Symptoms don’t always help
The focus of this week’s #30NETfactsin30days posts is largely on the symptoms of the disease. There are problems with that focus. The first is that many patients never exhibit any symptoms at all until the day they are faced with an intestinal blockage or some other life-threatening situation. Not every neuroendocrine cancer appears to secrete a hormone, so finding one based on looking for hormone issues does not always work.
We need your help, too.
And even those that do secrete hormones can go for years without producing more than vague, irritating symptoms that people learn to cope with. That vagueness also complicates things for doctors trying to decipher what is going on. Lots of things can cause intermittent bouts of diarrhea, lots of things can cause flushing, lots of things can cause wheezing…
The specialist problem
To further confuse things, patients may see one specialist for one set of symptoms and remain mum about those same symptoms with another specialist in another field. My wife Jane, for example, talked with a gastroenterologist about her stomach issues and her gynecologist about her hot flashes. The one told her she had irritable bowel syndrome, likely brought on by the stress of teaching high school students, since it seemed to subside over vacations. The other blamed that flushing on early menopause.
…many patients never exhibit any symptoms at all…
That Jane also suffered from regular bouts of insomnia she largely kept to herself–blaming her love of coffee and tea for it–compounded the problem. All those things taken together scream NET cancer to me today. Hindsight is a wonderful thing. But none of her doctors had the ability to put all those symptoms together because they were only seeing parts of the story.
Zebra symptoms
Even had they seen all of her symptoms, though, they still were unlikely to come to the conclusion she had neuroendocrine cancer. As Jane’s heart surgeon said to me the night before Jane died, the first thing we teach young doctors is, when you hear hoofbeats think horses not zebras. That means look at the most common diagnosis for a set of symptoms and treat that first. Only if that treatment does not work should you think about other causes–and the next disease on the list is unlikely to be a zebra.
… they were only seeing parts of the story.
“Unfortunately, a zebra killed your wife,” he finished.
A zebra among zebras
And neuroendocrine cancer was a zebra even among zebras for Jane’s doctors. It was considered thought so rare that Congress eliminated funding for research into it in 1968. They didn’t come back to it until 2008, when they funded a conference of doctors with an interest in the subject to talk about what they would do if there was federal money to fund something.
…the first thing we teach young doctors…
Congress funded actual research for the first time since 1968 in 2010.
If you don’t suspect it…
It was thought so rare that apparently medical schools didn’t it mention it much, if at all. Even today, I regularly hear from both doctors and nurse practitioners the same kind of thing Jane’s doctor told us the day she was diagnosed: “I’ve never heard of this form of cancer.”
…a zebra even among zebras…
The Carcinoid Cancer Foundation has a wonderful aphorism about NET cancer that applies to almost any relatively rare disease: “If you don’t suspect it, you can’t detect it.” It’s the absolute truth. No medical practice orders tests for a disease unless they have strong reason to suspect that disease is present. But it is impossible to suspect a disease you’ve never heard of.
Raising awareness of symptoms
Part of what the #30NETfactsin30days campaign is about is raising consciousness among the doctors and nurse practitioners who are most likely to encounter neuroendocrine cancer at an early stage when swift intervention could make a real long-term impact on the lives of patients.
“I’ve never heard of this form of cancer.”
But part of it is also about reaching out to potential patients. Jane had symptoms for 30 years before diagnosis. She was in superb physical shape. She played singles tennis every morning of every summer up until the summer of 2009. She often played another couple of hours of doubles with men in the afternoon. We walked 2-5 miles every day from spring to late autumn. We frequently went on 20-30 mile bike rides on ancient steel-framed bikes. She had the same body fat as an elite female athlete.
Looking too good to be sick
Despite all that, she had regular bouts of diarrhea, painful stomach bloating if she ate later than 5 p.m., frequent insomnia, blood pressure low enough that she sometimes passed out getting up from the toilet, hot flashes from her late 30s to the end of her life that never went away, a persistent rash on her face she covered with make-up and never gave a second thought to…
Jane had symptoms for 30 years…
She looked too healthy to be sick, felt too healthy to be sick. She didn’t look or feel like cancer was eating her alive. But it was. And it wasn’t all in her head.
The price of ignorance
We need better ways for doctors to communicate what they are seeing to other doctors; better ways to coordinate diagnoses; better ways to bring the supposed zebras to the attention of the frontline doctors and nurses who see patients earliest and most regularly.
She looked too healthy to be sick…
The consequences of our ignorance are enormous for both patients and their loved ones. Jane died less than four months after being diagnosed. By the end, she’d been stripped of every ounce of human dignity she possessed. The person I was died with her that night. The future we dreamed of died that night.
We need to do all we can to prevent that from happening to anyone else. I work at it as hard as a broken soul can. I’m not enough. We need your help, too.
