Some diagnoses take months or even years. How can that be?
A patient comes to me with right shoulder pain. His pain is “out of proportion to the exam”. His shoulder exam does not fit with a rotator cuff tear, he has good range of motion, it is weird. I hospitalize him and ask orthopedics to see him.
The orthopedic surgeon agrees with me. It is not a musculoskeletal shoulder problem. We do xrays and labs. We do a chest xray as well as a shoulder xray because on the right side of the body, the recurrent laryngeal nerve goes down to the diaphragm and then returns to the shoulder and neck. So sometimes shoulder pain on the right is referred pain from a problem or tumor or pneumonia at the base of the lung.
His chest xray is normal.
We are having trouble controlling his pain even with morphine.
I call the general surgeon. My patient has some small lymph nodes in his supraclavicular spaces. We actually have lymph nodes all over, but many are hidden deep in muscles or under bone. We can feel them in the neck, the supraclavicular space, under each arm and in the groin.
The surgeon says there isn’t anything large enough to biopsy.
I call the oncologist in the next county. We are too small a rural hospital and do not have an oncologist at that time. I say, “I think he has cancer, but I can’t find it.” The oncologist listens to the story. He agrees. We do a chest and abdominal CT scan and some blood tests. The patient has had his colonoscopy. Nothing.
I send the patient to the oncologist’s bigger hospital. They can do some tests that I can’t. A bone scan and a PET scan.
The oncologist calls me. “I think you are right, but we can’t find it yet. Send him back when there is something to test.”
My patient goes home with pain medicine.
He then calls me every week or two. “It still hurts,” he says. “Please come in and let me do another exam,” I say. “No,” he says and hangs up. I am a Family Practice physician so his partner is also my patient. She comes in and rolls her eyes. “He complains, but he won’t come in!”
At last he shows up in the emergency room and now he has enlarged supraclavicular lymph nodes. The general surgeon biopsies them. It is an undifferentiated carcinoma. That means we don’t know where it is from. We don’t know the primary.
The oncologist says, “Send him down, so we can do the tests again.”
The patient is at home and refuses.
I call the oncologist back. “He’s refusing.”
“Oh.” says the oncologist. “Well, we can treat it with chemo blindly. We can try to figure out the primary and treat it more exactly. Or he can choose hospice.”
Ok, yes, three choices. I call and leave a message to go over the choices with him.
He comes up with a fourth choice: he refuses to talk to me at all.
I call his partner. “Yes,” she says, “He’s grumpy.”
“We are happy to help with whatever choice he makes.” I say.
“I’ll tell him.”
He continues to refuse to talk to me or the oncologist. Eventually he goes back to the emergency room and goes to hospice at the local nursing home.
I tell the oncologist. He comforts me. “Yes, sometimes we are pretty sure there is a cancer, but it has to get big enough to find.”
I am not comfortable with that but medicine is way more complex and messier than people realize. Sometimes it is really nice to have a patient with something where I know what it is AND it can be treated. Appendicitis. Gallstones. Strep throat.
But sometimes it is complicated and can take months or even years. Stay present and keep checking in.
The boat is returning to the water after work in our boatyard. Healed and seaworthy.
For the Ragtag Daily Prompt: quest.
I have known people like this, and their thinking is,’No one knows what’s wrong with me. They just want to 1) cover their ass or 2) make their money off me.’ It’s hard trying to convince them otherwise.
The other end of the spectrum is those who want to jump to the big tests instead of working their way up with appropriate tests. It has gotta be hard being a doctor. You almost can’t win for losing.
Well, I understood his frustration and I was frustrated too, but I was not the one sick.
A very interesting read.
I used to see farmers close to death from undiagnosed cancers. They often knew they were sick, were pretty sure it was cancer, but didn’t seek care until the pain was unbearable. Was it denial, fear of the healthcare system, or just deciding to die on their own terms? (I think the answer is “yes”.)
All of the above. Plus the lack of health insurance or inadequate insurance and wanting to leave the farm to the spouse or children.