A few days ago a grieving mom in Shanghai, a good friend of ours, shared some tragic news with me: her teenage son had pancreatic cancer, one of the worst cancers. Her son was likely to die soon, if the doctor was correct. Only about 20% of pancreatic cancer patients live past 5 years. She was almost overcome with grief and had been crying for a couple of days. But even though she had gone to an expensive hospital that caters to foreign clients, she wasn’t sure she should trust the doctor. The mother called me to see if I knew where she could turn for help. She didn’t know that one of my sons happens to be a doctor treating cancer as a radiation oncologist at a leading US clinic.
I received a photo of the lab report for the boy and sent it to my son. The report mentioned a scan of internal organs showing no unusual problems indicative of cancer. There were no other symptoms, just a slightly elevated CA-19-9 antigen level, with a value of 45 instead of a desired maximum of 37.
My son explained that the CA-19-9 test is not supposed to be used for diagnosing cancer on its own. Absent other symptoms of cancer, its predictive power for cancer is less than 1%, he said. When he learned that the son was just a teenager, he said it’s even less likely to be pancreatic cancer because that disease is almost unheard of in young people. The mother’s grief was turned to relief.
I later found scientific publications confirming what my son had said. For example, see K. Umashankar et al., “The clinical utility of serum CA 19-9 in the diagnosis, prognosis and management of pancreatic adenocarcinoma: An evidence based appraisal,” Journal of Gastrointestinal Oncology, 2012 Jun; 3(2): 105–119; doi: 10.3978/j.issn.2078-6891.2011.021:
CA 19-9 serum levels have a sensitivity and specificity of 79-81% and 82-90% respectively for the diagnosis of pancreatic cancer in symptomatic patients; but are not useful as a screening marker because of low positive predictive value (0.5-0.9%).
Other articles indicate that diabetics, such as this young man, can have inflated CA-19-9 values (this applies at least for Type 2 diabetes–I’m not sure if CA-19-9 artifacts from Type 1 diabetes has been investigated), one of many possible alternative causes of elevated CA-19-9 values. Alternative causes for the elevated test result do not appear to have been considered by the doctor who terrified a mom by declaring that it was probably pancreatic cancer. Again, the test can be useful in tracking the progress of treatment of a known cancer, but should not be used to diagnose cancer in the absence of other evidence, as in this case.
The family still needs to be cautious and follow up on the possible causes of the inflated test result, but it was only slightly elevated unlike the much higher scores that I’ve seen reported in patients who actually do have pancreatic cancer.
To be fair, the doctor may have just said pancreatic cancer was one of several possibilities and he did ask the mom to go get further tests, but whatever he actually said or meant to say, what she understood was that her son probably had a usually lethal cancer. He also told her not to discuss it with her son or husband until they had done further tests, which may mean that he didn’t want the family to be all panicked for nothing, but the effect of that requirement was that the mother was all panicked and all alone, unable to discuss her grief with others.
In deep grief, the mother had been fasting and praying, unconsoled. After fasting, she felt she should turn to someone to get another opinion, but didn’t know where to go. She feels it was inspiration that she reached out to me, not knowing that my son would be able to help.
I am so grateful that my son was able to help bring peace to a mother who had been crying for a couple of days over the “fake news” she received from a generally good hospital. I suggest that here or anywhere else you should be open to the possibility that some doctors don’t know what they are talking about. And of course, that can apply to what I’ve said here. Do your homework, ask questions, and be cautious about what others declare.
I raise this story as an example of how much pain a misdiagnose can
cause. This was a minor case compared to misdiagnoses that lead to
unnecessary surgery, improper amputation, blindness, or death.
It reminds us that even experts can and often do make serious mistakes.
Misdiagnosis is a problem not just for physical health but also for our spiritual health. There are many who have been turned to unnecessary fear and even panic about Mormons and the LDS faith because of a local expert, often a pastor or religious friend, who declares that Mormonism is a cancer and that Mormons aren’t even Christian or don’t believe in the Jesus of the Bible. This kind of misdiagnosis is more outrageous than treating a mildly elevated CA-19-9 test as evidence of pancreatic cancer in a young person. The hear, anger, and confusion that has been caused by this persistent misdiagnosis truly is malignant.
There are LDS people who panic and abandon what was once a strong testimony over an expert somewhere who proclaims that Mormonism is a cancer or proven to be wrong. Sometimes the diagnosis is based on a rigged or improperly executed test, and other times there is a metric of some kind that points to a genuine problem, but a problem that should not be lethal to a testimony. Such problems can be due to the confusion and errors that always happen when mortals are allowed to do anything in the Church, no matter how much we want them to be infallible. More often than not, I think the real problem are inaccurate assumptions on our part about how God should do things or about what may or may not occur in a Church led by prophets and apostles of God. Such problems are often linked to inadequate information on our part, requiring a recognition of our incomplete knowledge and the patience and faith to wait for more.
We see through a glass darkly in this life. Faith and patience will always be required (Luke 22:19). There will always be doubts that can be stirred up, but if we have found the pearly of great price through faith, study, patient following of God’s counsel and the witness of the Holy Ghost, we should be prepared to deal with the inevitable onslaught of experts and other sources of doubt with a healthy dose of doubt itself, that is, to “doubt our doubts” — a phrase that to me means to have a healthy dose of skepticism about the attacks made by various experts, and to have an even healthier dose of faith and patience as we seek guidance and help to cope with those doubts. Reaching out to others who may have experience and knowledge with the issue can be helpful. Fasting and seeking inspiration from the Lord may be essential.
Jeff, thanks for this post. Outstanding observation.
I like the fact that you pointed out a possible medical error, but also showed understanding to the doctor, that what the patient's mom understood might not have been what was said. Sometimes miscommunications and misunderstandings happen, especially in times of stress, but fingerpointing and shaming are rarely helpful. Great way to tie in medical stress with spiritual stress.
Jeff, in your discussion of reasons people leave the church, you left out the most important one: people weigh the evidence honestly and sincerely and decide the church is not true. Happens all the time.
This was a good post until you started preaching.
— OK
And then there are people who are misdiagnosed but, because they believe in the people who misdiagnosed them, refuse to listen to the evidence presented by someone else.
Don't you think if there were any real validity to Mormonism it would have been appreciated and embraced by more than a couple percent of the world's population by now instead of approaching a state of regression? Especially in this era when media, the internet and tens of thousands of missionaries around the globe make it so easy for anyone to access information about the church? And yet, it's the very elect who were born into the covenant (many of whom were the missionaries) who are rejecting the false claims, ugly coverups and callous homophobia of the LDS.
Interesting point. In determining whether something has any validity or not, what is the required threshold for public acceptance of truths that people find uncomfortable or inconvenient? What percent of the world needs to be flossing daily, for example, for us to believe that flossing daily truly promotes dental health? Based on the lack of floss in many local stores here in China, I'm having doubts about what my US dentist has been telling me. The Great Firewall in China is not blocking facts about floss. So what gives?
Despite all the evidence against it, there are still 1 billion smokers worldwide – and the number continues to increase.
What gives? I s’pose anti-smoking ads are wrong afterall…
I wonder. Would a person who was prepared to "doubt their doubts" go out and get the crucial second opinion to find out they'd been misdiagnosed?
This is a very confusing metaphor you've proposed. It makes me wonder if a person weren't best served by getting all the information that was available before coming to a conclusion.
Not necessarily. In medicine, giving “all of the information that [is] available” would be impracticle and confusing to the population at large. Worse, the tendency of many patients to assume they are “zebras” would likely increase if doctors were required to tell every possible side effect of medication and treatments, leading patients to reject sound therapy under an erroneous interpretation of the – true – data they received.
For instance, in my practice many patients state they are ‘allergic” to statins when in reallity they arent. The problem is that an inocent provider shared with them that statin therapy – a proven medication to lower cholesterol in the blood – may in a small fraction of the population cause muscle damage. The true information has spread to the local community, so now most patients will report muscle aches after initiating therapy and state they are “allergic” to the drug, effectively tying up the hands of the physicians who have to use less effective medications to control their cholesterol levels.
All of the above came from sharing more of the knowledge that these patients could handle, to name is bluntly. It would’ve been better, for instance, to not share this possible (but unlikely) side effect and simply monitor the patient frequently for CK levels in the blood or overt signs of rhabdomyolysis. That way, more patients would benefit from the therapy and fewer would be “allergic” and reject the drug.
So, your recommendation, Oliver, is that someone should stick to the one person who tailors a message to them? And that's how you think someone would avoid being misdiagnosed? Or, having been misdiagnosed, avoid the consequences?
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