CNN’s Empowered Patient, Elizabeth Cohen, provided more tips this week about what to do if you think you’ve been misdiagnosed.
My own misdiagnosis speaks to four of her five points – and if you have just a seed of a doubt about whether your doctor has diagnosed you correctly, please take Elizabeth’s advice. Here are her points and my experiences:
1. Ask for more tests. The CNN article tells the story of Nancy Keelan whose diagnosis was missed five times until she finally asked for a test her doctor had not ordered. It turns out that after three years of missing the diagnosis, Nancy had endometrial and ovarian cancer.
In my case, two labs had “confirmed” that I had lymphoma based on a biopsy of a lump removed from my torso. Ensuing CT scans and blood tests showed no sign of the lymphoma, yet my doctor insisted I needed chemo. Only by studying my own test results, which were all written in med- and lab-speak which I didn’t understand (meaning I had to look them up), did I realize that another test result was missing. I asked for that test. It turned out to be the pivotal one — the one that proved I had no cancer. If necessary, I also could have asked for a PET scan which would also have revealed I had no cancer.
I need to point out here, too, that I firmly believe that the reason the doctor didn’t look into more tests is because he wanted me to undergo chemo. He is an oncologist. Oncologists make their big money from putting people into treatment. Oncologists are the only medical doctors who profit directly from selling drugs themselves. Read more here.
2. Ask : what else might my illness be? If you have a list of symptoms and you begin reciting them to the doctor, then before you ever get anywhere near the end of the list, the doctor has already figured out what he thinks you have. Never mind that it might be wrong!
From there, he tries to fit what you have into his ideas, not fit his ideas to what you have. It’s backwards.
There is a process doctors use called differential diagnosis. Doctors consider a list of possible diagnoses, then hone in on the right one based on evidence from your symptoms to medical tests. What you want to know is what other possibilities are on that list.
In my case I was diagnosed with a disease called Subcutaneous Panniculitis-like T Cell Lymphoma. The other very obvious possibility was panniculitis — and it turns out that’s what it was. Benign. Goes away on its own. Certainly a better alternative than lymphoma.
But my oncologist was trying to start with the lymphoma and fit my symptoms to it. He asked whether I had hot flashes or night sweats — which I did — which he therefore insisted were signs I had cancer. But hey! I was 52 years old and I’m female. Hello? Geesh.
3. Don’t assume no news is good news. This is so true! Patients tell me frequently that they have been given a medical test, and since they didn’t hear back from the doctor, they assume that means there is no problem. Guess what? Results get lost all the time. The specimen or biopsy may never even make it to the lab for review to begin with. They might never be delivered back to the doctor’s office. They might get lost in the mail or emailed to a spam folder. They might fall to the floor or get filed in the circular file by accident. They might get left in the copy machine, ferheavensake.
Even if they do come back, if they seem unusual, there’s a chance they are wrong anyway! That happened to me.
And, my original biopsy results never came to me until two weeks after the biopsy. I did nag the doctors — but somehow the biopsy had gotten lost in the shuffle because it was the 4th of July holiday. (And don’t even get me started on medicine and the holidays!)
4. Assume your doctors don’t talk to one another. This is way too true. They don’t talk to each other. Period. They don’t WANT to talk to each other. Further, they avoid talking to each other – because — there is no way they can get paid for talking to each other. I do think that Elizabeth’s suggestion that you get them on the same conference call is unrealistic. First of all, most of us don’t have access to the technology. Secondly, because there is no reimbursement code for them to get paid for that kind of conversation, you need to set up a scenario so they WILL talk to each other.
Better to set up an appointments with both at the same time, then show up at one of the offices, and while you are in the doctor’s office with doctor #1, have him place the phone call to doctor #2. After the conversation, get over to doctor #2’s office so he can make a reimbursement claim for you, too. That way they might take the time to talk to each other because they can both get paid for it.
In my case, despite several requests, my oncologists never spoke to each other. Those were the days when I was innocently trying to find my way. Had I known then what I know now? I would have been far more insistent, and an even bigger thorn in the “bad guys” side than I was.
After all — it’s my body and my life, and I’ve simply hired them for their services. If they don’t do it right? Well then — I will do what it takes to make sure it’s right.
And THAT is what I call Patientude.
Thanks for the reminders, CNN.