was even having weird blood sugar issues starting 3-4 years earlier–maybe that was related? The point is: It could have been growing for most of my life.
So that’s my story. I’m not sure if it helps or hinders my zebra argument. I think zebras should be looked for at the appropriate time. In my case, I’m not sure it would have been appropriate to send me for tests or to see a specialist when my only symptom was heartburn–even though I felt like it was something worse than the doctor thought it was. The “appropriate time” is a matter of judgement more than anything else. And it doesn’t really lend itself to a catchy saying to teach new doctors: It’s not “When you hear hoofbeats, think zebras.” It’s more like, “When you hear hoofbeats, use your judgement to determine whether it’s a horse or a zebra.” Judgement is something you acquire through practice, not learn through a clever quote.