Wednesday, September 14, 2022

Too Much Info--But a Happy Ending


 

As a journalist, I am a big booster of free information. But….

 

Within hours of having a tumor removed from under my right ear in July, I was startled to see the lab results show up quickly on the patient portal. “Follicular lymphoma,” were the key words.

 

What the hell does that mean? I turned to my medical expert: Google. “A slow-growing cancer.” OMG. I’m a dead man!

 

I had an appointment days later with the ear, nose & throat surgeon, who did a great job but doesn’t deal much with cancer. “I just know it is the slowest growing kind,” he said.

 

A PET Scan was done at Duke University Cancer Center several weeks later to see if the cancer had spread further in my body.  Results came back online within minutes:  Most of the body was clear, but a lymph node in the intestines “may represent additional sites of lymphoma. Recommend comparison to prior PET/CT imaging,” the report said.

 

Oh, no! Better work on my obituary! Chemotherapy here I come!

 

A friend who is a doctor calmed me down. “They’ll probably just tell you to come back in a few months and see if it has gotten any worse,” she said.

 

Which is exactly what happened. The oncologist said my past medical records show that the lymphoma has probably been there for many years and hasn’t gotten any worse. Come back in four months to look under your ear and in another year for a full scan. Go home, don’t worry about it

.

I asked him why I got medical records before he ever saw them. A 2021 law makes health care providers give patients access to health information without delay, even if the doctor has not looked at it yet. It is not clear to me, though, if they have to post everything to everybody right away. There is an option to opt out of receiving health records, and you can choose not to look at them. But how can you not?

 

 Many doctors don’t like getting anxious calls from patients who have just seen their records.

 

“You should write about it,” my doctor said.

 

So I did.

 


 

 

 

 

 

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