He was feeling fit and strong, sleeping and eating well, and it was a routine medical examination. He didn’t know the physician, and she was young. He hadn’t undergone many tests in a few years, so when she ticked off the lab work that is standard at his age, he said “sure” and that was that.
Insurance would cover the costs. The doctor was recommending it. So why not?
Three days later he received a phone call, and an alarming one at that. One of the tests produced abnormal results and the doctor said it was critical he see a specialist. There was a high probability of the dreaded C word.
Everything spiraled downward from there.
First, there was shock, then bewilderment, then enormous anxiety – and of course – phone calls to friends and family, the search for a specialist in the field, and hours spent on the internet to see just how bad things could be.
Knowledge is Power
As his friend, I was part of that research process, and we quickly discovered that this controversial diagnostic test has a high rate of false positives, not to mention causes other than cancer.
Neither of those facts were presented to him as the young doctor rattled off the “standard tests” that he should have. Nor did she offer the information when delivering the test result by phone.
Fast forward two months, many sleepless nights, a follow-up exam with a specialist who proposed even more frightening surgical intervention – merely as a precaution – additional research, and ultimately, my friend’s decision to do nothing.
Enter common sense.
Enter potential patient as consumer, with the necessity to be well prepared.
Enter our right – no, make that our requirement – to challenge our physicians and make our own choices. Reasoned choices for our age, our lifestyle, our familial and financial situation.
Doctors are Human, Too; Tests Are Not Infallible
False positives are not unusual in many tests in a variety of areas of medicine. And there are some risks with any surgical procedure. This is part of the reason I declined amniocentesis when I was pregnant – twice – to the shock of my doctors. I suspect they aren’t used to someone saying no, even if no is what feels right – not out of fear, but legitimate doubt, insufficient information to warrant the test, or whatever your gut is telling you.
Doctors aren’t gods. We own our bodies.
I’ve had my own run-ins with false positives, which I will clearly differentiate from situations that are potentially life threatening, and the need to get definitive answers through surgery. I’ve been there as well – with a physician I knew and trusted, and I understood exactly why the course he proposed was best.
In another instance, like many women, a false positive on a mammogram caused extreme anxiety which lasted some two weeks until I could see a specialist. Additional scans and exams proved the first result to be a false alarm, which I know now is very common.
But how many men and women agonize while waiting for second rounds of testing, without being told the false positive rates? And what about picking up costs that insurance (even if you have it) won’t pay for?
How Common Are False Positives?
A sampling of diagnostic tests with a high incidence of false positives?
Here are a few I dug up in 10 minutes on the Internet in a very pointed article from Forbes, including a slide show of top false positive offenders. Note that mammograms (for the women) and PSA (prostate for the men) are frequently associated with false positives.
In fact, according to the Forbes article:
The doctor who discovered PSA, Richard Ablin, created a furor this year when he said, in a New York Times op-ed, that as a screen of healthy people the test does more harm than good.
Nothing like turning over our most vulnerable selves to those who no longer touch, explain, or offer options! Instead, prevailing practice prefers to scan, stick, and scare – without providing complete information.
I’m a believer in preventative measures, for example vaccines – including for HPV. I’m not saying I believe we should decline diagnostic tests, but we do need to recognize the changing face of medicine, and our responsibility as educated consumers.
And might our physicians learn to treat us like human beings, and provide greater context for their recommendations?
Great Post!!! My little guy (born with Down Syndrome) suffered from multiple seizures for 2 years before we found out he was allergic to gluten. He was on 3 anticonvulsants simultaneously which turned him into a zombie. I went to a conference on D.S. and a naturopath casually mentioned some kids with D.S. have problems with wheat. We adjusted his diet, the seizures ended, and his doctors couldn’t believe it. He is now a healthy, rambunctious 4th grader at our local school.
It is so important to do your own research and to realize that it is ok to say “no” to your doctor. Doctors can only offer you their opinion. We have to stop expecting them to know everything.
With my health issues this summer I’ve been going round and round, pondering issues about meds/diet/exercise and which symptoms are part of what. What can I control and what is out of my control?
“Doctors aren’t gods. We own our bodies.”
I LOVE this line. We need to be less complacent and more pro-active with our own health. We need to question and use all the resources available to us. When I didn’t like what my doctor told me (it just didn’t sit right about a medication I was on) I went to my pharmacist. Oh! So much more helpful.
You said it best right here. Amen, sista!
@ccjach – Thank you for joining the conversation, and welcome. What an experience! It certainly sounds like you understand this dilemma firsthand. Good for you for continuing to explore options, and for the happy result.
You raise an important point, Jane. A good pharmacist can be a great resource. And establishing a personal ‘customer’ relationship there can be helpful in a hurried health care system in which doctor-patient relationships are increasingly rare.
This brings up so many important points. It is important to have dialogue with your doctor, it is important to see your physician regularly so that they may stay in touch with your situation and your symptoms more consistently.
Doctors are not infallible, and there are so many variables in medicine.
I think that some surgeries of convenience are becoming way too common. But I don’t just blame the physicians, I know too many women who have had major surgeries for convenience.
I had a friend who had years of a catastrophic sinus condition. He missed a lot of work and the quality of his life was close to ziltch. I asked him if he was seeing the best doctor he could, he certainly had one of the best health care benefit packages to support that. And he said, how do I know. This from a fellow who ran very sophisticated teams that handled complexity and strive with ease.
So he did his research and found the expert in this part of the the planet. It was just friggin’ polyps. They were excised and he felt better than he had in decades! Is your doctor good enough? Is it worth your time to find a doctor you respect and who has world-class skills.
Don’t even get me started talking about the stand-in doc who diagnosed Mom’s pneumonia as “possible cancer”. What a tool!
How terrifying. And it seems that the endless amount of information on every physical condition available on the Internet can often compound the terror one might experience after getting such a misdiagnosis. Thanks for contributing positively to the conversation.
“Doctors aren’t gods. We own our bodies.” Absolutely. And an important reminder.
The Internet really is a double-edged sword, isn’t it, Kristen. It certainly adds to hypochondria, or lesser versions (old fashioned worry), but it’s also potentially a source of enormous information. We need to hang on to common sense and perspective. Not always easy.
The mathematics behind false positives (and false negatives) is quite subtle. An 80% accurate test that comes out positive can mean that you have a 1 in 5 chance of really being positive so it really helps to have the statistical background. If you google bayesian calculator, the Fullerton web app lets you compute the odds you have a testable condition if you have the false positive and false negative rates.
Wonderful resource, batticus, thank you.
I wish the problem were just doctors. It’s so much bigger. The problem is the whole thing. The whole colossal mess of a system we have here, in which we all are implicated. There are thousands of 90 year old, vegetative patients undergoing painful, expensive, invasive surgeries to prolong their lives by a few months, etc. Sometimes I wish we could just shut the frigging thing down and start over. And begin with the teaching that death is part of life, and gives life meaning. And that sometimes the terror of death is the terror of not having lived.
Wolf, I suspect you have an old soul, and a European spirit. You bring us back to essentials, with such lucidity.
Unfortunately I think many doctors are walking the “lawsuit line”; practicing medicine out of fear of being wrong rather than simply treating each patient with the humanity of knowing they can speak plainly. They order unnecessary tests to cover themselves “just in case,” or because a patient is afraid.
It is a cultural phenomenon. When we blame, we live in fear. We lash out and see each other as the enemy. When we each and every one of us steps up and “owns our body” we can live together in harmony. Treating doctors either as “gods” or “the enemy” serves no one. Least of all ourselves.
I agree with you, Rebecca, and as Wolf said in his comment re the medical profession – ideally, we’d start all over. Concerns over malpractice in a litigious society certainly tangle up our physicians, add to unnecessary cost (and worry, and discomfort), and I might add that I believe pharmaceutical advertising direct to the consumer hasn’t helped.
One more thing Rebecca – I do believe that it is unacceptable for physicians to rattle off a list of “standard” tests without any explanation. In the example of my friend, I believe this was inexperience on the part of the doctor. But I’ve been through this with physicians myself – in their 40s and 50s.
I’m concerned for what we’re teaching our medical students relative to the humanity of the person they’re dealing with, and also, the need to provide context for diagnostic procedures. Forget “empathy” for the moment. If doctors wish to avoid potential malpractice, a little bit of information goes a long way.
Avoid doctors and pills if at all possible. They’ve never done me one bit of good. I’ve been lucky — they’ve helped a few people I know. Accidents and mechanical things– they’re pretty good at putting folks back together.